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2011 Training Event Transcript
Susan Ellis Murphy: Hello. Good morning and welcome. Good morning. My name is Susan Ellis Murphy. Iím the regional coordinator of postpartum depression support services in South Jersey for the Southern New Jersey Perinatal Cooperative. We are confident that this day will provide you with a valuable learning experience and we appreciate that you took your time out of your hectic schedules to spend this day with us. The conference is funded by a grant from the New Jersey Department of Health and, as you may know, New Jersey was the first state in the nation to commit resources for women and families in New Jersey who are at risk for perinatal mood disorders.
To the state of New Jersey, we sincerely thank you for your support and your commitment with these endeavors. Thank you also to each of the maternal child health consortia involved in this program today. This is truly a collaborative effort. Representatives from each consortia are present today and I ask that these representatives stand as I introduce your consortium. Central New Jersey Maternal and Child Health Consortium. OK. Theyíre working, weíve got them working. Gateway Northwest Maternal and Child Health Network Ė Ruth and Naomi in the back there. Hudson Perinatal Consortium. Northern New Jersey Maternal and Child Network. Regional Perinatal Consortium of Monmouth and Ocean Counties Ė are they outside too? And the Southern New Jersey Perinatal Cooperative. Thank you to all.
Please note that the representatives from the consortia and others are wearing yellow ribbons on their nametags and we are available to assist you if you have any questions, weíd be happy to help you. Weíd also like to thank the staff at Winning Strategies. It has been a pleasure to work with all of you.
As a courtesy to our presenters, at this time, I ask you that you check that all cell phones and Blackberry electronic devices have been placed on vibrate or in the off position. Take a check because I will bet money that somebodyís gonna go off soon.
At this time, it is my pleasure to introduce the executice director of the Hudson Perinatal Consortium, Marianne Moore.
Marianne Moore: Good morning everybody. My job is to give you a statement from NJSNA that is required for the nursing credits so bear with me for a couple of minutes. Hudson Perinatal is an approved provider of continuing nursing education. Participants must complete the evaluation and attend all sessions to receive the full contact hours. Anyone leaving prior to completion will have the appropriate time deducted from their contact hours. Continuing education certificates will be handed out at the end of the program. Please retain them for your records. Replacement certificates can be obtained by contacting Hudson Perinatal, but there is a replacement fee for lost certificates of five dollars.
There is no commercial support for this continuing educational activity. The program does not endorse any organization or individual providing information or selling books outside the conference. The program and planners are not receiving any monies for products sold.
We wish to again thank the New Jersey Department of Health who provided unrestricted education grant to fund this program. The planners of the program have nothing to disclose.
Katherine Stone is the creator and editor of Postpartum Progress, a blog about postpartum depression and mental illness during childbirth. Dr. Diane Sanford is president of the Womenís Healthcare Partnership. Dr. Margaret Howard is the director of the Postpartum Day Hospital at Women & Infantsí Hospital of Rhode Island. Dr. Stephanie Zerwas is associate research director at the Eating Disorders Program at the Department of Psychiatry, University of North Carolina at Chapel Hill. Dr. Margaret Altemus is the director of the Payne Whitney Womenís Program at the Weill Cornell Medical Center and associate professor, Department of Psychiatry and Complementary and Alternative Medicine.
Now it is my pleasure to introduce Lisa Holland. Lisa is currently the director of chronic disease and control services for the Department of Health. She has served in this position since May of 2010. Lisa has over 20 years of hospital health plan management, quality and risk management compliance and research experience.
Lisa has her bachelorís of science in nursing from Vanderbilt University and an MBA from Rensselaer Polytechnic Institute. Please join me in welcoming Lisa Holland.
Lisa Holland: Good morning. Itís great to be here. Thank you Marianne Moore for that introduction. Itís my pleasure to have this opportunity to welcome you to todayís seminar. Iím filling in for Assistant Commission Gloria Rodriguez. Sheís recovering well from her recent surgery and sends her warm regards. Thank you to the Hudson Perinatal Consortium and the Southern New Jersey Perinatal Cooperative for all your work in collaboration with the Department of Health to make this seminar possible.
This training will provide tools and greater understanding of issues involving co-morbidity, management of perinatal mood disorders and recovery for thousands of women struggling with perinatal mood disorders or PMD. I especially want to thank Mary Jo Codey for her courage, commitment and convicton in speaking nationally about her personal experience with postpartum depression. Her advocacy has put a public face on the campaign to reduce the stigma associated with psotpartum deperession and other perinatal mood disorders. Postpartum depression, or PPD, is a perinatal mood disorder that affects between 11 and 16,000 women in this state every year. Between 10 and 20 percent of women develop a mood disorder during pregnancy or postpartum that requires professional help. New Jersey has been a national leader in raising awareness of postpartum depression since 2005. The Department of Health is committed to educating the public about the science of perinatal mood disorders and the treatment and support groups that are available to help women get well.
Through the ďSpeak Up When Youíre DownĒ campaign, Department of Health reaches mothers, their families and healthcare professionals throughout the state with information and resources. Through seminars such as this one, New Jersey networks with national organizations and renowned experts in the field of perinatal mood disorders to increase understanding and access to treatment.
As a result of legislation enacted in 2006, all hospitals in the state have policies and procedures for screening women for symptoms of PPD prior to discharge. New Jersey was the first, and currently the only, state to enact such a law. The Family Health Line has three staff dedicated to PPD callers to answer questions and offer information to women and family members about treatment resources nearest their homes. The staff receives between 300 and 400 calls per quarter. The Department of Healthí website, www.njspeakup.gov, includes a statewide directory of 44 support groups throughout the state. Nine of these groups are conducted in Spanish. Between 300 and 350 women attend these support groups each month. The website also provides consumer information on the signs, symptoms and risk factors of PMD and a series of video testimonials by survivors and family members called the Faces of PMD. Their encouraging stories provide help and encouragement to others.
New Jersey is encouraged by seeing signs of increasing involvement in this issue in other states and at the national level. Former First lady Mary Jo Codey has played a key role in generating this attention. She has spoken throughout the nation at conferences and in the media about postpartum depression.
It is my pleasure to introduce her as our first speaker. Mary Jo Codey has spoken eloquently of her experience with PPD for more than 20 years ago and of her determination to help women with PPD by assuring them that PPD is real and treatable, educating family members and the general public, and promoting professional medical education to increase physician awareness and ability to treat women with PPD.
In 2007, Mrs. Codey went to Washington, D.C., to testify before the House Health Subcommittee of the House Energy and Commerce Committee. She urged legislators to provide more research and funding nationally for postpartum depression and postpartum psychosis.
In May 2010, Mrs. Codey addressed the 58th annual meeting of the American College of Gynecology and Obstetrics in San Francisco which focused on the changing environment of womenís healthcare. She spoke about recognizing PPD and the ďSpeak Up When Youíre DownĒ campaign.
This past April, she traveled to Boston to speak to residents and faculty of Massachusetts General Hospital and Harvard medical students during grand rounds about postpartum depression and the importance of recognizing and treating PPD. Mrs. Codey will return to Boston in October to participate in a symposium on PPD held at the Vincent Club, which is an affiliate of Massachusetts General established to raise money for womenís health.
Please welcome Mary Jo Codey.
Mary Jo Codey: Thank you Lisa. Thank you for being part of the PMD/PPD Professional Training Seminar. I wanted to remind you that your knowledge of these illnesses and your kindness in choosing this field for your profession is a godsend for women who are suffering. Thank you.
I remember in 1984 when I was diagnosed with postpartum depression, I went home, we didnít Google then, and I went through every book I could find, anything that I could find on postpartum depression. And I finally did find something in the back of a book and I turned frantically to the page and it said, if your wife has postpartum depression, look out, she might accuse you of cheating and that was it, so you are so necessary, so needed and such a godsend to us.
When people as knowledgeable and as kind as you talk to people like me you bring us hope. When people like Sylvia share their stories on postpartum depression in books and childrenís books, we feel less alone. For women struggling with postpartum depression and other perinatal mood disorders, your help is essential for their recovery. Women know they are no longer alone and they may not be cheating on their husbands.
Todayís presenters are covering topics that will open the doors to recovery even wider. It is my pleasure to introduce our speaker today who would be our first. Katherine Stone is a nationally recognized advocate for women with perinatal mood disorders and anxiety disorders. She is a postpartum depression survivor. As a young mother who suffered with postpartum depression after the birth of her first child, she was inspired to reach out to other new mothers struggling to cope with postpartum depression and other mental illnesses related to pregnancy and childbirth. Katherine is the founder and editor of Postpartum Progress, an award-winning blog which features news and commentary, support group listings, links to treatment programs and stories from moms who can inform, reassure and encourage other women.
She also writes a weekly column on parenting for AOLís Parent Dish called ďIf Mama Ainít Happy.Ē She has served as a contributing blogger for PMS, this emotional life site, and is a guest editor on postpartum depression at Blogher, the worldís top community for guide to blogs for women.
Katherine founded Postpartum Progress Inc., a nonprofit focused on improving the health and well-being of women, children and families by improving services and support for women with perinatal mood disorders. This past Saturday she traveled to Washington, D.C., to receive the 2011 media award for Postpartum Progress from Mental Health America, formerly the National Mental Health Association. Her blog was recognized for outstanding coverage and portrayals of mental health issues during the previous year.
Katherine frequently appears in the media and speaks publicly about her experience with postpartum depression. She and her work have been featured in WebMD, the magazine, Scholastic Parent & Child, Newsweek, Sirius Doctor Radio and many other news and information outlets. She serves on the board of Postpartum Support International and the Perinatal Depression Information Network. Wow.
Katherine lives in Atlanta with her husband and two children. Katherine. Canít top that.
Katherine Stone: Good morning. She made me sound so good.
Mary Jo Codey: You are good!
Katherine Stone: Aww. Thank you so much Mary Jo. Good morning everybody! I hope, I heard there was some bad traffic so thank you for persevering and making your way here. Iím gonna talk to you today from a different perspective, which is that of a, of myself and all of the moms who go through these illnesses. I think, um, a lot of presentations are often medically oriented, which is of course extremely important, but Iím not sure you always get to get the perspective of whatís happening out there in the real world. Um, thereís a lot of, you know, policy conversations and discussion of how we should do things or we want to do things but I hear from the moms across the country every single day about whatís really happening and I want to share that with you today so youíll see that sprinkled throughout.
At first I want to just have a basic conversation about perinatal mood and anxiety disorders. I realize in many ways, and Iím grateful to you for this, that New Jerseyís probably one of the most educated states about these illnesses so please forgive me if you already know some of this. Itís an honor actually to be sitting in front of a group of people that cares that much about these illnesses and the women that go through them, including myself, and so Iím very grateful to all of you in New Jersey for being a leader, for Mary Jo taking a lead and speaking out the way she did, Susan, everybody here in New Jersey who does amazing things. So I just canít thank you enough so please forgive me if you already know some of these things. But itís always important to go back over it and share.
So initially I just want to talk about how many people really get these illnesses and I always like to sort of argue with the CDC if thatís OK. A lot of the numbers that are quoted, if you see in the media, are from the CDC. They did a study Ė PRAMS Ė and within that, they looked at several states and did some research on how many women get postpartum depression. But one of the things thatís interesting to me about that is it was based on self-reported cases. So if any of you know anything about postpartum depression you know that many of us feel shame. We donít like talking about it. We donít like raising our hand and saying that weíve been through this. So can you imagine, if the CDC says that between 12 and 20 percent of women get these illnesses every year depending upon the state and if their information is based on self-reported cases, then what is the real number? I think itís much higher personally.
The other thing thatís interesting about the CDCís data is that they donít include miscarriages, stillbirths and we know now, of course, that women who experience not just live births, but any outcome, can suffer from depression or anxiety after the birth of the baby. Plus, women who are pregnant can have antenatal depression, women who adopt can have post-adoption depression so thereís way more women experiencing these illnesses every single year. In fact, there are more of us experiencing these illnesses than people who sprain their ankles in a year.
There are more of us who experience perinatal mood and anxiety disorders than the combined number of men and women who have epilepsy and Parkinsonís disease and a bunch of other diseases that we all hear about all of the time because they have more funding combined together. So there are many, many, many women going through this every year and thatís why itís so crucial that you know all about it.
In the U.S., unfortunately, I think we like to think of ourselves as being advanced when it comes to perinatal mood and anxiety disorders, but really we donít have a lot of resources and we have to be honest about that. I talk to people who teach in medical schools who tell me that thereís very little time, if any, to go over these illnesses so theyíre briefly touched upon but they canít really get into it. In fact, thereís actually only one reproductive psychiatry fellowship in the entire United States, one. Just one, little, teeny, tiny one. When it comes to actual special treatment facilities, we essentially really have, you can count them on one hand. We have Women & Infants, which has its partial hospitalization program in Providence, Rhode Island, which I tell people about all the time. And then thereís the University of North Carolina, which, yay for us that both of those entities are represented today Ė UNCís hospital has an inpatient program. But as amazing as they are and as grateful as I am to them, why are there only two in our entire country?
Women really are rarely screened. I know thatís not the case, thank you, here in New Jersey. You guys have a plan in place and youíre really getting things done in that regard. But, outside of this state, itís just not happening in the same way. Itís not institutionalized and part of a routine of what people do. And then, thereís really, you know, I always like to tell people, nobody owns us, nobody owns us. And I love this quote from Dr. Wizner in Pittsbugh who said, this is a disease that lives between specialties Ė OB/GYN, psychiatry, pediatrics - patients are running around in circles.
And I can tell you, based on the work I do, where I talk to women around the country every single day, thatís the truth. Nobody owns us and so weíll get passed off and dropped and nobody and the other thing to remember is that, for so many of the women that go through these illnesses, they donít have any experience with mental health. They donít necessarily have a psychiatrist. They may have never been to a therapy session. Itís not like they already have somebody who takes care of their mental health. And theyíre not going to accidentally drop into a psychiatristís office after they have a baby. So they donít have any connection to the kind of help that they need and it makes it tough.
OK, one of the things to me thatís the most important to get across about these illnesses is the public health impact. And I think really a lot of people really are not aware of what can happen when a woman has a perinatal mood or anxiety disorder and is not treated, which, by the way, as it turns out, 85 percent of women who have them arenít treated. So thatís a huge majority of women in our country that have these illnesses that never receive professional treatment.
So, if theyíre not getting professional treatment, letís talk a little bit about what can happen. When it comes to depression during pregnancy, antenatal depression, we know that these women and this is all based on research so if you want to grab me after and ask the citation, where this came from, Iím happy to share it. We know that theyíre more likely to try to find some way to make themselves feel better. So they may return to or continue smoking, they may drink, they may take drugs. They feel terrible and theyíre not getting treated in the way we would like them to so they may self-medicate themselves. Theyíre less likely to do all the things that we would want them to do to follow prenatal care, go to appointments, those things. Their babies can be born, more, how do I want to say this? Ė are more likely to be premature than the average woman. They have low birth weights, low Apgar scores, so thereís just a lot of issues around having this baby inside you and suffering from antenatal depression and not being treated for it. And I think a lot of people make the mistake of thinking, oh my gosh, the treatment is worse than the disease and Iím not sure that thatís true so itís important to know that.
In terms of the risks of untreated postpartum depression on the mom, it would make sense of course that itís going to affect attachment and bonding. Itís going to reduce the odds of continuing with breastfeeding for those of you for whom breastfeeding is an important issue. One of the things that this slide says and I always like to mention it is itís an increased potential for child abuse and neglect which does not mean that women who have PPD abuse their children because most of us donít. But there is an increased risk.
And one of the things I like to point out about this is when I was sick, for instance, as an example, I used to drive through stop signs. I know what a stop sign is, itís this sort of red, is it hexagonal thing, and S-T-O-P, and youíre supposed to stop. I know what it is but for whatever reason and itís very hard to explain, however my brain was working, but I would just go right on through. And then about halfway into the intersection, I would think, wait a minute, I was supposed to stop. Thereís just something about having these illnesses that your brain doesnít think in the same way that it used to and so it makes sense to me that we are, we have a more difficult time sort of thinking quickly and following every safety regulation in terms of how you strap your baby into a carseat and making sure you put on the buckle in a high chair and things of that nature. So, again, I always want to make sure, itís not that weíre abusers, because we arenít, but they have found that we seem less likely to follow sort of safety guidelines that new mothers are given. And, of course, there is a potential for infanticide or suicide.
One of the things that I wanted to do today is really share words of real moms. So I went on my various social media sites and I asked them, I said, if you were up in front of this group of amazing people who are advocates, mental health advocates for maternal mental illness, what would you tell them? And they told me and asked me to tell you. So, throughout these slides, Iím gonna share with you what some of them said.
So hereís what one of the moms wanted you to know is that a depressed new mother can end up profoundly affecting all areas of babyís development. These women feel like they never knew that and they want you to know that and make sure that moms know this is not the kind of thing that you should just brush off and, if you have postpartum depression just hope it wears off eventually. Hving this and not getting treated can really affect your baby and women should know that.
So, letís talk about that. Again, when a mom is not treated for postpartum depression, her baby, there are attachment issues. They can be more likely to experience psychiatric illness themselves down the road. It affects behavior, cognitive abilities, all of these things. And this is very important. And I often like to say, for whatever reason it seems hard to get people to care about womenís health, I donít know why, but womenís health just doesnít get the kind of attention it deserves. But it seems really easy to rally people around childrenís health. Everybody is for children being healthy so I like to say, you know, this is not about just women, itís about women and children and their families and our children deserve healthy mothers. Taking care of womenís mental health is like the best buy one-get one free you ever get. OK? Because when you invest the time in the mom, youíre getting the kid too. Youíre helping them both and youíre setting them up for a stronger future. I just canít think of anything better so just remember that when youíre helping these moms youíre also affecting the future of that baby and thatís so important.
Another mom wanted you to know to please educate your patients and their families and destigmatize this disorder. So are we educating them? Not as much as you might think. I actually did, and it seems like this slide disappeared but Iíll tell you about it, a survey on my blog where I Ė and itís non-scientific Ė but I asked my readers to tell me how, whether they were educated about these illnesses in childbirth class, for those who attended. And the great majority said that they either received no information whatsoever or the information they received was so minute and glossed over in brief that when they became ill, it was completely useless. They still didnít recognize what was going on and they still didnít know where to turn to get help.
So thatís the data that I get every day from moms across the country. Iím not, these werenít necessarily New Jersey moms, but across the country this is what theyíre telling me. And data bears that out. There are various studies showing that the doctors who sort of make the assumption that I can identify this myself, I donít need a screening tool, I donít need to know that much, I can figure it out Ė half the time they miss the moms who are suffering, same with pediatricians. And a lot of studies of moms have shown that even they donít want to bring it up. So if theyíre not bringing it up and the doctor isnít asking the questions and is gonna miss people half the time, well then you have an issue identifying the women, obviously, who are suffering.
So what are perinatal mood and anxiety disorders? I like to talk of them as a spectrum of illnesses and I think itís important to distinguish between maybe whatís in the DSM, what, sort of how doctors sort of look at it and how women look at it. Women really wish there was a very bright line. We want clear black and white definitions of what weíre going through and we want a name. Iíve had people say to me, do you really, do women really need a diagnosis? Does it matter? Just call it major depression. Like why does it have to be postpartum depression? Why does it have to be postpartum OCD? Like what do you care? I wish I could accurately describe why we care but we do. We want to know. We want names for what weíre going through. We want to clearly understand what the symptoms are. We want words and very clearly defined information about these illnesses.
I realize that itís not as clearly defined as we would like it to be. And itís really sort of a spectrum. Itís not like you definitely have OCD, but you donít have depression. You definitely have this. Actually, I have a photo album on my website where women submit pictures of themselves with their children after theyíve survived because I really want to show the beautiful women all across our country and their families and show them all and their faces as an example of survivors to combat the bedraggled, murderous mothers that the media likes to portray. And one of the things that I ask them is what illness did you suffer? And itís interesting to me, theyíll send me an email back and say PPD/PPA/PPOCD/ Ö you know, so theyíre, you know, itís like we sort of have all this stuff and I donít know where the lines are. So please donít mistake me when I give you these examples here in a minute and talk about each. I donít think itís probably as concrete as Iím describing it but sort of thatís how the women like to look at it and so thatís how Iím gonna describe it to you.
I canít tell you how many women I hear this from. Another mom wants you to know that many women think itís not PPD since they are many months postpartum. So one of the important things to know is that you can get this any time in the first year, any of these illnesses, or during pregnancy. And I believe in the DSM right now it says in the first four weeks, which is just completely BS. And there Iíve said it and anybody who has a problem with that, they can just have the DSM call me, those people. Because itís just, you know, itís just not, itís ridiculous. Itís ridiculous.Hey ladies, if you didnít recognize that you were ill in the first four weeks, then too bad for you. And that is what is happening. Women tell me this all the time. I went to the doctor, I was six months postpartum and I realized that my life was falling apart. And they said, well you canít have PPD because itís not four weeks. So please know anytime in the first year or during pregnancy, you know. And it may not be that itís just starting up when theyíre eight months postpartum. Maybe it started awhile back but they just didnít recognize it. But, you know, please donít hold them to these arbitrary numbers.
Other moms have said, and this is really an important thing, I want them to know it doesnít always eman just crying or feeling sad. For instance, anger isnít discussed enough. Thereís such a wide variety of symptoms that women go through and in many ways they can sort of contrast each other and so I wanted you to see what many of them are. These are the things that women tell me. So, for instance, there are a lot of physical things that people describe. One said, I canít eat and I throw up everything. And another said, she has headaches, stomachaches, things of that nature. You have moms who say, I have no energy, I just, I canít do anything. And then you have moms who say, whew, the babyís asleep, Iím cleaning, Iím scrubbing bottles, Iím folding stuff, Iím doing laundry. You know, they canít stop or sit down or rest.
You have people who say, you know, Iím angry and full of rage. And then thereís another one who says, all I can do is cry. And then thereís another one who says, Iím just numb and disconnected. All I want to do is sleep or I canít sleep at all. I havenít showered or brushed my teeth in days, I look fabulous. All of these women have perinatal mood and anxiety disorders and I always like to show people. So Iím gonna do a little play, like a brief play for you. You ready?
OK, so womenís view of depression is a very Hollywoodized view. OK, so I want you to think of a commercial for any antidepressant. It doesnít matter, right? So this is what you see. Sheís wearing sweatpants, no makeup, sitting on the side of her bed and she looks like this.
That is what people think depression is. Thatís what they see so thatís what they think. So if thatís what you think it is but thatís not how you feel than you think, I must not have postpartum depression, Iím just crazy. Thatís what I thought. OK, so itís really important for women to know that you can have such a wide variety of symptoms and experiences and itís not one size fits all. It never is one size fits all. And women need to know that because itís such a horrible experience to have that Hollywood version in your mind and then start having symptoms that donít meet that Hollywood version and think literally that you are the most useless, worthless, horrible human being that ever walked the earth and you have no business being a mom. And thatís how I felt because I didnít know that what I was going through was an illness that is common and is fully treatable with professional help.
OK, so postpartum depression and Iíve sort of already made this point, but thereís such a wide variety of symptoms that women can experience and itís not all crying and sadness. Actually, itís interesting, I hear from so many women who are shocked about the anger and rage part. Theyíve never heard of that, never heard of that as a symptom of PPD. And they have no understanding or explanation for why it is that theyíre yelling at everyone, theyíre mad at their spouse or partner, theyíre mad at their other children. I have people tell me, I threw something through a wall the other day and Iíve never done that in my life. I have no idea whatís going on. So itís so important to know the variety of symptoms that women can have and, you know, I realize this is sort of a long list but these are all things I hear from women and what they go through.
There are so many different risk factors. There are so many different things that can bring a woman to experience these illnesses and Iím just gonna talk about sort of three buckets. The first is sort of your bodily functions and I have no business talking about this because I am not a doctor nor do I play one on TV. Like I donít know what a GABA receptor is, I have no, I canít, you know I get this research every day and I read it and I go great, because I donít know what that means. All I can tell you is that there are people doing lots of research with little mice trying to figure out whatís going on in our brains that is in some way related to whatís happening to us. And itís wonderful that all that research is happening but I canít say that from what I can tell any of it is Eureka! Found the exact cause! But certainly thereís something about our genes and something about how our brains are working that may be slightly different and more sensitive than other women.
There are also other things that are going on. Certainly women who have thyroiditis can have symptoms that mimic postpartum depression. Theyíve found that women with any type of diabetes, Type 1, 2 or gestational are at a higher risk. Certainly if you have a family history of depression or you, yourself, have had it. Although interesting enough to me, so many women in the postpartum period will get an illness, as I did, and realize now after the fact that they have had episodes of it their entire life or suffered from it in some way but never recognized it until now because itís so severe. So some people just donít know they have a history, right?
Thereís other things. Theyíre looking at peopleís vulnerabilty to hormonal fluctuations. Letís say if youíre already someone who has premenstrual dysphoric disorder, if you really are affected whenever your hormones change in your body, maybe thatís a sign. And then, another one thatís sort of interesting to me is this issue of sleep. And I havenít seen any definitive information but Iíve heard it discussed in various places. Sort of this idea of, think of Martha Stewart. Apparently she needs like two hours of sleep and she gets up and makes a turkey and builds a whole new garden and redecorates the powder room. Um, I need like minimum eight or you donít want to know me. And so, why is that? Are there some of us that have a set point for sleep thatís completely different from others and therefore, when we go through what everyone goes through with the sleep deprivation of having a new baby, is that affecting us more? I donít know. So thereís a lot of things, obviously, that are going on inside the body that, again, I canít explain or describe, but theyíre working on it.
But the moms told me to tell you they want you to know PPD is not merely a medical problem and this is interesting because thereís so much of a conversation about it being chemical. Itís a chemical issue, you know, itís a hormonal problem. We all sort of want to blame it on chemistry but the truth is there is a lot of other things going on in womenís lives that affect it as well. You canít really just say, I just had a chemical sensitivity. There can be more going on. These can include internal stresses, the pressure to be a supermom. People who are perfectionists and people who have, and this is sort of an inelegant way to say this, but I just call it mother issues. I know a lot of women whose mothers died when they were young who, you know, when they havea baby, that sort of pops out.
In my case, in a lot of womenís cases, I had a lot of trauma as a child. As it turns out, which I know now and my mom knows now, she had postpartum depression but she didnít know it. So she self-medicated with alcohol, became a very serious alcoholic and so, that was fun. And, you know, as I grew up I sort of thought, you know, Iím over it, Iím fine, I had that attitude Ė move on. Well, little did I know, that when I had a baby, unconsciously for me, whew, back out it came. And I didnít, now I can see that that was going on, but certainly when I was sick with postpartum OCD I didnít recognize that that was part of my issue is that I felt like, well my mom was a terrible mother, which, by the way, she wasnít. Sheís, you know, well now and I like her and sheís cool. Really. But I just, at the time I had this vision that if she couldnít do it, I couldnít do it either. And I didnít know that I, that that was happening in my mind but it was happening for sure.
And then certainly the third bucket is the issue of a lot of things that people already recognize: issues of not having social support, financial stress, marital stress, people whoíve had major events in the last year or so, a death of a loved one, a move, a job loss, single moms, teenage moms, moms who are in the military whose husbands are deployed, moms whose babies go to the NICU, women who have been on bedrest, women who have been through infertility, women whoíve had emergency C-sections, people who are immigrants. I mean, the list of things that can affect whether youíre at a higher risk just like could, you know, itís like Santaís list. It goes on and on and on. And I just think thatís really important to know.
In my dream world, which will come true some day, weíre gonna ask people what their risk factors are when theyíre pregnant and weíre gonna know that this set of women really is at a higher risk so letís focus on them and work with them and have a plan in place and hold their hand through this and watch out for them so that we can take care of them from the very start. Itís gonna happen.
OK, postpartum anxiety, OCD, panic disorder. These are near and dear to my heart because Iíve been through them myself. in terms of postpartum anxiety, these moms will tell me anyway, instead of sort of feeling crying and depressed and sad, theyíre continually worried. They canít relax, they canít sit still, their thoughts are racing, they canít eat, they canít sleep, things of that nature which I imagine would mirror regular, what is it? GAD, general anxiety disorder, except a lot of the worries and things are around being a mom.
And then you have OCD. When I was pregnant Ö first of all, my husband and I were married eight years, doing great, made a conscious decision to have a baby, got pregnant, whew, which my husband was really disappointed about because he wanted to practice more. Everything was great, healthy pregnancy, not an issue. Now I can look back and see that I was very anxious when I was pregnant but I just thought, you know, it was normal to, for instance, when I pumped my gas I walked 20 feet away from the gas pumps so I wouldnít breathe in any fumes. Anybody else ever do that? Thatís very comforting to know Iím the only one. Yeah, that tells you right there. That should have been a sign but it wasnít. I just thought those kind of concerns were normal.
I had my son, it was a difficult delivery. He had jaundice. They told me that jaundice happens all the time. All my friends said, jaundice happens all the time, they put Ďem under the lights, give Ďem the little sunglasses, heís OK. Mm-mm, I thought he was gonna die and no one could convince me otherwise. In fact, they discharged me from the hospital and I refused to leave. And I always say, when Iím presenting to nurses from hospitals, I was one of those patients. And they all go, yeah.
And then, about seven weeks after my son was born, one night I was putting him to bed, burping him with the burp cloth and the thought came into my head, what if I smothered him with a burp cloth? Period of silence? It was horrifying. Thereís no words to describe having a thought like that. I always tell people, Iím the kind of person I drive around the dead squirrel on the road because I donít want to offend their soul. Like the idea of thinking of smothering my own son is ridiculous. So I tried to just, pshaw, what was that? Except then it was, what if I drown him in the bathtub? What if I drop him down the stairs? I came to believe that I didnít, obviously I didnít know the person I had been the 32 years prior so I was clearly a horrible monster and the real me had finally shown up. Why I didnít believe the first 32 years was the real me and this wasnít, I donít know. But I was convinced I was a horrible human being. No one had ever, in my entire life, mentioned intrusive thoughts. I didnít even know you could have intrusive thoughts. And I didnít know that when you have postpartum OCD, youíre not going to harm your child. These are your fears and youíre worried about them and, actually, as is in my case, I did everything I could to avoid being alone with my child. I made a plan that if I tried or thought about actually moving forward to harm a hair on his head, I was going to go into the guest bedroom and shoot myself with my husbandís gun. Why the guest bedroom, I donít know, but thatís what I was gonna do.
So I canít tell you how many women I talk to who have these thoughts and are so relieved to hear that they arenít monsters and that this is an illness. When I actually finally reached out for help, and by the way, I only did it because I thought the gig was up anyway and my life was over so I might as well tell somebody, and I thought when I first met the woman that I met in therapy that she would call the police when I told her. I was fully prepared to go to jail. And she said, oh, well those are called intrusive thoughts. I have a lot of patients that have that. Would you like to hear? She saved my life in that one moment, saved my life. I owe my life to her for being that calm and wonderful and knowing what she knew and telling me that I was not a horrible human being. So, man you are doing a great service to the women of this world right now by knowing about postpartum OCD.
Panic disorder, Iíve actually been writing, doing a series about that on my blog this week because I realize I havenít really written enough about panic attacks so I said something about and whew, like the blowback, out of the woods. Everybody came on the Facebook page saying, well I had them and I had Ďem and I had Ďem and I thought, wow, I didnít know this many women were having panic attacks, which, of course, is shortness of breath, chest pains, numbness, tingling , muscle cramps, heart palpitations, terrible, terrible. So there are a lot of women going through that.
Thereís postpartum PTSD, which it seems like has a lot to do with either a traumatic childbirth or a perceived traumatic childbirth. Iíll give you two examples. One woman was in her hospital room after she had her baby. Her husband and the baby were in there with her and there was a tornado warning. There was definitely a tornado in the area. Well they took the husband and the baby out and then they forgot about her. So they left her there by herself. She ended up having postpartum PTSD. Another woman that I know had to have an emergency C-section. Sheís laying on the table and they put a mask over her and whatever, I donít know whatever it was in her harm or whatever they gave her, she had a reaction to and she stopped breathing. So sheís laying on the table, she knows sheís stopped breathing but no one else knows sheís stopped breathing. So she recounts what itís like to lay there and think youíre gonna die. So sheís literally thinking, howís my husband gonna deal with a baby? And I canít believe this is happening right now and Iím gonna leave them. Well, I guess an alarm went off or something and they realized it and they took care of her and she was fine but she had a terrible experience with postpartum PTSD. And these women have flashbacks, nightmares, they will not, theyíll fire the doctor, fire the hospital, never go back, want nothing to do with any of it. So that can be a very, you know, powerful experience, very tough. Also, women who go through rape apparently can be more likely to have postpartum PTSD.
And then finally in the spectrum is postpartum psychosis. Thankfully this is pretty rare and usually happens sort of earlier rather than later in the postpartum period. And the symptoms are delusions, hallucinations ... itís fascinating, I actually worked with a group of women, all of whom are survivors of postpartum psychosis. And I put together something called ďThe Symptoms of Postpartum Psychosis in Plain Mama English.ď And I asked them to describe to me and we came up with a list, from their point of view, of what itís like and itís amazing to hear them talk about what itís like in the midst of postpartum psychosis. One of the things that really fascinates me is that so many of them said, they felt like they now understood more about the world than anyone else and that, all of a sudden, everything became clear and everything was connected in some way and they could see connections that no one else could see. I mean, itís amazing to hear them talk about it. And so we put that list together from their point of view on what itís like to go through that illness.
And whatís important, I think to me, is that they describe feeling compelled to do something even if you know itís wrong. Itís not that they donít, some of them donít know if somethingís right or wrong or that they donít feel a little bit even uncomfortable by it Ė some of them have told me Ė some donít, but others have said, I sort of know, I sort of didnít feel comfortable but I felt like if I was told that I had to save the baby or I had to do this or I had to do that, that there was Ö one, itís kind of a crude way of saying it, but one lady described it as just as normal as having to go to the bathroom. Your body tells you you have to go to the bathroom and you go, like itís, you canít, you donít get to question it. Itís something you have to do. And thatís sort of how they describe some of the, I guess, what do they call them? Delusions, command delusions, things that you have to do.
Anyway, itís a terrible illness and my understanding of it, itís always considered an emergency, a psychiatric emergency because 10 percent of the women, thereís a higher risk of committing infanticide or suicide and so any woman that has these symptoms needs to be hospitalized until sheís stable. And thatís for her benefit. Itís not because sheís, and I tell women all, you know, theyíll, Iíll have people email me and say, Iím having strange thoughts and do I go to the hospital? Iíve been hospitalized and Iím kind of glad Iíve been hospitalized because I can talk to them about it and say, itís not gonna kill you and this is where you need to be and itís OK, because thereís a lot of fear.
Antenatal depression is just as common as postpartum except itís talked about even less. And interestingly enough in the last few weeks, lots and lots of women are coming out and writing their stories about it. Itís really tough for them because if you think itís hard to decide about your treatment plan when youíre having postpartum depression, try being pregnant and making the same kinds of decisions and thereís complete disagreement, thereís no consensus whatsoever it seems like, what these women tell me from the various doctors they talk to. One woman told me the other day that in her OB practice, one person said and prescribed her a drug and said you need to take this and another person in the same practice told her that she was harming her baby by taking it. In the same practice! So itís very difficult for women going through antenatal depression to make these decisions.
OK, so I wanted to give you some more words from women about whatís really happening in the real world and so Iím gonna share with you a few little stories and I hope these are beneficial in some way. So the first thing I want to talk about is asking for help and what is happening to women when they ask. So hereís one mom who says, the OB nurse called back to say that after three months postpartum, they donít consider it PPD anymore and I should just call my primary doctor. Now Iím confused and I donít know whatís wrong with me. Every day this happens, every day women are told, you canít even have that. Another: I asked my OB for help twice. Each time I was told I may be experiencing only baby blues, itís normal. I should give it a little more time to let my hormone levels go back to normal and then if I donít feel right, we can talk about it again. I mean, hereís someone who has realized she is suffering, gotten the courage to ask for help and sheís told, oh honey, honey, go take a hot bath. Iíve had people told that, go take a hot bath. This one says I went through postpartum anxiety. It went untreated for a long time, not because I didnít try to get help thought, but because my doctorís checklist is all about PPD and didnít address anything I was going through.
This happens a lot. A lot of the information that is out there again is about depression and so Iíve had women say to me, my doctor said theyíve never heard of postpartum OCD. The OB has no idea what intrusive thoughts are. So when they go in and those are their symptoms, theyíre looked at like, I donít know how to help you. I donít even know whatís going on. This one says, I wish that just one of my healthcare providers had heard of intrusive thoughts, here we go, and PPD OCD. I had a textbook case. No one knew what was going on. Instead I was immediately seen as a threat to my child. I was separated from her for a month in a psych hospital. It took my husbandís research and getting in touch with PSI and then our state coalition to finally hear about postpartum OCD. Happens all the time.
They told me antenatal depression didnít exist. Happens all the time.
I love this one. I wish there was someone we could sue for lost time and sanity, some sort of class-action suit against humanity or the healthcare system for marginalizing us, for sending me to a psychologist who knew, a psychologist, a psychologist, who knew nothing about PPD and to whom I had to write out a list of books on the topic. Happens all the time.
Iím telling you women are shocked to find out they have to educate their own doctors. Theyíll go to my site, to PSI, to these various places and get the information and print it out and go, See, I told you.
My former psychiatrist told me that if I kept talking like this, maybe somebody would take my baby away. I was speechless and just sobbed uncontrollably for the remainder of the 10-minute appointment. He said that I was to blame and that maybe I needed a 12-step program and to make a gratitude list. And I wish, I just wish I could tell you this is like the rare exception. I hear this stuff every day.
Hereís another one. The system, oh and this is, another mom wanted you to know that the system for getting to an actual doctor is way too hard to navigate. We canít get help fast enough. So here are some examples of that. This one said, it shocked me that no one was willing to help. This is a mom by the way, a grandma, sheís trying to help her daughter. I had to beg and plead with my daughterís doctorís office to see her. They referred me several times to the psychiatric wing of the hospital and that agency told me that they could see her in three months.
And a lot of people, when I say things like this, will say, well, sheís probably out in the middle of nowhere, no, you know, not in a city. But then I hear from women who are in huge cities all the time. I live in a progressive urban environment with access to some of the best hospitals in the nation. My OB wouldnít prescribe me anything and there was a six-month-long wait list to see a psychiatrist and even longer to see a therapist. All the time. I mean, again, when you finally decide to ask for help for these illnesses, when you finally decide, you want it today, yesterday. And when youíre told, sorry, we canít see you for six months, you might as well say, just go kill yourself. I mean, Iím not kidding. Itís just like saying, nobody cares. Itís shocking to have somebody say that to you. And Iím not saying that I donít understand the system. Itís not your fault. I realize thereís a shortage, I realize you guys are seeing like gobs of people all the time. Itís not that, itís just a horrible situation for everyone.
And itís not just the access to physicians, therapists, itís also the issue of even support groups, phone lines, those sort of things. Hereís an example of that. It took a huge amount of effort for me to get to this PPD support group and no one was here. I wish I was surprised. Another one: I tried to reach out to PPD support organizations but they have voicemail machines instead of people but I never end up leaving a message. Because theyíre too uncomfortable, theyíre too scared. Some even say, Iím not asking for help anyway because of insurance reasons. I will tell you, try to get life insurance after youíve had postpartum depression. Good luck with that.
And then others are afraid that their babies are going to be taken away. I mean, thereís so many barriers, thereís so many reasons why we donít even ask for help in the first place. Then, when you do ask for help, everybody has something to say about what kind of help it is, especially medication. Only the most severe, and these are real comments on my blog, people have commented. Only the most severe cases of depression have been helped by SSRIs. These drugs are oversubscribed and do not work for the vast majority of people. OK, thank you. When we hear about depression, we associate, and these are people who have no medical training, by the way. When we hear about depression, we associate this word with mental illness. However, contrary to what the drug-peddling psychiatrists say about it, depression is not an illness.
One thing I did not do was take any medications as they wreak havoc on your system. Itís always, always better to tackle this problem from within than be left without. So, it may be strange. I realize you probably donít see presentations like this where people are quoting women, but I want you to see whatís in their minds when they finally get to you. The variety of all the things that have come into their brain when they finally come to you, because itís important to know whatís in there and what theyíve been told because you have to deal with it.
Everybody has a recommended form of alternative treatment. I highly recommend looking into Ė I donít even know what constitutional homeopathy is, but somebody highly recommends it. The coconut diet and Iím not making that up, thatís a real comment. I donít know what the coconut diet is. Or people who say, I used progesterone cream. You have to use this, you have to use that, you have to take this, you have to take that, which, of course, none of that is right. And hereís the big one yíall. Get ready to fry up that placenta. Iím not kidding. While ingesting oneís placenta is largely out of vogue these days Ė actually itís kind of in vogue Ė and there are some potential toxicity issues, if we look at this practice from a nutritional point of view, it kind of makes sense. No wonder our canine and feline friends, like what that has to do with, I donít know but Iím not kidding, instinctively eat their placentas immediately postpartum.
And Iím telling you right now I have people emailing me constantly Ė whatís the data on this? They have people saying, Iíll encapsulate your placenta for you. I mean, itís being pushed, big. Get ready, yíall. Get ready. You know, everybody feels uncomfortable with big, bad psychiatric treatment even though itís fine. I know you donít bite, itís great. Iíve been through it, Iím better. But because of the fear, you know, people will sort of naturally gravitate to, is there anything else I can do? And so these are the things that you guys are gonna have to deal with.
And thereís certainly a lot of friends and family who are uneducated and not saying the right things. This one says, I get a particular chill remembering a pediatrician friend who advised me Ė a pediatrician Ė who advised me not to tell anyone which made me feel incredibly ashamed. It really sucks when youíve been through PPD and people say uber-sensitive things like, take your medicine or go check yourself in somewhere.
And now, and I realize these are crude, but a lot of people donít realize how many people are on social media. Itís the majority of adults. OK, the majority on various sites using social media. And because women are on these sites every day, they are seeing what people say about postpartum depression. And Iím telling you right now the stuff that Iím about to show you is on there every single day. I delete it off, every day.
I took a huge --- today that I took, it was so huge that I suffered from postpartum depression for about 17 minutes. That is so old. I have heard that about 400,000 times. And then this next one is very popular. It was said by a comedian Tosh.0 who has his own television show on the Comedy Central channel and it is repeated hundreds of times a day: postpartum depression, just bitches being bitches.
I mean thatís what weíre seeing when weíre going through it and deciding whether we should tell anyone or not.
Hereís another one Ė postpartum depression, all these monsters getting away with the killing of their babies. Because, yeah, you know, weíre all going around killing our babies. This one Ė Report: Mom says she killed boy found in Maine. So sad, women need to talk more about postpartum issues. This boy was 6 years old. Anytime, any mother ever harms her child in any way, the first thing anyone says is postpartum depression.
I imagine postpartum depression is higher in women who overeat during their pregnancy because now theyíre just fat.
So, you know, I realize this seems sort of insensitive and ridiculous but I really wanted you to know the kind of stuff thatís said every day about PPD because really this is what women are seeing. So we really havenít changed the stigma at all. Itís very tough. It makes us, as she says, feel shameful. Itís a silent epidemic, leaving mothers feeling shameful and thatís the truth. And so, any little thing that you can do with your words, as Mary Jo Codey said, with your kindness, makes an enormous difference in someoneís life like you have no idea. And peer advocacy, which is what I do, is important too. I wanted to share with you a couple of comments because I think people donít really understand how much just having one other woman whoís been through it say, Iíve been here and youíre OK. It makes a huge difference.
It feels lame to be shouting, see, Iím not alone, Iím not out of my mind. But itís really all we have, right? I canít tell you how reassuring it is to read your words and those of the other women who contribute to your blog and recognize myself. Iíve been going back and forth for years trying to decide if I was really going crazy. Reading your story finally turned on the lightbulb for me. I canít possibly thank you enough for sharing your story and helping me finally find an answer.
Iím glad Iím not alone and there are other women whoíve survived this and gone on to love their babies. Thank you for being part of the light at the end of the tunnel. You have given me hope.
I wanted to share these with you because I just spent the last ten minutes sharing really nasty, awful stuff but all of that gets combatted when one person looks them in the eye and says, I understand what youíre going through. Forget all those jerks, those trolls, forget Ďem because we get it. We know youíre not to blame. We know youíre not defective. We know youíre not a horrible human being. Youíre gonna be a rockiní mom and you just need help to get through this and youíre gonna be just fine. I am a rockiní mom and I know it even though I went through postpartum OCD. My son is nine now and he kicks ass. And, by the way, I had another child, sheís five. I chose to remain on my medication during pregnancy and I was fine. I had a great time. So I wanted to share with you just finally at the very end the fact, and this is something that I think really people are not, do not recognize how many resources are out there and available. And this is what I love about technology because so much of it is free. You know, all you need is a computer and you can hop online or hop on your phone and you can access things that are being created for women. So they donít always have to rely 100 percent on you. There are other things available Ė blogs are one, and there are some people really doing some great work and work thatís, I mean, these are women whoíve gone to PSI meetings. I mean, theyíve been trained enough that that there not, you can feel OK that theyíre not saying anything like way out of the reservation. Thereís, for instance, something called PPD Chat, which is on Twitter. It happens every Monday at one oíclock and 8:30 and anybody can join in that. So you can always grab me later and Iíll tell you how to do it. Thereís vibrant community of women now Ė Diane knows, sheís participated Ė that are involved in that, free.
I have something now called Daily Hope, which has 600 or 700 people involved in it now. I write a message every single day about some aspect of going through these illnesses and anyone who opts in gets it in their email box. And I get emails from women saying they cling to it. They print them out and tape them up and itís just a way to share the voice of people whoíve been there to support them. PSI has something called Chat with the Experts that you can participate in. Itís every week, right? I think itís every week and you can call in and chat with some of the experts from PSI. Itís an 800 number, toll-free, you can remain anonymous. They actually have a chat with the experts that are just for husbands, men, partners who want to call in and ask questions. Thereís an online PPD support group.
So thereís lots and lots of things where when theyíre not with you, if theyíre not with a therapist or not with a psychiatrist, there are lots of people now, sort of all banding together through social media, to offer them moral support. And I hope that youíll learn about these things and get access to them because theyíre really great.
Thank you. And come grab me later if you want to know about them. Oh questions, yay, Somebody ask me one so I donít feel like nobody has anything interesting to say about what I just said. Yay. Hi.
Audience member: You said that the doctor saved your life Ö
Katherine Stone: Therapist, she was a therapist.
Audience member: Ö therapist saved your life. Did you speak to your husband before you saw the therapist and what was his reaction?
Katherine Stone: Great question. I did not speak about my intrusive thoughts, no. I was not telling him that. I kept, what I told my husband was, thereís something wrong. Thatís what I said. I said, somethingís not right. And I would beg him to come home at lunch. I would call him at 4:58 every day to say get your butt home from work. So he knew that I was very clingy. He knew that I was acting extremely anxious but he had no idea why. I think his attitude was like, who came and stole my wife and replaced her with this human being thatís like nothing like I would have expected. So no, I really didnít. I basically just said somethingís wrong and eventually he said to me, I canít really help you, like I donít know whatís going on, I canít help you. Call the doctor. Does that answer your question?
Audience member: Yes.
Katherine Stone: OK.
Audience member: Hi.
Katherine Stone: Hi.
Audience member: Do you ever have speaking engagements for moms who come and hear that youíve made it through?
Katherine Stone: You know, I do a lot of speaking at blogging events, oddly enough. But no, I would love to do that. Oh, call me. Call me. I would love to do that. Usually, and I donít know why this is, but usually Iím talking to social workers, therapists, medical school students, things like that.
Audience member: Hi.
Katherine Stone: Hi.
Audience member: Thank you for your talk.
Katherine Stone: Thank you.
Audience member: How, you mentioned that your mother suffered from postpartum depression, you suffered from postpartum OCD, how are you preparing your daughter for when itís her time?
Katherine Stone: Thatís a great question. Itís very important to me, obviously, because I sort of have Ė I realize I shouldnít because I realize I shouldnít turn it into a self-fulfilling prophecy but in my mind I just have this vision that, you know, somethingís probably gonna happen. So, thankfully my children know what I do. Madden, who is 5, doesnít really understand it. As a matter of fact, she just said the other day, daddy works and you donít, because he goes to an office and Iím at home on my computer. I was like, thatís nice. So she doesnít quite get it. My son is very clear because Iíve had to have the conversation with him. Heís like, Mom , whatís you know? So Iíve talked to him about what he and I went through together.
In terms of how Iím gonna prepare her, I think because I spend every day doing this itís going to be really obvious to her at some point when she can understand what I do. So sheíll know and Iím gonna be watching her like a hawk, to be honest with you. Iím gonna be with her every step of the way. Iím gonna talk to her about what she needs to watch out for. Iím gonna make sure that she has a team of people that are available to her. I think education Ė Iíll give you an example. Thereís a whole sort of host of women that I know who are survivors. OK, and theyíve all recently just had babies. And Iím getting emailed like crazy because theyíve all so nervous and scared. One mom emailed me saying, itís coming back, itís coming back. Sheís having a panic over it. Itís coming back, I know itís coming back. And actually, all it was, she was just dealing with the fact that now she has two kids. And her son, her older son was sort of like having a hard time with mommy and pushing mommy away and going to daddy. And I was like, Emily, youíre fine, youíre fine. You sound fine to me. She was fine. I was like, give yourself a day. I think youíre just , like this is, youíre just so shocked at how your son is reacting to you. Sure enough, she was OK. Another mom was like, I feel like Iím going down a hole. Iím going down a hole. I was like, why. So she started talking about it and I was like, have you called Dr. Newport? You know, because we have the same psychiatrist. And I was like, tell him to call you back right now. Itís just interesting to me that we all, those of us who know we have the potential to go through it, some actually do again, but even then I will tell you that they already know whatís going on, they know who to call, they know theyíve gotten through it once. So even the people I know for which itís happened again, it seems to me, and this is only anecdotal, that it hasnít been as bad because they really got ramped up real quick with whatever the treatment was.
So I sort of look, like with my daughter, sheís going to just have so many people around her who understand and you better believe, Iím gonna be like, what did the OB tell you? Because if they didnít say anything, Iím gonna march my ass right in there and say, look mister, I write Postpartum Progress. You know, so I really, I really think with our daughters itís just a matter of education and saying, there is no possibility of having perfection when you havea baby so letís start from that and move forward. And Iím gonna be with you every step of the way.
Katherine Stone: All right. Thanks ladies. Oh, and really quickly, in the center, those are my babies who I do this for every day. And then some of these pictures are just some of the women who are on the photo album so all of these people are survivors of PPD, PPA, PPOCD, PPPTSD and they all want you to know how important you are to their health and recovery. So thatís it.
Audience member: Actually, Katherine, we just have one more question on this side of the room, on your left.
Katherine Stone: Oh.
Audience member: Hi.
Katherine Stone: Hi.
Audience member: I know you talked about the therapeutic process and that, what was helpful. As a therapist, Iíd just like to know, personally for you, what was helpful and what wasnít helpful. What do you think we can do?
Katherine Stone: In therapy, you mean?
Audience member: Yeah.
Katherine Stone: I think so much of it has to do with the therapist. One time, and this wasnít with PPD, I ended up having a spinal injury that caused severe nerve damage so much that I was in pain 24 hours a day, had to have a nurse take care of me because I couldnít walk anymore. So I got kind of depressed about it. So I went to see a therapist and I was sobbing and the whole time he kept laughing. It was just a tic of his, he just was one of these people that kind of has a nervous laugh and so Iíd say something and heíd be like, heh, heh. And I just thought, what the hell? So to me, honestly, so much of it just has to do with demeanor. Like, having the knowledge and then the demeanor, your calmness, thatís the one thing about that therapist that I met with that Iíll never forget is just how she was so, hmm, well, this happens all the time so letís talk about that. Itís gonna be OK. And I was disarmed immediately. To me, thatís the thing that helps. And the thing that doesnít help is just, you know, the people who are uneducated, the therapists who donít know anything about it and who say the wrong things. But youíre not gonna be one of them so donít worry.
Susan Ellis Murphy: Iíd like to introduce our next speaker. Diane G. Sanford is a licensed psychologist and is president of the Womenís Healthcare Partnership in St. Louis, Missouri. Dr. Sanford holds a bachelorís degree in psychology from the University of Michigan, a masterís degree in science and a Ph.D. in clinical psychology from Syracuse University. She provides individual, group, couples and family therapy and specializes in womenís reproductive health, including pregnancy and the postpartum period. Dr. Sanford is the clinical advisor to Mother to Mother, a grassroots, telephone, peer-support service in St. Louis, Missouri. She is an adjunct associate professor in the Department of Community Relations, School of Public Health at St. Louis University.
As an internationally recognized expert in the field of womenís reproductive emotional health, Dr. Sanford is a published author and lecturer on the topic. Please join me in welcoming Dr. Diane G. Sanford.
Diane Sanford: Iím getting my technology instructions so hopefully Iíll get it right.
Good morning, I wanted to start by telling you all a little bit about my story which is different than Katherineís and everyone elseís because each of us is unique. I had my first baby when I was 31 years old and I had already been counseling postpartum women for a couple years then. My OB told me it was the hardest thing I would ever do, harder than getting my Ph.D., harder than getting licensed and I kind of laughed at him thinking, what can a man possibly know about becoming a mom? But he was right.
And what happened with me is that after my daughter was born, I had some problems with breastfeeding and she started losing weight. So about three or four weeks into it, when she was sleeping through the night and I thought that was great, we discovered that she needed to be breastfed more often. So I had to start waking her up every two or three hours to nurse and that was part of, I think, what led to my becoming so exhausted, depleted and then, you know, I still believed in supermom back then so we would have people over and I would make meals for them, entertain them. My mother came every day to help me and would tell me to go lie down and take a nap and I would not do it because I felt like I was the mom and this was my baby and I needed to be responsible for everything going on.
So, long story short, I ended up with mild depression. I was fortunate. At about three months, I went back to work and so many aspects of my life changed and that kind of helped me restabilize. But in the meantime, I had withdrawn from my friends. I just wasnít myself. I was really out of sorts. And, of course, I didnít take my own advice, which I had been telling other women to do for two or three years then, which was how to take good care of themselves and how to balance their needs with those of their family. And thatís really my platform. My platform is all about self-care, self-management and finding balance.
So I had my second daughter about four years after that and guess what? I was old enough and wise enough to walk the walk instead of just talking about self-care and not doing it myself. I had no problems. I had a great experience. It was such a wonderful opportunity to really enjoy motherhood the way Iíd imagined I would the first time. And from that I learned, through the lived experience, like Katherine has talked about and many other women who go through this, through the lived experience I learned that self-care is key and that if you do certain things, and again, in my case, I didnít have certain vulnerabilities that made me have a severe episode, that if you take certain action yourself, in collaboration or not with health providers, you can produce quite a different outcome.
So, today Iím gonna talk about self-management. Iím gonna talk about some of the self-care strategies that I recommend and practice. Iím gonna talk about self-assessment, risk identification, symptom identification early because weíre gonna start with pregnancy because I have the same dream that Katherine does, that we are going to start educating and assessing women during pregnancy so they can hopefully have good outcomes and certainly diminish the probability of poor ones and so that if something starts to happen to them, they know what is happening and they can take steps to do something about it, again, in collaboration or not with their health providers.
OK. So what is self-management? And before I get into this, how many of you are nursing or non-behavioral health providers? OK, a fair amount. And how many of you are behavioral health providers? OK. So as I go through this, Iím gonna break it down and make it what I hope is faily simply that whoeverís providing the care can follow it.
How many of you provide care to pregnant women? Oh, great. OK. And how many of you only see women post-birth? Great, OK.
So, self-management is client- or patient-directed efforts to monitor or evaluate personal health status and execute what Iím gonna call health-enhancing strategies and behaviors. And why is this important? Well, itís important because, first off, it increases the personís responsibility for herself. When a lot of people come to see me, the first thing they want me to do is fix them. And I explain to them, Iím a really good therapist but I canít fix you. I can partner with you in helping yourself get better, but I canít fix you. And even if you take medication and I totally believe in medication, you still have to work with it to get better.
Self-management helps because it improves skills acquisition through direct learning. There is no experience like the lived experience of something. We understand it differently. Weíre able to execute it differently. It may be sufficient to produce improvements in health status and healthy habits and I work with women across the spectrum so Iím seeing moms who may be experiencing adjustment difficulties and they can get better with a little help from me and a lot of help from themselves. And it may also be used as an adjunct with other treatments or interventions. So if you have a woman on the spectrum whoís got moderate to severe anxiety or depression, whatever it is, sheís gonna need more help.
But she can still learn these basic skills. And what I would argue is that all moms can benefit from self-care skills and the kinds of things that Iím gonna talk about.
OK, itís also empowering when a mom isnít able to manage her stress and she learns to do what she can, itís very empowering to her and it helps build self-confidence and resilience because thatís what you feel like has been stripped away from you when youíve got a post-birth clinical condition. You feel like youíre totally inadequate, youíre lacking, youíre not able to measure up and itís really a bad feeling. Even women whoíve been tremendously successful suffer this. It teaches lifelong skills.
Part of my platform is, I want people to learn skills that they can use for the rest of their lives and I really believe that all of us have a vulnerability to emotional health issues and all of us under the right circumstances, under the right stressors and physical vulnerabilities, will have an episode and that we all need to learn these things.
The skills can be generalized outside of pregnancy and post-birth so Iím not just teaching people what they can do in this moment, Iím teaching what they can do in a lifetime. And it decreases unnecessary contact and reliance on health providers. A lot of times people call in because theyíre lost. They donít know what to do. They donít know what steps to take. And once you help them develop a plan that they can implement themselves, theyíre able to do that a lot more readily.
Weíre gonna also talk about a continuum of care. My most important focus these days is early intervention, which means working with women during pregnancy. So let me give you an example of someone that Iíve seen in this last year.
So I had a mom come in. She was getting ready to have her second baby. She was a very, high-powered executive person but she thought maybe it wasnít going to work out too well for her to have the baby and to continue in her career the way it was and she started to have a lot of anxiety about this. She was worried both that she was going to be letting the people down at work, she was worried that she wasnít going to know how to be herself if she did retire from work, whatever. So she came in during her pregnancy because she was having the anxiety but the anxiety was really about work-life balance.
She and I worked together on that. We did couples counseling and family therapy with her spouse. We did a lot of things to prepare her and ultimately she decided that she wanted to stay home for awhile, that that was really what her heart was wanting her to do. And she was fortunate, her husband had his own company and they were in a position where she could do that. So she chose to stay home, she had the baby and she had a wonderful experience, no problems, no post-birth depression, anxiety, OCD.
Now, did she still need some help adjusting to all the changes? Sure she did. She had two children now instead of one, she had left her job that she had been at for the last ten years. There were a lot of changes in her life and counseling is very effective for life transitions. But she was much better and I really believe if she hadnít come during her pregnancy she probably would have had a pretty severe anxiety episode.
We can also use self-care for women who are symptomatic and we can use it for prevention because all women can benefit from these skills. All women can learn more about how to take care of themselves. How many of you think you take good care of yourself? OK, like a third of us. All right, so you would have to tell me more specifically what youíre doing and let me listen to a little bit of it. But I know the majority of women I see and talk to donít. When we were working on this online, we ran a self-care challenge for 21 days. The first day we had 800 women respond. They were all psyched and ready to go. The second day we had 600 women respond. The third day we had 400 and we stabilized around 200. And we were only asking for 15 minutes a day to practice what we were suggesting. So if that random kind of sample is any indication, thatís about a quarter. And in here itís about a third so maybe weíve learned something over our years of living.
But women are not doing this and these days with all the stresses and demands and pressures and I want to tell you , supermom is alive and well and bigger than ever before. So donít be dissuaded by thinking weíve got this one down because we donít.
Self-management, assessment and education is important whether you are symptomatic, not symptomatic, have risk, donít have risk. Itís just a healthy way to live.
OK. So again, these are guidelines for women at risk for both prenatal and post-birth clinical conditions. They are guidelines for prenatal women who are already experiencing clinical conditions and they can certainly be used for all women to adjust better to pregnancy and post-birth changes.
Self-management during pregnancy involves ongoing self-assessment, monitoring of symptom frequency, severity, when to seek care. Health-enhancing strategies, skills for improving health and preventing illness and post-birth planning about what to expect because again we have not debunked the myths of what motherhood is like and most of the young moms and most of the older moms who have waited to have babies still believethat this is gonna make their life complete. This is gonna be the bliss of all bliss. And while motherhood is the most important thing Iíve ever done and I love it, it is also the most frustrating, challenging, requires more of me as a person than anything I ever imagined to do in life.
So in terms of ongoing self-assessment, how many of you have seen the new Speak Up brochure? Just a handful. OK, well I know Susan brought a lot of them, but the new Speak Up brochure is great in that it has a symptom checklist, it has a risk factors predictor and itís as easy to use as handing it to a mom and saying, you might not be thinking of these things right now and this may not be something you want to think about, or maybe it is, but hold onto this, letís talk about this, letís see, what of these risk factors do you have and are you having any symptoms yet?
Now one of the things I would say about the Speak Up brochure is, it probably needs a few more symptoms added to it, which Iím certain theyíll do over time because the anxiety and OCD is a little underrepresented and in the one we use there are more symptoms for that. But again, itís a great education tool and itís a great way to start the conversation because, like Katherine was saying, women are ashamed, they feel bad. You know, becoming a mom is supposed to be the best thing in the world but if you start talking to people and saying, well, have you had anything go on in the past? Or have you had these times where you felt like you muddled throught, but maybe you were having some issues with it? Women love to talk about things. That is still totally true and people will have a conversation with you if you become a trusting ally with them.
These are the health-enhancing skills that we recommend and, again, I recommend this to everyone. We call it our five-a-day: Nourish your body. I have more moms come in post-birth that are running on empty. Theyíve had coffee and maybe a Pop-Tart and half of their kidís lunch and then maybe they have dinner if they have a partner because, you know, theyíre important to feed. But their bodies are so rundown and depleted and I am here to tell you that you canít have emotional health without physical health. It just doesnít work that way. If youíre running on a diet of caffeine and sugar and carbs, you are not gonna feel good. And you know what? Youíre gonna be much more vulnerable to anxiety, depression, OCD and a host of other emotional health issues.
Get adequate sleep. Katherine said about her sleep, Iím a very sleep-dependent person so when I had to wake up every two or three hours to nurse my baby, as much as I wanted to do that for her, it just about ruined me. And again, all these moms, what theyíre doing with their nighttime so, I have some moms who are so happy when everyoneís in bed and think, wow, now I get a few minutes to myself and some of them actually read a book or look at a magazine or watch a show theyíve TiVoed. But most of them are doing laundry and picking up the kitchen and making sure everythingís ready for the next day and so they donít even start to settle their bodies before they go to sleep. And if youíre gonna jump into bed without beginning to calm your body and mind, guess what? Itís not gonna work too well. And even those of us that arenít prone to anxiety and OCD, our little minds start racing and thinking about everything and pretty soon youíre on this mental treadmill and you canít even get to sleep if you want to. So having a relaxing bedtime routine and getting, it is recommended now, eight or nine hours of sleep for adults, not five or six or four.
So get physical activity, move. And it doesnít have to be working out. It can be going for a walk. It can be walking your baby. It can be anything you enjoy, you know if youíre cleaning your house, put on some music and dance around. But physical activity is really important, again, to our core emotional health and well-being.
Take breaks. This is so hard for me to get moms to do, even though weíve shaved it down to twice a day, ten or fifteen minutes, which sounds like nothing. We used to say take a half hour twice a day but they wouldnít do it. So again, taking breaks, I know so many people that spend their lunch hour working through it that you know come home and do more work. This is not good for us and this is especially not good during pregnancy and post-birth.
And manage your stress wisely. So, unfortunately, you guys didnít get my handout. I have a stress diary and if you come up to me later Iíll be glad to give it to you. So one of the things we do whether weíre seeing someone prenatally or post-birth or whatever is we have them monitor the physical, emotional and relational indicators of stress. So one of the things my husband likes to joke about is he can tell Iím getting stressed when Iím really crabby and nitpicky with him. So he knows the worse I get, the worse stress Iím under and he needs to try and settle me down, which sometimes works, sometimes doesnít. But most of us just have this vague feeling that weíre getting out of sorts and that things are kind of building up and we donít really know what to look for.
And this is really, really important so we have a stress diary, which talks about: what is the stress-provoking situation? What were your thoughts? What did you do in response to it? What can you do different? And how can you have different thoughts? And you put that together and it gives you a pretty nice stress-management plan. So we have to recognize that stress is building. Alice Stomer, who does a lot of work in fertility, did a study and she said that most of us, our panic, our fight-or-flight response triggers 50 times a day so we are under a lot of stress without even knowing it. And then we need to do something to intervene to keep the stress from getting too high. We need to take alternate action. You canít be feeling stress and then go run five or six errands and try to do more work and not rest and not nourish yourself. You have to make a different choice and this is the hardest thing to teach people to do because in our world these days, everyone wants to believe that they can squeeze one more thing in and just have one more trip to the grocery before they pick up the kids and things like that and it doesnít work so that is really key.
Post-birth planning, again, we want to educate all women because there are a lot of myths still about how we feel post-birth and how we donít. And the best time to at least introduce women, not that theyíre gonna listen and not that theyíre really gonna pay attention until it happens to them, is during pregnancy. And I am really fortunate in that I work with mostly OB/GYNs and, many of them, Iíve been doing this for 25 years, refer very early to us. So we are able to see women during pregnancy and work on some of this.
So motherhood is a mix of emotions. Again, itís not all this Charmin, I donít know how many of you remember it so, but they used to have this Charmin tissue commercial where this mom comes out, sheís like three months post-birth and sheís in this flowing, white negligee and sheís got her baby kind of suckled to her breast and sheís waltzing through the house and you look at her and you think, lady, that is not what I went through.
So it is definitely a mix of emotions. Again, itís the most rewarding experience and the most challenging experience. Motherhood is mostly learned. You know, again, people still believe that motherhood is primarilty instinctual and you have this baby and all of a sudden you look at them and you know what to do. Well, we know thatís not true. And for women to hear itís a learned process and just because youíve had your baby donít expect this immediate bonding or immediate love affair is a great relief. So I think thatís really important.
Motherhood is hard work Ė this is what my co-author Ann Dunwald says Ė with delayed return on your investment. You put in a lot of time and effort upfront and you wait years and years and years to really see it pay off, not that the first time your baby smiles and, you know, all those really heartwarming experiences you have arenít worth it, but youíre putting in a lot more on the front end.
Motherhood is only one of many roles in a womanís life. I think the statistic is now that 70 to 80 percent of women are working outside of the home or from their home and motherhood is a lifetime journey. This isnít just something that happens once to us and weíre done after the first year or whatever so you kind of have to pace yourself and this is another reason I think these self-care skills are so important.
OK. Having a baby affects all aspects of life, you know, it kind of turns your world upside down. There are the hormonal changes. There are the emotional ups and downs you go through. There are the self-esteem and identity changes. Who am I now? There are the relationship changes. Again, I deal a lot with couples. Couples feel like, and I think itís the first year after a baby there are the most divorces, but couples feel like theyíve lost each other and they need help being educated that just like other relationships require time and attention to be good ones, so does your marriage. You know, this idea that you get married and then everything works out, itís just a false belief. And we need to be educating women and their partners about these things.
So here are some of the healthy adjustment strategies. We suggest that before the baby comes you work out your division of labor, that you figure out whoís gonna help take care of you and the baby and also help around the house. A lot of people, this is the asking for help part, a lot of women have resources that they donít tap into because either they think that they should be doing it all or, you know, theyíre afraid to ask for help or their moms did it all or whatever the fallacy is. And when you start to talk to them about, well, do you have a neighbor? Do you have a friend? Is there someone from your church or religious group that could help out? You discover, wow, thereís a lot more available to them.
And having an emotional support network. This is the whole idea of peer support. I have one client who, she moved to Florida, developed pregnancy anxiety because, guess what? Her OB told her it was up to her to decide if she wanted to stay on her medicine or not. So she thought, well, Iíve read that medicine might not be the best thing so Iíll go off of it. And she was fine for the first month or two and then she started crashing and burning. So now she is in a new community, her husband has a new job, sheís not working anymore and so sheís starting to get situated with some of the resources in the community which I have really encouraged. Sheís going to prenatal yoga, sheís getting involved in a moms group and all these things, building this foundation is really, really key.
What are you gonna do about your maternity leave? Thatís a big issue now. We always recommend, if you can, take eight weeks. I know a lot of women are only being able to take four to six weeks. Four to six weeks is not enough to adjust to all the changes youíre going through. Also, donít have your mind made up about whether, if you are fortunate enough or if you are willing to adjust your lifestyle, youíre gonna stay home or work. Because I see a lot of women who think itís gonna be one way and it turns out to be another. Maybe they thought theyíd go back to work but they love their baby so much and they love being there so much they want to stay home. Or they decide that they thought they wanted to stay home but itís making them crazy. So they want to go back to work. Again, every woman is different and the main thing we want to teach the women we care for is whatever you decide, make a decision that honors whatís in your heart.
And then balancing personal and family needs as well as breastfeeding. Breastfeeding is a huge issue and itís something we need to discuss before the baby comes.
OK, so we want to, especially for our high-risk moms and moms who are already symptomatic, help them develop a healthcare safety net. So who are there health providers? Do they have a physician thatís going to be available to prescribe them medicine if they need it? If theyíre on medicine, is that going well? How, what kind of a relationship do they have with that person? We want to keep in touch with them because a lot of times, things develop over time and, again, itís about having a relationship with someone. If you have a relationship, you can talk to them, you can guide them but you need to do that as early as you can and hopefully thatís during pregnancy.
And you also need to talk to them about post-birth support, whoís gonna be there? Whoís gonna help them with what? And then emotional health. So if youíre seeing someone and you really think they need to see a counselor, get them to a counselor before they deliver. You donít want to leave them in the lurch and then have problems develop later.
Self-management post-birth. So we also think that this is important. After the baby comes, for moms who have clinical conditions, for moms who are at risk with and without symptoms and, again, for moms who are experiencing normal adjustment to improve their health and well-being.
The self-assessment again you want to use with everyone. You all use the Edinburgh, thatís a great tool. It gives you a general idea of whatís going on, again for anxiety and OCD and those kinds of conditions, itís really not thorough enough. But hopefully you can supplement that with a conversation or a clinical interview and most of these measures are extremely easy to use and it opens the door to having a conversation.
When weíre using self-management, we want to be sensitive to the level of acuity because you canít just self-manage a woman whoís got moderate to severe clinical conditions. Sheís gonna need more than that. Sheís gonna need to have probably a combination of counseling, medicine, support and self-management.
Self-management is always included as part of treatment, in everything we do in my group. And some women prefer to start with it because Iíve had a lot of women who will come in and, again, donít want to be on medicine. Maybe some other family members have dissuaded them from being on medicine, think itís a poor idea to be on medicine and so they want to start with, what can I do to help myself feel better? And thatís where we meet them and then we say to them, you know, weíre willing to try this for a couple of weeks but if itís not working, weíre gonna go to a higher level of care.
The initial goal of intervention is acute care but self-management skills, whether you have someone, again, whoís really struggling or not, are always important.
So what do we do for self-care with women once theyíre post-birth? Again, we initiate the five-a-day and hereís an interesting thing. So when we started teaching this in classes and we were teaching all post-birth women, we thought, oh, weíll just hand them these things that they can do for self-care. So we gave them a relaxation CD. We gave them the handout that weíre gonna go through in a little called Practicing Self-Care. We gave them recommendations based on knowing a little bit about their histoary and what they could do. We sent them home and guess what? They came back and they hadnít done anything.
And we were like, wait a minute, you came to see us. Weíre supposed to be the pros. We gave you what you needed to feel better. Why didnít you do it? And then we started hearing all the barriers and obstacles. So, long story short, if youíre gonna teach people self-care you have to start by addressing all the obstacles to care. And those obstacles are: feeling other things are more urgent, guilt, mother guilt is a big obstacle. They feel like if theyíre not spending every single minute Ö I have more young families who have sleep issues and children who have trouble soothing themselves because the moms literally donít put them down and if the babies start crying, pick them up that exact minute.
So for me, to talk to that mom about practicing self-care, sheís like, are you from Mars? You know, sheís not gonna listen unless I begin to address with her whatís getting in the way. So we talk about guilt, we talk about the fact that a lot of women never learned how to take care of themselves in the first place. You know, itís the whole idea that nice girls always put everyone else first and many of us come by that honestly. We had moms who modeled that kind of behavior, who were Joan Cleaver-ish or you know whatever weíre talking about these days, back in the day. And unless you help give women permission to take care of themselves, they wonít.
So weíve started addressing self-care on the front end. I think thatís actually in the first class we do now because we want them to go home and do something, not come back and tell us, oh by the way, I didnít do something because it was too much. Other things got in the way.
We help them minimize the obstacles to self-care and now Iím gonna have you guys practice. So thereís a sheet in your handout called ďPracticing Self-care.Ē And this is what we use with everyone whether weíre doing classes or seeing them individually. OK, so I want you to take a few minutes to fill it out and then Iím gonna ask just a couple of you to volunteer what are some of the obstacles you come up with?
Oh and by the way, Iíd like to have you guys commit to do this for the next month, just one small thing, 10 or 15 minutes every day. You know this is one of the things we say a lot of times. We donít wait to have cavities to know to brush our teeth twice a day. We brush our teeth twice a day so we donít get cavities. We need to do the same things when it comes to our health, especially during pregnancy and post-birth which are vulnerable times in a womanís and familyís life.
OK, so is anyone far enough along to volunteer an obstacle? Is anyone brave enough to volunteer an obstacle? OK, what did you come up with?
Youíre on the phone too much. OK, do you, do you make dedicated time to turn your phone off during the day? No, I understand. Right, right, right, right. Because what we do at my house is we have an answering machine and we donít answer the phone after 9. And you know what? I figure that if itís a family member, someone who really needs me, theyíll figure out a way to get in touch.
So, again, we can let these things get in our way or we can say, no, Iím gonna make a different choice. Because all this stuff that weíre bombarded with day after day after day has really gotten in the way of us making dedicated times that weíre not talking or doing and just kind of resting and letting ourselves quiet and calm down and begin to prepare for the next day.
OK, one more comment. Yes. Oh great and itís not that I havenít done that myself, I have. But what I remind myself because I started to do it the other day is, really, how urgent is this? Is this a matter of life or death? I mean, I want to get it done because I want to have fewer things on my to-do list, right? But then I remind myself, oh, what about getting to bed? Oh, what about the sleep that I need? What about letting my mind start to chill out? So, again, Steven Covey says it this way, we spend too much of our time doing things that are urgent but not important and if weíre going to lead balanced lives ourselves and if weíre going to create healthy families and healthy communities, we have got to switch because this is really part of whatís undermining things in our country these days.
OK. This is what we teach women with anxiety. We take the stress diary, whether we havethem fill out the worksheets or they develop their own worksheets. We have them identify their stress cues and triggers and then we work to help them change their worried and stress-provoking thoughts. So, like the thought of, Iíll use the example we just had, if I donít send this email out by 10 oíclock tonight something dire will happen. OK, now how likely is that really to occur? Chances are, itís not. So we say what is the evidence that something catastrophic or something thatís really going to become a problem is gonna develop? Most of the times, itís not. And then we ask them, well what is the evidence that this could develop? When was the last time you sent an email or didnít send an email at 10 oíclock and something really bad happened? Chances are, it didnít.
So we walk them through rethinking the emotional thinking and coming up with what is logical and evidence-based. Thatís CBT in a nutshell, the cognitive therapy part. Changing the stress-intensifying responses, so if I have a mom thatís been running around all day. Sheís not eating, maybe sheís not sleeping well because the baby is getting up and then what she wants to do, is she wants to do work while the babyís actually taking a 20-minute nap, I say, donít do that. This is not helpful to you. You have a choice. You can restore some of your energy and vitality and not be impatient, frustrated, maybe angry with your child because youíve actually rested. Or you can choose to run around like a crazy person and you know what? Itís gonna produce a negative outcome so we talk that through.
I have people practice daily and, again, Iím lucky if I get them to do it a few times a week but some of them do it daily, what we call stress-reducing strategies, including deep breathing, meditation, progressive muscle relaxation and mindfulness. How many of you have heard of mindfulness? Is that something?
OK, so mindfulness is basically focusing on the present moment. So I get a lot of moms who come in and what are they doing? Theyíre not focused on the present moment, theyíre catastrophizing about their child not being able to get into the preschool that they want and their child is six months old. And, you know, it sounds funny but this is not an uncommon characteristic of people in our culture these days. We are either living way ahead of ourselves and thatís what we call future catastrophizing and the way we talk about it now is that produces anxiety. Or we are dwelling in the past and riding the garbage train, as Virginia Satire liked to call it, and that produces guilt and depression. We are so far from being focused in the present moment that we donít even taste what weíre eating most of the time. Again, thatís if weíre sitting still while weíre eating and not grabbing something from our car or standing up at the computer or whatever.
So these are really key skills and, again, theyíre not just skills for the people weíre seeing, theyíre skills for us too. Because if you arenít walking the talk, people know it, it comes through. And you wonít be as good at educating them about the changes they need to make. So hereís some other techniques we use if weíre working with someone who has anxiety and/or depression thatís resulting in negative thinking. We use thought-stopping, distraction works really great and, you know, again, this works for women with severe anxiety disorders when theyíre getting the correct adjunctive treatment just like it works for moms who arenít symptomatic and arenít at risk.
We use cognitive therapy and, this again, I canít say enough, preventing fatigue, emotional exhaustion, physical exahustion, factors which increase our susceptibility to stinking thinking. So again, the example I gave with my husband. I know that Iím out of sorts when I start picking at him, not that he doesnít deserve it, but usually Iím calmer than that. But when Iím rundown, I am 95 percent more likely to respond in those way, to not hear what someoneís truly said to me. This is a big deal and itís a particularly big deal with moms.
So, what do we really want to teach women to expect post-birth? That itís a change in every direction. The world turns upside down. There are many new learning opportunities but there are also many challenges. And Piaget referred to this as a developmental crisis. He said it is a time of heightened potential and heightened vulnerability. Everything you thought about life, everything you thought about yourself, all those ways you used to measure your esteem, it all turns upside down and changes. And again itís a transformative life experience. In spiritual terms, they call it a liminal experience which is where you stand between two thresholds Ė the threshold of whatís been and whatís known and whatís becoming and what youíre becoming. And I think that motherhood is such a definiing moment in a womanís life and, again, can teach you so much about your full potential as a person, that it behooves us to teach all pregnant and post-birth women and ourselves what we can do to really balance our lives to practice self-care, to bring our best selves to the world every day so that we have that to give our children and our families.
These are some other things, you know, again, that we do clinically to help people deal with the changes that you go through that are unexpected. Keep expectations realistic. Donít compare to other moms. You know, I hear people say all the time. Oh, she looks like she has it all together and Iím like, oh, you have no idea. You have no idea. You have absolutely no idea.
And identify and reach out for emotional support. Structure your day. Have a sense of humor. Make me time, time for self-care. Spend time with your partner and friends. You donít stop being a person just because youíve become a mom. You still have needs and, again, to nourish other people we need to nourish ourselves. Ask for help before youíre exhausted. Develop outlets for stress relief. And create your own motherhood journey. Who I am as a mom is different than everyone else in this room. No two of us do it the same way because weíre not the same. And what I choose and what you choose, as long as itís a way that honors whatís in your heart and honors the other people in your life and helps support emotional health and balance and well-being, to me is fine. You can do it a hundred different ways and it still works equally well.
So, all moms can benefit from self-management, assessment and education. Self-management improves health outcomes. It fosters lifelong skills and it builds confidence and self-efficacy. I always have trouble with that word.
And you all have probably heard this quote before, but if you give a man a fish, he can eat for a day. If you teach a man to fish, he can eat for a lifetime. And thatís what I think itís all about. Thank you.
Audience member: Hi.
Diane Sanford: Hi.
Audience member: Iím a social work in the neonatal intensive care unit.
Diane Sanford: Oh wow.
Audience member: Ö supporting moms there, trying to get them to do some of the self-care, especially being in the NICU for a month, two months, three months, even if itís just a week or two weeks. Obstacles? The biggest obstacle is this mother guilt, I have to be at the bedside, I cannot be away from that child, I need to be there, I need to be there. Even just to get them to a support group in the NICU is difficult for a half hour. Do you have any recommendations or suggestions, how to help these moms overcome that mother guilt, especially in the NICU?
Diane Sanford: Well, you know, again, what we do primarily is we talk to them about if youíre going to be the best mom you can for your baby and have the energy to be able to make decisions or handle situations, especially in the NICU, that you might have to decide that are very significant, if youíre rundown, depleted, exhausted, donít have anything, youíre not gonna be able to handle those situations and again to be, itís hard to figure out the words to use, but as caring, as gentle, as responsive to your baby. And, really, you know, thatís why theyíre so overconcerned and so negligent of themselves. So we help them to understand that and we help them to Ö I wanted to read you guys something. This is what one of the moms said, she was not a NICU mom but had just come back from a week at Disney, you know the dream vacation, with her family. And she said, I didnít have any time to myself, it gets me into a slump and it takes me a long time to get back out.
So what we teach again is that if you put a little time and effort in on the front end, it will pay out in large benefits on the back end. So thatís how we try to frame it for them.
Itís an ongoing conversation. Yeah, yeah.
OK, so your assignment is Ö
Audience member: I just wondered, how do I get the Speak Up brochure?
Diane Sanford: Um, they should be out in the hallways now and I would advise again that everybody get them because theyíve just been redone. Theyíve got a great list of symptoms and risk factors and theyíre just a perfect, kind of non-confrontational way to open the door.
OK, so your assignment is go home and practice and then youíll be able to help other people do this better. Thanks.
Marianne Moore: OK, weíre going to take a break for 15 minutes and please come back at five minutes after 11 so we can stay on track. Thank you.
Marianne Moore: Can you take your seat please? Thank you ladies, gentlemen.
Itís my pleasure to introduce our next speaker, Stephanie Zerwas. Did I say it right? Iím so sorry.
She is associate research director in the Eating Disorders Program of the Department of Psychiatry at the University of North Carolina at Chapel Hill. Dr. Zerwas received her Ph.D. in clinical and developmental psychology from the University of Pittsburgh and research program at the University of California, San Diego.
Her research focuses on social cognition, the uniquely human capacity reflect on emotions. She conducts individual, group and family therapy and is particularly interested in how people process social information in online therapeutic context. Her background in developmental psychology inspires her exploration of how all eating disorders affect all members of the family. In particular, she hopes to examine how eating disorders affect parent-child communication and relationships.
She is interested in investigating how environmental experiences interact with the genetic predisposition for eating disorders across the developmental life span.
So please welcome Stephanie Zerwas.
Stephanie Zerwas: Hi, Iím so excited to be here today and so thrilled to hear such great talks and excited to be in New Jersey. Iím going to present from a slightly different perspective today. I am a researcher, Iím a scientist so a lot of what Iíll be talking about today comes from my clinical experience but also Iíll be talking about our research program.
So, Iíll give you a brief summary of what eating disorders are. I donít suppose youíve never heard of eating disorders before but itís good to remind us of the symptoms and signs. Iíll be talking a little bit about our eating disorder sample that weíve been following in Norway. This is a really exciting data set that Iíll tell you more about today. Using that data set, Iíll talk about some of our research findings as well as some of the clinical implications from what weíve been learning about eating disorders during pregnancy and the postpartum period. And then Iíll talk a little bit about some of the future directions for this research.
So what is anorexia nervosa? Itís a baffling disease. People often find it hard to understand how someone can get down to a body weight that is this low, below 85 percent of their ideal body weight. Usually this correlates to a BMI of below 18.5. Women with anorexia nervosa have this intense, intense fear of gaining weight that for, you know, the rest of us who enjoy food that can be hard to understand sometimes. They have a distorted body image. Early on, they see themselves as extremely, extremely overweight or they see fat deposits where there arenít any. They have an extreme focus on shape and weight. They often will deny they have an illness, itís just everyone else needs to get off my back. Iím fine, Iím doing OK. And that experience of anosognosia, that Iím actually not sick when I am sick, is hard for other people to break through. They also experience amenorrhea so they lose their periods.
So itís about 1 percent of women and much more common in women than in men. We are seeing increased numbers of boys and of men coming into our clinic struggling with anorexia nervosa as well.
So bulimia nervosa involves recurrent binge eating and people will describe this sense of food being irresistible. It is hard to stop once you get started. You have one triggering event or you find yourself starting to pick or nibble around the kitchen and then itís hard to stop the binge episode once you get started.
Thatís followed by some sort of compensatory behavior. After the binge, people describe feeling just out of control, hugely embarrassed and the desire to start anew, to wipe the slate clean and do that through vomiting, excessive exercise or fasting.
Sometimes people will also describe that their anxiety goes down with vomiting, that after purging they just feel a lot better. Again, you have this extreme focus on shape and weight. Shape and weight are the most important things in how they evaluate themselves as a person.
And about one-and-a-half to two percent of women struggle with a binge eating disorder or bulimia and itís more common in females. So I went on to talk about binge eating disorder already and this is my next part.
This involves recurrent binge eating without the compensatory behavior. Women and men with binge eating disorder are often overweight or obese and theyíre frequently distressed by their binge eating. Because being overweight or obese is so stigmatized in our society, they frequently donít know that theyíre struggling with a disorder. This disorder goes underrecognized and underdiagnosed just so commonly and if we could educate people about this a little bit more I think they would realize that theyíre engaging in binge-eating episodes. Itís not just a loss of willpower as they start to think about it themselves but itís real, true binge-eating episodes that can be addressed. So this is more equal across the sexes, about three-and-a-half percent of women and about two percent of men struggle with binge eating disorder.
Thereís an emerging diagnosis of purging disorder. This falls into the EDNOS category, eating disorder not otherwise specified, and this involves recurrent purging without the binge eating behavior. So people with this diagnosis will have vomiting or use laxatives or diuretics after what is a normally sized meal. So theyíre not engaging in binge eating, theyíre not having that sense of loss of control over their eating but theyíre still purging, sometimes after every meal. Weíve had patients who come in who report purging four, six, seven times a day. Itís about one-and-a-half percent of women and, again, more common in women. And much less is known about purging disorder, much less is known about the people who are struggling with this.
When does anorexia nervosa onset? When does it start? So, you can see that really around adolescence and around, especially late adolescence, is when we see the most onset. Interestingly though, weíre starting to see it at younger and younger ages. Weíre starting to see kids come in to the hospital who are struggling at 10, 11, 12. Oftentimes, they have a co-morbid anxiety disorder, theyíve always struggled with separation anxiety or OCD. And this starts to translate into their food intake. And then weíre also starting to see it in older women. Now these are not women who have a recurrence of their eating disorder, these are women who are starting to develop anorexia nervosa in their 40s and 50s for the very first time. It seems like thereís something that happens hormonally or in life around meno pause and peri-menopause that can trigger a whole cascade and lead to the emergence of eating disorder symptoms at this time.
So what does this look like? Anorexia nervosa is visible, you can see when someone is markedly underweight. But these are the things you canít always see so frequently women are dehydrated, they have severe electrolyte imbalances so theyíre having low sodium, low potassium. Theyíre experiencing osteoporosis or osteopenia. Their bones are frequently very fragile. And they also will experience this lanugo hair. So lanugo hair is a way that your body reacts to being malnourished where it starts to try to protect your vital organs. In this case, itís growing on the spine of this woman. Youíll also see peach fuzz on the cheeks, thatís common.
Women with anorexia have this low body temperature. Frequently their blood pressure is very low. Especially in adolescence youíll see that they are just not growing. You know, hereís this time of prime growth and theyíre so malnourished their body isnít able to get what it needs in order to grow.
It can be a very difficult and intractable disorder and honestly we donít have, we donít know what works yet. Family-based therapy works really well in adolescents but for adults with anorexia nervosa there are no effective treatments right now. Fifty percent of the women develop, go on to develop bulimia nervosa and the rates of complete recovery are horrible. They could be so much better Ė between thirty and seventy percent. And twenty-five percent go on to develop this chronic relapsing course. Itís amongst the top causes of disability in young women and post-hospitalization relapse rates range between thirty and fifty percent.
So people will come into the hospital and theyíll be refed and theyíll be doing, it seems like theyíre doing much better but stepping out back into the world and to an outpatient treatment team is such a huge stepdown in care. So frequently you experience this revolving door of the hospital, that theyíll step down into outpatient care, itís too much, then they come back into inpatient treatment. And the highest risk of relapse is in this one year of post-hospitalization.
It also has the highest mortality rate of any psychiatric disorder. So this is Isabelle Caro, she is a French model and did a lot of work to do public service announcements for the dangers of anorexia, got a lot of attention for her illness as well. And she recently died in November of 2010 after a two-week lung infection. So itís, you know, about five percent of those with anorexia will die from complications of the illness, also die from suicide. And that having a BMI of below thirteen is associated with this increased risk of sudden cardiac death.
So bulimia nervosa, unlike anorexia nervosa, youíre not able to see the physical manifestation as easily. But there are some things that you can see as well. So you have, again you have this electrolyte imbalance and one of the things I want you to take away with today is that bulimia nervosa is a deadly disease. The electrolyte imbalances can lead to sudden cardiac arrest and oftentimes people who are purging donít know that thatís a consequence and effect of their purging.
It can also lead to real trouble with acid reflux, esophageal rupture, loss of enamel, frequently people struggle terribly with their teeth after a chronic course of bulimia. And sometimes you can see this the parotid glands become quite swollen. People describe it as almost chipmunk cheeks. If you see somebody with that presentation they might be purging quite a bit. GI complications, the whole system just slows down so normalizing eating can lead to a lot of bloating and lot of feelings of discomfort, irregular menstruation and loss of this normal bowel function.
Women with bulimia nervosa are frequently depressed, theyíre anxious. Theyíre engaging in a host of other impulsive behaviors as well. Frequently, alcohol of drug abuse is common, compulsive spending. Theyíre frequently irritable, sexual impulsivity is more common. What Iím showing you here is Russellís sign, which is the bruising and sort of the, what happens to the skin after repeated uses of the hand to throw up.
So EDNOS outcome, about sixty percent of those who come to us for treatment actually get put in this EDNOS category. It becomes sort of this sort of eating disorders garbage can, itís a wastebasket diagnosis. And with the new DSM, theyíre trying to find ways to not have such restrictive diagnoses for anorexia and bulimia that people, so many people, end up in this category. But, in general, itís not benign. Frequently people with EDNOS have an increased risk for suicide and theyíre struggling just as much as people with the full-fledged eating disorders. Sometimes they get frustrated with this diagnosis. Well, it says eating disorder not otherwise specified. I donít even get a label, I just get thrown in this other category. And so they think that that means itís not as severe. Itís just as severe, itís just as dangerous.
Binge eating outcome. Oftentimes, people with binge eating disorder also are struggling with insomnia, sometimes theyíre also struggling with night eating where theyíll describe going to bed, waking up and eating in the middle of the night. Smoking during pregnancy is more common in this group and continued binge eating is more common in this group as well. And weíll talk a little bit about some of our research findings from this Norwegian sample. Frequently, they also have a host of other medical complications Ė so emergent metabolic syndrome, Type 2 diabetes as well.
So where do eating disorders come from is the million-dollar question. And frequently in the past, people blamed families. Families got blamed left and right for eating disorders. These are dyfunctional families. If your daughter has an eating disorder, youíre dysfunctional, you have, youíre overly controlling, youíre enmeshed, youíre intrusive and thatís the reason sheís developed this eating disorder because it was her only way of expressing herself. So families get blamed left and right.
The individual gets blamed for the eating disorder frequently, right? So these are people who are just too vain, too overly controlled, too focused on themselves and too perfectionistic and so we need to blame the individual as well.
Society gets blamed for eating disorders. So, you know, we have such a focus on health and exercise and diets in our society so can we lay the blame on society for the magazines, Star magazine, you know, I lost 15 pounds in one week and can we blame society for this? Yes, society is a contributing factor but itís not, we canít blame society for the fact that eating disorders exist.
And, as usual, mothers get the blame, right? So mothers always are blamed whenever anything happens with their children. So these were mothers who were too focused on their appearance. Mother-advocate Laura Collins talks about how when her daughter was diagnosed with anorexia, the therapist said, well, what do you do at home? You must be communicating your own struggle with food as well and later the therapist decided it must be because when she stood in the mirror she would turn her body this way and look at herself in profile and that must be the reason her daughter developed anorexia nervosa.
Mothers hear this wherever they go and if they go to people who are not educated in eating disorder, they frequently are told they should not be involved in treatment, they should leave the room, theyíre toxic, they are the ones who have created this horrible outcome for their child.
So, Iíve given you the past, Iíve given you the myths that people have about eating disorders. How can we describe where they do come from? How can we use what we know from research, from science, to break down some of these stigmas and some of these approaches that people have taken this far that lead to so much stigma and so much embarrassment on the part of parents and families?
So what we do know is that eating disorders run in families and that eating disorders are heritable diagnoses so genes play a substantial role in the liability to eating disorders. About fifty to seventy percent of the variation between people in eating disorder diagnosis is due to their genes and thereís no evidence that shared environment Ė your family environment Ė has anything to do with being a risk factor for the development of eating disorders. They do run in families.
But the environment is also really important. And we need to talk about how genes and environments interact. So the genes and environments, thereís an interplay between them and a correlation and the epigenetic factors - and weíll talk about what those are a little bit more Ė are most likely important and operative and are the biological underpinning for how genes and environments interact.
The other starting point we need to take though is that women with eating disorders reproduce.
For a long time the assumptions were that these were women who werenít partnering, they werenít getting married, and they werenít going on to have babies. But women with eating disorders are having babies, they are struggling in the postpartum period and they are going on to have kids who are at an increased risk, based on their genetic load, for a later eating disorder diagnosis.
So one of the things I like in my clinical work is talking about analogies and I frequently find that it helps to think of an analogy when describing these things. Because these are complicated, this is a complicated etiology. Itís multi-variant, there are a bunch of things coming together. And one of the things that I find helpful is to talk about that eating disorder risk gene as being like a seed. So you carry that seed with you and as you develop there are environmental conditions that are either gonna make that seed not grow or that are gonna contribute to the growth of that seed.
And one of the things that people will say is, you know, they might have had something traumatic happen. They might have had a life event happen. They went through puberty and, all of a sudden, their hormones started changing and their body started changing. And so that was like pouring a little water on that seed and it started to grow.
Or they went on their very first diet. That is like Miracle-Gro for eating disorder. So going on a diet and having that biological consequence of the diet, for somebody with an eating disorder risk, itís not like a lot of other people who go on a diet. So theyíll describe that it made them feel calmer, it made them feel less anxious and they discovered that this was a way that they could feel better.
So frequently that is like Miracle-Gro. Having, experimenting with fasting, which many people do, is another thing that causes this eating disorder seed to grow. And it can lead to, you know, this fully fledged plant and itís not anything that anybody meant to happen but yet along the way this has grown and now itís time to deal with the eating disorder.
One of the risk factors that we know from environment though is that perinatal events increase the risk for anorexia nervosa by almost four percent. So, if your mother struggled in her pregnancy or you were born premature, especially if you were born small for your gestational age, your risk for anorexia nervosa is much higher and itís independent of any other socia-demographic confounders.
So it seems like this, this window in pregnancy and the early postpartum is a critical period for later development and later development of this psychiatric illness. Interestingly, though, pregnancy outcome in anorexia nervosa leads to these complications. So, if women are struggling with anorexia during their pregnancy and their pregnancy weight gain is difficult and inadequate, then we know that pregnancy outcomes include things like pre-term birth, low birth weight, prematurity, theyíre more likely to have stillbirths, low Apgar scores and increased Caesarean rate. So maternal undernutrition during pregnancy can have severe consequences for the baby and for the babyís development but these consequences arenít just immediate to that time period, they also can predict things that may happen later down the road when this baby then becomes an adolescent and starts to go through puberty or through adulthood.
So this is a seminal paper done by my mentor, Dr. Cynthia Buelick, who heads up the Eating Disorders Program and UNC Chapel Hill. And she talked about this as the anorexia cycle of risk so that a mother with AN is more likely to have these labor and delivery complications, more likely to have a child with prematurity, more likely to have a child whoís small for gestational age and that, in turn, cycles back and predicts that the subsequent generation, the offspring, the kids, will also struggle with AN. So you have this cycle that feeds on itself.
Weíve since gone on to expand this cycle of risk analogy and are looking at it in terms of pregnancy exposure and childhood exposure not just from moms with AN, we talked about this anorexia nervosa cycle, but thereís also a secondary cycle of moms with binge eating disorder. So frequently during pregnancy, moms with binge eating disorder theyíll continue to have these large binge episodes which leads to a lot of glucose disregulation in their system but also in their childís system. And that in utero exposure to nutritional disregulation leads to the likelihood that theyíre more likely to be large babies, to be overweight later in their lifetime and moms with binge eating disorder also are more likely to use food as a reward in their parenting and to model binge eating behavior at home as well.
So that that cycle can feed on itself as well. So you have the two cycles of anorexia and binge eating disorder and they work in concert.
So, I want to tell you a little bit about Moba. Moba is this large cohort in Norway and itís about 100,000 mothers and babies and the sample is recruited from all over Norway. They are recruited after their first fetal ultrasound and then this is a collaboration now between the University of North Carolina at Chapel Hill and the Norwegian Mother and Child Cohort Study. And this is part of the Norwegian Ė Iím not gonna even try to, sometimes I try to say the Norwegian Ė so itís the Norwegian Institute of Public Health.
And the Scandinavians know what theyíre doing. So they have these large registries and theyíre able to look at the development and also able to tie it back to their medical registries. So we can take these data and tie them back to not only the motherís birth registry but her motherís birth registry and look at it across multiple generations. So itís a really exciting data set, itís a really exciting opportunity to be able to look at this. And we wouldnít be able to do it without Cindy Buelick, again, who has this amazing knack for languages and is able to straddle both worlds.
So Moba allows us to look from infancy, and moms get repeated questionnaires throughout infancy, then through childhood and then adolescence. And these are kids who are now around eight or nine years old and the plan is to continue to follow them through adolescence and into adulthood as well so itís a really exciting group.
About forty percent of the moms in this study who are approached go on to participate. About eight percent of those moms have partners who participate as well and about eighty-five to ninety percent will respond to each questionnaire and, like I said, the oldest children are now about age nine. They do tend to be a little more educated than the average in Norway but theyíre a pretty representative sample.
So Iím gonna talk to you about a subsample of this group. These are about fifty-one thousand that weíve already published some papers on. The nice thing about this is that we can replicate some of our findings so frequently we find things that are so contradictory in the literature and what weíre doing is splitting it up into the first fifty thousand and the second fifty thousand to see if what weíre finding in the first fifty replicates in the second group.
About forty-four women had anorexia nervosa immediately before becoming pregnant. So this is unique. Frequently, people will ask about lifetime eating disorder history. Weíre really able to ask about their eating disorder history immediately before they became pregnant to see the possible effects on childrenís outcomes. About four hundred and seventy-seven had bulimia nervosa, about two thousand, twenty-five hundred or so, had binge eating disorder immediately before becoming pregnant and about fifty-four had EDNOS-P or purging disorder. About forty-eight thousand then had no eating disorder diagnosis.
So this gives you sort of a sense of the data timeline that weíll talk about today. Iím really just talking about up until thirty-six, the time that kids are thirty-six months old or so. So they get questionnaires during the pre-pregnancy period and seventeen and twenty-nine weeks gestation, around six months and then again at thirty-six months postpartum. So, six months, eighteen months and thirty-six months postpartum.
So Iím gonna talk about three different periods here. First, the pregnancy period, then the first six months postpartum, and then the six to thirty-six months postpartum. So we had a series of questions that we were interested in asking from this data set. One is, are pregnancies planned in the moms with eating disorders? What happens to eating disorders during pregnancy? How do moms adapt to the fact that theyíre pregnant? Does that possibly change their behavior? What do women with eating disorders eat during their pregnancy? What are they consuming?
We also were interested in how much weight do women gain during pregnancy and lose during the postpartum period. What birth outcomes are associated with eating disorders in women? And do women with eating disorders breastfeed?
Finally, this is not from this data set but from a different one. Iím gonna talk a little bit about eating disorders in our clinic population at UNC Chapel Hill. Iíve teamed up with Dr. Samantha Meltzer-Brody whoís done some excellent work and we actually surveyed our patients so Iíll talk a little bit about that group as well.
So are pregnancies planned? We know that women with anorexia nervosa are at higher risk for infertility and that amenorrhea, loss of period, is really prevalent and so we were wondering whether the women with anorexia in the sample were more likely to seek out IVF treatment or doing other sorts of treatments and were more likely to plan their pregnancies. And so we compared the prevalence of unplanned pregnancy in women with anorexia nervosa and without.
So are pregnancies planned? Actually, no, theyíre not. About fifty percent of women with anorexia had unplanned pregnancies as compared to about eighteen, nineteen percent in the women without anorexia and theyíre much more likely to have had an abortion before this pregnancy. So about fifty percent, I mean, itís a pretty large group, just didnít plan on getting pregnant. And how do we interpret these data? We think what it means is that many women think that because they donít havea period they are not able to get pregnant so that amenorrhea equals anovulation. And they just make assumptions, I donít have my period, this is contraceptive enough, I donít have to worry about it. And yet, they are able to get pregnant and so they assume theyíre not fertile and yet they are.
And so, really important to educate women in OB practices, educate our women who we see in therapy that even if theyíre not getting a period, theyíre still able to get pregnant. And also, the other thing that lets us know is frequently women with anorexia will describe sex as being unpleasant. They donít like revealing themselves, they donít like being nude in front of another person and they are having sex even in the absence of libido and even with these various, women with anorexia are still having sex. And so anorexia is not an effective contraception.
So what happens to eating disorders during pregnancy? Many researchers and many clinicians think about pregnancy as a transformational moment for a woman with an eating disorder. It gives them new reasons to change their behavior. Even if theyíre not going to eat for themselves, theyíre gonna to eat for the baby. And so, could we capitalize on this moment in treatment to say, OK, youíre starting to eat, can you continue this later? So weíll talk about patterns of remission, continuation and incidence of eating disorders during pregnancy. Looking at this in anorexia nervosa is really difficult because the core feature of anorexia nervosa is that you have to be underweight and itís hard to diagnose anorexia in somebody who is pregnant and is gaining weight.
And so they, yes, they might not have, they might not technically have anorexia nervosa anymore because their weight no longer shows that, even though theyíre still struggling. So for this paper, we sort of sidestepped that question and did not look at women with anorexia nervosa during pregnancy and we, thatís something that weíre gonna go back and look more closely in the future.
In the BN group, about point-seven percent had bulimia nervosa before becoming pregnant and then during it reduced to about point-two percent. BED actually increased during pregnancy which was a surprise. We werenít expecting that and Iíll talk a little bit more about why that happened. EDNOS-P again also went down.
Thereís something I want to make sure that everybody takes away with too as well - women with eating disorders believe that purging during pregnancy is OK and fine. And the reason they believe that is they see their friends or theyíve heard about other people who had hyperemesis or who had really bad morning sickness and they threw up so it canít be a big problem if I throw up. And so thatís the other part that we really need to do education on.
So this shows you the pattern of remission and continuation. About thirty-seven percent remitted, about fifty percent of the purging disorder people remitted, about sixteen, thirty-two and six percent continued with their eating disorder during pregnancy. Interestingly, we had seven hundred and eleven new cases of binge eating disorder during pregnancy. And so people were just starting to binge for the very first time.
And what, what is leading to this? It seems like the moms who started binging during pregnancy were less educated. They had lower education, they were more l ikely to be smokers, they had at least one previous birth, interesting, they were more likely to be immigrants in this group as well. And they are also more likely to have had an abortion prior to this pregnancy. So, you know, weíre really starting to think that there is this matrix of disadvantage that poses a risk for somebody with, to develop BED during pregnancy. Youíre adapting to this neuro-endocrinological adaptations in pregnancy. You have these changes in your metabolism, your appetite, your mood and that people might be responding to that with binge-eating episodes. But you also have to keep in mind that communications about whatís acceptable to eat during pregnancy are frequently skewed. A lot of people are pushing food on you at this time. You have to eat for the baby, youíre eating for two, so that also might set somebody off into a binge-eating episode.
And so thereís a psychosocial piece as well, that you have the psychosocial stress in disadvantaged women leading to an increased rate of binge-eating disorder.
OK, so what are women eating during pregnancy? Interestingly, women with BED are eating, are consuming less folate, less vitamin K, less vitamin C and less fruit. Theyíre consuming more cakes, candy and more desserts. And interesting, all eating disorder groups reported elevated consumption of diet soft drinks and sugar substitute. So theyíre consuming a lot of aspartame and NutraSweet and Splenda during their pregnancy and throughout their pregnancy.
This is important. Maternal nutrition during pregnancy is extremely important because there are two mice, you notice. You might be wondering, what do mice have to do with pregnant women? These are two mice who are genetically identical. Theyíe exactly the same genetically, they were just fed different things during pregnancy. So the mouse on the right, the momís diet was supplemented with folic acid, supplemented with choline and they end up being lower weight, have less risk for obesity throughout their lifetime and, and, notably, their coat color changes. They look totally different. The interesting thing is that doesnít just stop with this mouse, it also passes on to the next generation. So that mouseís babies are also gonna have a different coat color. So weíre finding that what people eat during pregnancy in this mouse model is extremely important and weíre really interested in how that might affect women with eating disorders because theyíre having different consumption of nutrition and theyíre also getting less folic acid during this time. So there is an epigenetic mechanism that overlays the genetic mechanism and thatís modifiable based on nutrition.
So how much weight do people with eating disorders gain during pregnancy and lose in the postpartum period? Interestingly, it seems like women with AN are gaining at a faster rate, theyíre gaining more weight than women without eating disorders and theyíre gaining more quickly. Thatís also true for women with BN, BED, and not as true for the EDNOS group. For women with anorexia, faster weight gain might be protective for the developing fetus. For women with bulimia and binge-eating disorder, a faster gain could reflect ongoing disorder behaviors and ongoing psychopathology.
For women in the postpartum period, at six months postpartum, theyíre also, women with eating disorders are losing more quickly than the women without eating disorders. So that postpartum period is critical. And then, women with BED, theyíre not gaining quite as much in that time from six months to thirty-six months.So it seems like theyíre still trying to engage in some weight-loss methods around that time so theyíre not gaining quite as quickly in that later time period.
So that might be that thereís a change in their food choice with young children. Many women describe their food choices changed after they had children. I know I ate a lot more Goldfish than I had ever had after I had kids and there might be this slow, steady increase with age that starts around six months and normalizes.
OK. So what birth outcomes are associated with maternal eating disorders? Interestingly, it seems like smoking, at least in Norway, is a huge problem for moms who have eating disorders. So about thirty-seven percent of the moms who have anorexia nervosa smoke throughout their pregnancy. About fifteen percent of the other groups did. And so experience with nicotine for these babies is also going to have lifelong effects. We were interested in a host of outcomes both primary and secondary and found in general, reassuringly, it seemed like moms, the kids of moms with eating disorders, were doing just as well.
Moms with AN actually had lower percentages of Caesarean delivery but in BN and BED, they were higher. Moms with AN also had more slow, failure to progress during labor and slow progress during labor. So it would be interesting to do a study around the anxieties moms have about labor and delivery. That was also true for the EDNOS group as well.
Interestingly, again, the binge-eating moms had a higher risk of having babies who were large for their gestational age and an increased risk of needing a Caesarean delivery. So Iím gonna skip through this because Iím running out of time.
So do women with eating disorders breastfeed? Yes they do. And look at these percentages, I mean, Norway, 80 percent of moms are breastfeeding by six months postpartum. Itís just not anywhere close to what happens in this country. But in all eating disorder groups, percentages were much lower and it seems like they drop off precipitously around four months postpartum. So theyíre less likely to breastfeed after this period.
And the postpartum period, as we discussed, is stressful. Thereís the stress of caring for a newborn, but also moms are at home alone frequently and theyíre not able to reach their social network. Theyíre frequently taking care of this newborn child and that allows them the, I donít want to say the freedom, but the opportunity to return to some of the eating disorder behaviors that they have used in the past as a coping mechanism to deal with stress. And now they find themselves going back to these older behaviors and to these older ways that they know to cope with their anxiety about caring for a newborn.
Also being postpartum involves a tremendous shape, a change in your shape and muscle loss. And so moms have expectations that are really different than what their body looks like and, you know, those expectations come to us through Us Weekly that shows somebody one week postpartum and theyíve snapped back into shape and so they have these anticipations that their abdomen is going to look exactly the same.
Frequently their anxiety about their supply as well so they worry about whether theyíre capable of supplying nutrition for their children through breastfeeding and sometimes theyíre not consuming enough in order to ensure adequate milk supply.
So, weíre wondering whether that first six months postpartum is a time when theyíre returning to restriction, compensatory measures, other excessive exercise or weight control behaviors that are older ways that theyíve learned to cope with their anxiety or just their fear.
So I want to talk briefly about how prevalent eating disorders are in women presenting for treatment with PPD . This was from our clinic. Thirty-seven percent of those coming into the clinic have had an eating disorder at some point in their lifetime. It was much higher than the general population. About ten percent have had AN, ten percent BN, about seven percent BED and about ten percent have had purging disorder at some point in their life. And compare that to about eight, ten percent is a high estimate for all eating disorders, so eight to ten percent in the population will have an eating disorder at some point. (46:46-47:58) Having an eating disorder puts you at an increased risk for developing postpartum depression later and in studies that have looked at it the other way, so theyíve asked women with eating disorders what percentage of them had postpartum depression, about fifty percent report that they struggled with postpartum depression.
So thereís tremendous co-morbidity and women with eating disorders arenít always educated during their pregnancies that they have this increased risk. And primarily theyíre not educated because they are not willing to share their eating disorder history with their OBs. They are not willing to talk about it and the OBs are not asking.
Ninety percent believe that it has a big effect on the momís pregnancy and the childís outcome yet only forty percent think itís within their scope of practice to ask. So we have to do a better job of training OBs to screen for eating disorders and we have to do a better job of giving them tools for what to do once they hear yes I have had an eating disorder in the past. So thatís one of the clinical implications.
So pregnancy could be viewed as a transformational moment and as a window for recovery. Weíre finding that social support especially from a supportive partner, a friend, can be critical to prevent the re-emergence of symptoms. And I just want to acknowledge all of our funders, this research would not be possible without the National Institutes of Mental Health, which supports a number of our grants. And Iím personally on a training grant which allows me to come and give talks to you guys and give talks to other places and also publish more about this relationship between postpartum depression and eating disorders as well, so.
Sorry for going a little bit over. Any questions?
I know you guys are getting hungry. This is the irony of being an eating disorders researcher, Iím keeping you from food.
Audience member: Hi. I have a question over here. I was just a little unclear about some of the screening, ways that you could identify some of these disorders. Could you please clarify that for me? Thank you.
Stephanie Zerwas: Sure, the screening instrument I would recommend is called the SCOFF. Itís very short, I believe four questions, and it asks about womenís, whether theyíve ever been at a low weight and I believe other people have been concerned, whether theyíve ever felt like eating and their weight and size was the most important thing in how they evaluated themselves. Itís a really short little questionnaire and yet it has really good sensitivity and specificity and can pick up the vast majority people whoíve had a history.
After that doing a more in-depth interview would be recommended but the first thing I would recommend would be the SCOFF. S-C-O-F-F.
Audience member: If thereís a genetic history of somebody with obesity and then thereís a child that develops anorexia in response, perhaps, to some of that genetics, is that common? Do you see that?
Stephanie Zerwas: Yeah and one of the things that weíll see is that the person, the genetic history of obesity, there might have been an underlying binge eating episodes along with that and so these disorders donít just narrow and travel in these narrow categories, they cross over. And they cross over within person but they also cross over from generation to generation. So that heritability of binge eating disorder can put somebody at more risk of also developing anorexia nervosa later.
Audience member: Ö between the eating disorders and diagnosis of failture to thrive with the infants?
Stephanie Zerwas: Thatís a really good question and I donít have data on that. Iíd be curious to find out. I donít think there has been a definitive study on the relationship between eating disorder and failure to thrive but I think itís an interesting question.
Stephanie Zerwas: Everybodyís getting hungry now? OK, all right. Thanks so much.
Susan Ellis Murphy: First of all, Iíd like to point out to you that thereís a handout on your chair and that handout is for, not this next speaker, but Margaret Altemus who will be our last speaker. So youíll find that handout on your chair.
Hope everybody enjoyed their lunch. I certainly did, I have my dessert sitting there waiting for me. So letís get started.
Our next speaker is Margaret M. Howard. Margaret Howard is the director of the Postpartum Depression Day Hospital at Women & Infants in Providence, Rhode Island. She obtained a bachelorís degree in psychology at Western Washington University and holds both a masterís degree and a Ph.D. in clinical psychology from Southern Illinois University.
Dr. Howard is a clinical associate professor in the Department of Psychiatry and Human Behavior at Alpert Medical School of Brown University and for the past 13 years her clinical and research focus has been in the area of perinatal psychiatric disorders. She is a published author and lectures internationally on the topic. Dr. Howard is the director of the only existing mother-baby, psychiatric partial-hospitalization program devoted exclusively to women experiencing perinatal psychiatric disorders.
Please join me in welcoming Dr. Margaret Howard.
Margaret Howard: Thank you Susan. Itís always great to be in New Jersey to talk about perinatal psychiatric disorders or perinatal anything because really this state is the hands-down leader in recognition, screening, legislative initiatives so I think the women in New Jersey are very lucky.
We would all agree we still have a long way to go especially in terms of when we find these women, what do we do with them? Whatís next? The treatmentís always the big bugaboo but I think itís a great start.
So Iím here, I was asked to come today not to talk about the day hospital program which is something that people tend to be really interested in, but Iíve talked about it before. Iím happy to answer questions and some snippets will be woven in throughout about our day hospital, which we just celebrated our eleven-year anniversary so weíre really proud of that and plan to expand and double our census and increase staff and all those good things next year.
But today I was asked to talk about perinatal domestic violence and thereís not been a whole lot of work done in this area but I think itís really, really important. So what Iím going to do is start by giving an overview of Intimate Partner Violence, which I just called it domestic violence but the newer term is Intimate Partner Violence. So Iím gonna give somewhat of an overview because I think itís important to have that, weave it into perinatal status and then talk about some screening issues and resources.
I have nothing to disclose but I think itís always good to bear in mind the World Health Organization definition which I think is a very good definition because itís all-inclusive and includes any behavior within an intimate relationship that causes physical, psychological or sexual harm to those in the relationship. It includes acts of physical aggression Ė slapping, hitting, kicking or beating, I would throw choking in there as well; psychological abuse Ė intimidation, constant belittling or humiliation; forced sexual intercourse; or any other controlling behavior like isolating people from family and friends, monitoring their movements and restricting access to information or to assistance. And I think particularly that the psychological abuse as well as controlling behavior is something that we need to pay particular attention to in our perinatal population.
This is one of my favorite but also least favorite is that the place where a woman ought to feel the most safe is in fact the most dangerous. And what we know from studies as well as just clinically and anecdotally is that thereís a greater risk of a woman experiencing violence within the context of an intimate relationship than in any other aspect of her life. And I think, all of us can recall even as little girls growing up, you know, watch out for the boogeyman, it was always this boogeyman, this like dark stranger lurking in the bushes that could be the perpetrator of violence when, in fact, you know, we know all too well that really itís not the stranger that we need to be concerned about but people who we are involved with and intimately involved with.
So the other thing to keep in mind is that those women who do experience intimate partner violence are three to five times more likely to experience depression than women who do not experience IPV and that is in the general population.
So we know that it is very prevalent among women in the general population. However, that prevalence increases in clinical settings. The lifetime prevalence is roughly, from current data, is twenty-five percent of American women will be physically or sexually assaulted by an intimate partner. The international data is so all over the place. It goes from six percent all the way up to seventy percent with some studies so the methodology, the sampling is so variable that I decided to just talk about the American prevalence data, which those studies tend to be a little bit tighter and more consistent.
However, in clinical practice settings, in a primary care setting, twenty-six percent of women patients will have been victims either in the past or currently of intimate partner violence. Thirty-five percent of patients who are seen in the OB setting and in the emergency department, forty-one percent of women who present for violence-related sequele have been injured by a current intimate partner.
We also know that there is, while itís devastating in and of itself, we know that there are some important health impacts that can be further devastating and exposure to intimate partner violencehas been associated with increases in central nervous system complaints and problems, gastrointestinal disorder, GYN disorder, musculoskeletal complaints, cardiac complaints and also the biggies, which is depression, anxiety, PTSD, substance abuse and suicidality.
There is a dose response relationship meaning that as the intensity, the frequency, intensity and duration of the intimate partner violence increases so does the fallout in terms of either psychological symptoms or physical symptoms. And these complaints will increase over time which is interesting for those of us who work in office settings. And when Iíve talked with primary care providers about this and I say to them, pay attention to women who just keep coming in and coming in and coming in. in fact, Iíll mention it in a later slide again but Iíll mention it here that there was this nice, little study done that showed eighty percent of women who are going to their providers want to be asked. And I found that really interesting, this was a primary care setting, interesting in light of how much shame is attached to this. So there does seem to be some suggestion that as much as women are reluctant to disclose intimate partner violence, in the office setting, in this sample it was a medical setting, they do want to be asked.
So we also know they have an increase in the utilization of medical services.
So we also know itís most common in women of childbearing age so, given that, we need to pay attention to our patients who are having babies. And Ė this is my teenager helping me with my slides and doing funny things Ė so many of you have probably seen this slide but it bears going over again which is that cycle of violence. Thereís a tension buildup and then there is an explosion and then there is the honeymoon. And this is a lot of why women stay in these relationships. Itís all too easy for us to say, wait a minute, why doesnít she just leave? Well, Iíll get to that in a minute. Thereís lots and lots of reasons why women donít just leave. But there is this pattern of the building tension, the explosion, you know, which can be verbal abuse, throwing things, breaking things, actual physical abuse and then the apologies, the promises, it will never happen again, I love you, Iíll do anything. And sometimes in this honeymoon stage counseling is entered into. And so you can see, this is very compelling. You have a family, you want it to remain intact so, you know, youíre gonna listen to those words and you want to believe them. But studies have shown there does tend to be a cycle.
As I said, thereís a lot of pressure for women to stay in this relationship. So the, why donít you just leave? Isnít so easy, particularly with our population of women who are either pregnant or they have just had a baby or theyíve had a baby and they have other small children at home, not so easy to leave. Society expects families to remain intact. The offender tactics, which I just mentioned Ė the promises, Iíll do anything, also some of the, you know, personal tactics, which are, you made me do this, itís all your fault. And sometimes a woman can believe that and she feels victimized and yet she feels culpable at the same time. And thatís just another tactic, like if you hadnít done A, B or C, I wouldnít have exploded. So sometimes women get into this pattern of magical thinking, of, oh well, if only I had prepared a different dinner or if only I had kept thekids quiet while he was sleeping so there is this illusion that I think women develop that somehow they can control the offenderís behavior if they change their behavior somehow. But illusion is in fact the operative word.
So we have to understand the dynamics in order for us to properly screen and the most important thing that we as providers can do is put aside our judgements and put aside our stereotypes and put aside our preconceived notions. We all know that intimate partner violence does not just happen to poor, undereducated women who are living in the bad part of the town where thereís a lot of drinking going on and that sort of thing. We know thatís not true. It cuts across all class levels.You know, every year thereís stories in every community paper, at least this happens in Rhode Island or Massachusetts, thereís some councilman or political figure who was arrested for domestic assault so we know that it cuts across all.
Itís also not just a social service issue but an issue that everybody needs to be aware of and involved in. Victims of intimate partner violence donít choose to be abused or to stay in an abusive relationship because they want to. I mean, itís complicated so it needs to be sorted out and women need to be treated and approached as individuals. Every woman has an individual story. We have to set aside our generalizations and assumptions. So, you know, our role can really be to break the cycle if we do a proper inquiry and support and ultimately help.
But there are a few risk factors that we know of. We know poverty is a risk factor; low level of education; alcohol or drug involvement on either side, the perpetrator of the victim, and we all, you know, it was mentioned earlier about self-medicating with substances, this certainly seems to be the case for some women who are abusing substances within the context of a intimate partner violent relationship; being single; being adolescence; in conflict with either current or past intimate partners. So that we have all seen in our practices women who tend to repeat. They meet a new, they leave the abusive relationship, they meet a new man and they say this guy is really different. And I donít think we understand that dynamic well enough, we donít have really good interventions but weíve all observed that in our practices, this, oh, she keeps repeating this, she keeps choosing these guys that arenít good for her.
The three really big mental health correlates are depression; anxiety disorders, particularly post-traumatic stress disorder; substance abuse; and also sense of guilt, shame, low self-esteem and suicidality. The suicidality really comes about from women who just think thereís no way out. You know, thereís no way out and they feel really, really trapped. It is a desperate, desperate situation made even more desperate when a baby is involved or children are involved, although we all have, we certainly have seen this in the day hospital, women who come in and have been in an abusive relationship for a long, long time and itís only after they have the baby and there are promises on the offenderís part to change but then when thereís an incident after the baby is born or when the baby is present that sometimes is the impetus for the woman to leave the relationship.
What we know is that when the violence stops or when she leaves the relationship that depressive symptoms tend to decrease over time, as time goes on. But the PTSD symptoms persist, one study showed, for an average of nine years. So thatís important to bear in mind. And just to review, because I think itís worth reviewing, the symptoms of PTSD which include hypervigilance, that scanning of the environment. This is the woman who, you know, may be sitting, I tell physicians, you know, she could be the woman sitting in the exam room and you open the door, even if you knock, and she startles, you know thatís the exaggerated startle response. They will be shut down, theyíll have intrusive recollections, flashbacks, nightmares, sleep disturbance, the exaggerated startle, you know anger is a big one and a difficulty concentrating because, you know, theyíre depressed, theyíre anxious, both of which impair concentration. But with this group theyíre also enormously preoccupied. Whenís it gonna happen again? What should I do? How can I keep myself safe? How can I keep my kid safe? You know, these women think about it a lot.
So there are cumulative effects. Over time, as the violence goes on, the depression increases. Thereís an increase in the intrusive symptoms of PTSD as well as that shutdown, avoidance, the numbing. This is when sometimes youíll see a lot of the substance abuse. Thereís high co-morbidity, which means you have both major depression and PTSD going on so you have two, both conditions are happening with these women. And as I said before, the depression kind of eases up but the PTSD does not once it starts.
Additional red flags include, as I mentioned before, that real, that sense of guilt, that sense of shame, the low, low self-esteem. We see this all the time and itís almost universal in the women who are current or recent victims of IPV. And so we tell, you know, itís hard, this is a tough one to screen for. I think that weíve come a long way with women once we get them in our clinical space, in our office, to get them to talk about their depression, their symptoms of depression. Itís much harder to get them to talk about the existence of a violent relationship with their partner.
So thatís why itís important to pay attention to their body language when you are screening, and Iíll get to some screening questions a little later, you know, when you start to actually ask them about the presence of violence, you know, and Iím saying violence globally which also includes psychological violence. And, you know, weíll use terms like controlling behavior but when youíre starting to talk to them about that, do they start to fidget or do they get very still? Do they stop their, lose their eye contact with you? Does their breathing get shallower? Do they stop breathing? You really have to watch, you know, the women that you are sitting with and they are, you know, intimate partner violence, depression, perinatal status, itís all intimately related to one, itís a unique relationship, we still donít know a whole lot about it but there are more studies.
Now the other thing is, you know, itís the chicken and egg. Itís a cycle. What comes first and how are they related? Because we know that women who have depression and anxiety disorder do suffer some impairment in caring for themselves. They could suffer impairment in caring for their children which could be a setup for more violence so you can see the cycle that can really develop and why we canít treat one thing alone, we have to be, itís kind of a moving target when you have a woman who maybe I is in postpartum status and has a newborn, may be suffering from a postpartum depression or postpartum OCD and on top of that, sheís in an intimately abusive relationship and on top of that, it just goes on and on so everything needs to be attended to.
And, as I said before, sequele are devastating, being abused is a devastating experience but for the perinatal woman there is also some additional health risk both to her as well as the fetus. We know that intimate partner violence once it starts tends to continue even if a woman does become pregnant. And, when it happens during pregnancy, pregnancy can be a marker, the studies have shown, for fatality. Women have, thereís three times the risk of death in abused women versus women not abused during pregnancy. And it is the leading cause of maternal mortality.
And so, you know, women who are murdered in this country, the majority of them are killed by current partners. And again, itís the leading cause of maternal mortality among pregnant women, pregnant or newly postpartu, women.
The American College of Obstetrics and Gynecology estimates that intimate partner violence is at least as common as either gestational diabetes or pre-eclampsia and the consequences are grave for both maternal and fetal health. So even ACOG is starting to pay attention to this. you know, it took us a long time for them, for the American College of Obstetricians and Gynecologists to pay attention to postpartum depression, still have a ways to go, but weíre making some headway especially with the current president who really supports screening, but we have a long, long way to go in terms of screening for intimate partner violence.
During pregnancy, itís associated with low birth weight. In terms of the newborns, inadequate weight gain, there can be spontaneous abortion, pre-term delivery, pre-term membrane rupture, urinary tract infections and exacerbation of medical conditions and morbidity associated with injuries due to restricted access to care, delayed prenatal care, missed appointments and obviously depression and PTSD.
We have a very large perinatal clinic, obstetric clinic, where women go for their prenatal care and I tell, you know the practitioners there get frustrated because these women donít show up for, it serves largely the Medicaid population and so their phone numbers change and they miss appointments and, you know, the practitioners are pulling out their hair, but those of us who are involved in the IPV world and sit on the task force, tell them youíve got to let go of that sense of frustration because we know that thereís a likelihood that women who are being, well, no, the studies actually show women have lots of missed appointments who are in violent relationships and sometimes theyíre access is restricted, sometimes theyíre afraid to leave the house, there can be a host of reasons that play out by missed appointments.
So itís not that sheís just being irresponsible. So hereís where, we know that women with IPV are more likely to have substance abuse issues and we also know that women who are, theyíre also more likely to be depressed and we know that women who are depressed are also more likely to use nicotine, to use alcohol, to have poor nutrition, poor health habits. You heard Katherine talk about driving through the stop signs, thatís not uncommon. And thatís not like anybody gets in the car and says, I think I wonít put on my seatbelt or I think Iíll run a red light. Again, their brains are mush, theyíre preoccupied. Theyíre having trouble concentrating, so they really are at high risk. They also have a lot more stress and we know about the deleterious effects of stress. Theyíre more likely to have suicidal thoughts and could be engaging in self-injurious behavior.
Itís also not a new thing. Conventional wisdom waxes and wanes. One point is like, as soon as a woman gets pregnant her abuser is not going to abuse her anymore because sheís pregnant. Then thereís the wisdom that says, oh no, once she gets pregnant, the rates go up. What we know is the majority of women who experience intimate partner violence prior to pregnancy, they continue to experience it. Although twenty-seven percent in this sample, this was a PRAMS sample, and itís interesting because Katherine was talking about PRAMS of women not really disclosing, at least in the state of Rhode Island, this was across 16 states, they were finding they felt like it was greater disclosure because it was anonymous and because there were so many questions so that women, because they were assured of the anonymity, they were more likely to disclose so thatís an interesting question.
So we also have found that that notion of, oh well, they stop getting abused while theyíre pregnant, well sometimes the physical abuse lessens. More and more the studies are indicating that it seems like there is a trend for the physical abuse to decrease, however, the verbal, the emotional abuse and the controlling behavior stays the same and oftentimes increases. And you can kind of see how there would be an increase especially in the context of a relationship where there had been physical abuse prior.
So there was a big, big cross-sectional study done in Canada showing there was a really strong association between postpartum depression and intimate partner violence and another study showed that it was the real recent intimate partner violence was a significant predictor of PPD. This was factoring out all other variables that sometimes account for depression. IPV alone was a really strong predictor for PPD.
I thought this was interesting, that women who reported, in this one study, frequent psychological IPV were more likely to screen positive for postpartum depression than women who reported physical or sexual violence alone. I kind of read that and reread that and, you know, you guys might want to Ö so I thought, what is up with that? The idea that physical and sexual violence can occur, and it obviously does, in a context where there isnít much psychological abuse. And those women tend to have lower rates of postpartum depression than the ones with the psychological abuse. I guess one could explain it that this was, itís these snippets of violence that seem anomalous. Thereís not part of the buildup, the name calling, the putdowns, the belittling and the psychological control so when it occurs outside all of that, without that backdrop, you know, the outcome is maybe a little bit different because the womanís partner treats her OK in between those times and then thereís just this real explosion. They donít have that tension buildup phase so I think itís very interesting.
So ACOG is on the ball in terms of screening, in terms of their recommendation. They recommend, you know they write these recommendation papers every few years and so the American Medical Association is recommending it; the American College of Physicians, which is all the internal medicine folks; ACOG; the American Association of Family Practice recommends it; the American College of Emergency Physicians recommends it; AAP is the pediatric and adolescent college, they recommend it.
Interestingly, neither the APA or ASW recommend it in their routine, in their position papers, which I find interesting, and I think itís probably because thereís just an assumption that as mental health care providers, weíre just already doing it. But now we know that the Joint Commision, formerly known as J-co, the Joint Commission, which is the body that accredits hospitals and all healthcare organizations, they now require that every hospital have an IPV screening protocol and Iíll tell you in a minute what ours is. The recommendation that, obviously, screening be done in a safe, private setting. You have to ask directly, you cannot beat around the bush, you have to ask these questions directly. Itís gotta be brief, itís gotte be behaviorally specific inquiry and you have to clarify who the abuser is. This is one that some women may balk at, if she balks, thatís fine. But the more specific you can get, the better.
The reason that, you know, whoís doing the is important, is this a current boyfriend, an ex-boyfriend, a current husband, an ex-husband? Is there a restraining order? How well does that community, that municipality actually enforce the no-contact order? With some, itís a joke. Some women say I donít even bother getting a no-contact order, itís never enforced.
We also have to consider cultural difference - whatís the womanís primary language? Again, it all goes back to treating this woman as an individual and trying to avoid generalizations about the context of her intimate partner violence experience.
The most important thing is you want to validate her experience. You do that, as a provider, with your body language, your being calm. You know, as was mentioned before, being calm, this is all in the course of a day, this is what you want to convey. Youíre not shocked, youíre not horrified, youíre not blaming her. This was, you know, really important information. It took a lot of courage on your part to tell me this. That took a lot of courage and thatís a big accomplishment. So that sort of thing is very important.
And what one of my colleagues, Amy Gottlieb, whoís a primary care doctor, I like the way she opens it with her patients, she says, because violence against women is so common in our society, I ask all my women patients about violence in their lives. Thatís a great opener instead of just like going in there with the questions because they can be sort of off-putting and frightening to women. So you want to build up and, you know, this is how she does her opening, all of you need to find your own way. But I think itís important to have an opening. Itís sort of like, I train all the Brown University pediatric residents come through and I do a little tutorial with them on postpartum depression and screening the moms of their patients and so I tell them, even though theyíre, you know some of them are just about to graduate from their residency, some of them are just starting, but I tell them all the same thing, I say, pretend that youíve been in practice for years and years and years and this is all in the course of a day, and you start it with, Iíve seen so many moms that come in with their new babies and tell me how they just donít feel themselves, is that the same for you?
So the whole idea is just to normalize it, to say, you know, like in this clinical space, in this office, Iím used to hearing about this a lot. Iím not afraid to hear about it and Iím not afraid to talk about it with you so we can be open here. And I just think thatís a really important message.
These are the three specific questions that the Women & Infants Task Force decided upon, which covers threatening, hurting behavior, kicking, choking, the physical and also is someone forcing you to do something sexually that you do not want to do. So we kind of cover all of it. I embellish more with the emotional and verbal abuse part. They donít have a very specific question. I guess the first one kind of falls into that category. I tend to, because Iím a psychologist, you know, I tend to talk and embellish it and try and probe around a little bit more. And I also, you know, I will talk about things like throwing and breaking things. With my population, as was mentioned before, you know, how we all know that postpartum depression and, to some degree, perinatal, antenatal depression, although I see it more often postpartum, is this high, high, high degree of irritability within the context of a depressed mood and the anger. And I always ask women if they get so upset that they throw things and break things and they go, yes, how did you know? So I kind of and again this is all in the course of a day but I do the same thing when asking about intimate partner violence, you know, does your partner, does your household ever get so stressed that things are being thrown? And then if she says, oh yes, then you get into whoís doing the throwing and whatís being thrown and really how close do they come, you know, throwing knives is a lot different than throwing the throw pillow. Thereís a reason why theyíre called throw pillows.
So a lot of women, and I think these, here we come with this physical abuse thing, they, if itís a one-time, well, Iím getting off the track because Iím seeing one time so Iím thinking about the one-time encounter that women tend not to disclose because itís so shocking that they think itís anomalous. But also the one-time clinical encounter, women tend not to disclose so it happens more often in the context of an ongoing relationship, you know an ongoing provider-patient relationship but sometimes we donít have the luxury of that.
And certainly for us, and I think in many settings, with this requirement in healthcare organizations, with this requirement that we screen everyone, thatís our only shot of seeing them. So itís not like the old days where you could kind of build up, establish a therapeutic rapport, get a relationship with the patient and then go after it, we have to do it right away.
And we are repetitive in our screening so that helps. So again, the questions that we developed were based on the abuse assessment screen, which is really a nice screen. Itís very comprehensive, I included the reference in there. And we just shortened it for our purposes.
Always have to ask, are there weapons in the home? Does the abuser have access to weapons? Thatís a big one, financial, physical resources to escape. Can they access emergency services? If, hereís the former partner thing, there may be a no-contact order, they may not be living in the home but they may have a key or they may have access to breaking in and do they feel safe to go home? You need to ask those questions right then and there when a woman discloses to her. Then you have to validate her experience, you engage her in the safety plan. Iím really glad you told us or told me, Iíd like to be able to help you. I want you to know that this isnít your fault, OK? And you are not alone, not unlike what we say to our women with postpartum depression. Youíre not alone, you didnít cause this, youíre not a bad mother, you know, that goes, that sentiment goes a long way, one, because itís accurate and two, because itís not what a woman is believing at the time and sometimes we as the professionals can instill her with a little bit better sense when we tell her that itís not.
So, hereís the questions and I think there in here too and I think these are really good responses. We want to help them with informed decision-making. Iím not trying to frighten you, but you should know that domestic violence Ė you can call it that, more people know it as that rather than intimate partner violence Ė often becomes more frequent and severe over time. And depending on what sheís disclosed, you can say, that seems to be happening. It can impact your health, it can impact your childrenís health. You know, you donít want to scare them but you can say, look, Iím here to help you and as your provider, as your clinician, as your physician, my job is to take care of you so I canít not talk to you about this.
So you want to talk with them about emergency services and you also can say you donít have to file a police report. Thatís what a lot of women are afraid of, you know, I donít want to go to the police. And sometimes that fear is warranted but we want to tell them that we want to provide continuous care. These are the women you want to have come back into your office sooner rather than later. Follow-up is important. This is sometimes really frustrating for those who are in practices who donít have a lot of time to spend with patients but this is time well spent and if, letís say you only have thirty minutes, you have her come back shortly thereafter, you have her come back the next week and you, even if you can do a phone check-in too. But you have to be careful about that, calling the home, is there a number that I can call you to check in that is safe? Because you donít want perpetrators answering the phone necessarily.
So one of the questions that we had in our sample of women who were admitted to our perinatal day hospital was, were the women with IPV any different than the women who werenít experiencing IPV? We looked at charts of two hundred and twenty-nine women, twenty-six percent were pregnant, seventy-four percent were postpartum and the way we screened, before theyíre admitted to our day hospital Ė not everyone that we evaluate meets the level of care need for partial hospital level of care. Many of them we refer right to outpatient, but so we do this whole evaluation, they complete lots of self-report and then we ask them the questions, those three questions directly.
So this is partial hospital level of care for those of you who arenít familiar with it. Basically partial level of care is Monday through Friday from about nine in the morning until two thirty in the afternoon, thatís our program. Sometimes some women come a little bit earlier, eight thirty. The average length of stay is about two weeks, itís a step down from inpatient. These women are fairly impaired, you know, and just not functioning day to day so they need to come in, but we think they are well enough and when I say well enough, that means theyíre not actively suicidal or homicidal or actively delusional so they can actively participate in their treatment. Those women need to go inpatient.
Women who come in and say, theyíre like, maybe theyíre still, theyíre pregnant but theyíre still going to work every day, theyíre getting by, those, you know, but theyírestruggling but still kind of getting by in day to day, those are women that we tend to refer to outpatient.
So itís this middle ground that we treat and eighteen percent of our sample did report current IPV and the most common form, similar to other studies, was this verbal or psychological abuse. And hereís how they were different from our non-IPV women. And again, these are all women who meet criteria for partial hospital level of care. But the women who were in current violent relationships had prior psychiatric diagnoses, they had prior suicide attempts, prior self-injurious behaviors and they had unplanned or AMA discharges. So these are women who left our program prematurely.
So based on this, weíre watching the clock here, our recommendations were that perinatal women who meet criteria for intensive treatment level of care and who have prior psychiatric histories, suicide histories and history of self-injurious behavior should be very carefully and in most cases repeatedly screened for the presence of IPV. So it was good for us to learn that these are the red flags in our population, you know, this history of self-injury, prior psychiatric treatment and psychiatric diagnosis and prior suicidality. Really important at the time of intake to have lots of contact info. If she just gives you a cell phone number, you say is there someone else that I can contact who you feel comfortable giving me their number in case we canít reach you? Thatís very important in light of this unplanned flight from treatment.
All healthcare providers should routinely screen for IPV. Obstetrical providers are uniquely positioned to screen given the frequency of contact with women in high-risk age group. When I say obstetrical, that includes those of us who treat women who are also in obstetric care. Adolescents, minority women, women with prior histories and IPV and women with disabilities, these, I didnít go into it in prior slides, but these are also been determined to be high-risk groups, should be recognized as being particularly high risk and may warrant more frequent screening. Frequent missed appointments may be a red flag. Screening should occur repeatedly, at the first prenatal visit, during each trimester and postpartum visit.
In our mental health clinic practices, I think we need to screen, you know, we do the first screening, itís fine, you know, you donít ask at every outpatient session, but you know, youíre skilled so if you pick up kind of red flags, thatís when itís worth going into again. Itís gotta be private, itís gotta be direct and you have to pay attention to both what they are saying and what theyíre not saying and what their body is doing.
And we, they need to have, you canít ask without having resources so all of you here are probably quite familiar with the resoucres but I thought, since I was coming to the state of New Jersey, these websites are very, very good, the Safe Horizon domestic violence hotline, are any of you familiar with that? And also, so they have the state domestic violence hotline and also the Safe Horizon and both of these websites are very good with providing lots of information for, you know, as a practitioner itís really worth having this. Most of these organizations also have pamphlets so, if nothing else, itís sort of like what we tell the OBs and pediatricians about postpartum depression or perinatal, just hand the woman a pamphlet, you know, just provide the information.
But I think with IPV itís also important to, if youíre handing her the information you need to have a conversation about it and, you know, make sure she is safe. Thereís also national resources, and the national domestic violence toll-free hotline, which can, itís sort of like PSI in that itís national but they can put you in touch with your local resources.
And thatís it. Happy to answer any questions if you have them.
Can everybody hear the question? Do you want to ask it again? Or do you want me to rephrase it?
The question is, if in your screening, you find out there are weapons in the home, as a practitioner do you have the authority, either the authority or the mandate to get the authorities involved?
You know, we are mandated, all of us are mandated, federally mandated to break our confidentiality if we have very strong reason to believe that someoneís in danger, serious danger. So, if there are weapons in the home and are you saying sheís in an abusive relationship?
Maybe, maybe not. I mean, all of us evaluate people and we ask questions, are there weapons at home and she says, yes and then you want her to explain. And half the time, itís well my partner is a hunter or my partnerís in law enforcement and then you ask them about whether the guns are locked up, etc. etc.
You know, every case is different. I had a case a couple of years ago of a woman who came in, she was quite depressed, there was a weapon in the home. And she was also suicidal. In her case, it was suicidal and so she actually gave, we gave her our dog and pony show and she said she wasnít gonna do anything but Iím sorry, there were too many red flags for me, she gave us permission, although I persuaded her very, not so gently, but she ultimately, she wound up doing great, but she gave us permission to call her husband who was working out of state but to come home and take the weapon.
So we engaged him in the treatment and got the weapon out of the house.
I canít remember why, it was her gun for some reason. But you, we just kind of kept probing until we got someplace with, how can we get this gun out of the house? I just wanted her and the gun separated, I didnít feel comfortable enough.
But, of course, if thereís a gun in the home and you really, truly have a lot of clinical evidence that this woman is at risk and she is refusing to cooperate, at that point, by law, we would need to get the authorities involved if we thought she was gonna kill herself, kill someone or be killed.
Audience member: Ö and I called the state hotline giving no demographic information and asked if this was a mandatory reporting situation and every time they said yes. And they actually, in my experience, responded much faster to domestic violence situations than in times when I was reporting suspected sexual abuse of the child. I mean they were there within the same day, within a couple hours.
Margaret Howard: Is that in New Jersey?
Audience member: Yes.
Margaret Howard: Thatís really great because thatís not always the case in some states. So you reported to the state DCYF?
Audience member: Yeah, itís DYFS in New Jersey but thereís a hotline that you call.
Margaret Howard: Thatís great, thatís great because I think you need to, itís important to ask but you always have to ask whether or not children are present. And I think that can, at least it sounds like in the state of New Jersey that can be your hook.
Audience member: When you read about domestic violence, you always seem to find out that the perpetrator is like all the time present when this checkup happens. Have you encountered any difficulties handling the partners? Ö You will interview the lady but then the husband is just around her, how do you handle that?
Margaret Howard: You know what, I didnít catch all of that. Iím sorry.
Audience member: When you try to interview the domestic violence, the partner usually is present so how do you handle these husbands to leave the scene until you interview them, the screening?
Margaret Howard: Oh, the partner is present? Really, really good point. Thatís a tricky one and thatís an excellent point. What do you do when the partner is present? We donít ask when the partner is present. You canít ask that question when the partner is in the room.
The way that we do it is if a woman comes to the initial evaluation with a partner, which is not uncommon, I usually say to the partner, I am so glad you came, this is great because you probably know, I use her name, better than anybody so your input is really gonna be important, but I like to start with her so Iím gonna start with her, then Iíll come out in a little bit and ask you to join us. So thatís how I do it and it puts them at ease, like oh, Iím happy to see you and when I bring them in, I start by saying, what changes have you noticed in your wife or your girlfriend or something but if thereís a, so I never, we never screen with a partner present. Thatís pretty standard.
If the, Iíve had some partners have a very hard time with not coming in the room. I hear this a lot more from obstetricians and nurse-midwives. They have a much hard time with this, you know, the partners always want to be in the room so they struggle with this a lot more. But you just have to be firm and say things like, itís my policy or the clinic policy. Sometimes say policy is to do this evaluation alone and then bring you in halfway through or towards the end or something.
But if thereís a partner who absolutely insists and it looks like thereís gonna be some trouble, I would, you know, you have to finesse that a little more until sometimes you have no, Iíve heard some people talk about not having a choice and the partner comes in but that is a giant red flag, a giant red flag that you just want to follow up with.
Audience member: I have a question. When you pay attention to what you hear in the news, it appears these women appear to be most at risk after they leave these partners, thatís when theyíre getting killed so you have to be really careful.
Margaret Howard: Yes, that is, thatís true. You have to be very, very, very careful. Thatís why again the person who knows best is the woman. She knows this man, she knows the pattern. And weíve certainly had women in our day hospital who have said, I would be at higher risk if I left him right now. So you just have to work the best you can with what youíve got and give her as many resources as you can and empower her with information, the hotlines and the shelters and ask her how we can help.
Audience member: You just answered my question kind of. Iím a community health nurse and we do screening for intimate partner violence and one of the challenges that Iíve seen is when the women divulge the information that theyíre going through domestic violence, you make the referrals, you set up the safety plan but then they go through the honeymoon period and they decide to stay. But theyíre the expert in their own lives, so how do you support that women whoís with the abuser and sheís not following through with the referrals that youíre making? Whatís the best way to support her if she decides to stay with him.
Margaret Howard: Well because sheís in the honeymoon phase, I think the best way that you support her is you educate her. I think thatís the best that we can do is to say, you know, thatís great, you want to support it, like does the honeymoon phase include counseling? Well, you really want to support that because that can be effective. If it does not include counseling and itís just promises of it never happening again, we have data to show that itís probably not going to last very long so you arm her with information, you show her, you know you can get, make or get handouts of that cycle and you give it to her. Weíve done that with patients who weíve had that exact same scenario and we explain to her and we have her take that and she just kind of has a visual then and tell her that it could very well happen again.
And if it does, weíre here to help you and there are resources. But as many of you who have worked with these women know, it sometimes takes repeated cycles before, you know, itís denialís a powerful thing and also, these are, there are reasons itís called intimate partner violence, these are intimate partners, I mean these are partners that the woman feels very attached to and you know you have to believe that at one time, that there are also some really positive aspects. Itís not always black and white and thatís what we canít lose sight of.
Any other questions? Well thank you very much.
Mariann Moore: OK, now Iíd like to introduce our last speaker, Margaret Altemus. Dr. Altemus is the director of the Payne Whitney Womenís Program, which provides evaluations and treatment for women with reproductive-related psychiatric conditions.She is associate professor of psychiatry at the Weill Cornell Medical College and associate professor of psychiatry in complementary and integrative medicine at Cornell. Educated at Georgetown School of Medicine, Dr. Altemus brings us significant experience with PMD and has achieved national acclaim.
Dr. Altemus completed her psychiatry residency at Yale University in 1987 and came to work at Cornell in 1996.
Please join me in welcoming Dr. Altemus.
Margaret Altemus: Great, so Iím really happy to be at this conference today and itís been good for me to learn about how womenís mental health referrals are handled in New Jersey. I think itís really a model for the country and really a great thing.
And Iím going to be talking about medication but I think this information is so important to you in the audience because, as we were talking at lunch, mental health care is sort of shifting so psychiatrists tend to just see people for medication and then people get their therapy with other practitioners and the people that need to help support women in taking medication if they need it or going for a medication consultation are gonna be the therapists and community mental health workers that see them in the field. So I think this is, we really need to partner together to try to do this work.
So Iím gonna, in this talk Iím gonna tell you a little bit about the approach to medication treatment during pregnancy and lactation. Iím gonna go over some specific medications and then go over some alternative treatments that are available and give you then just some specific resources that patients or practitioners can get the most up-to-date information. Because one thing about medications during pregnancy and lactation is we have a lot of gaps in our knowledge and theyíre being slowly filled in and usually online resources are the most up-to-date.
So first of all, why treat someone whoís got depression or another psychiatric illness during pregnancy? And I think there are some symptoms that we know have adverse effects on the babyís development. So insomnia, poor nutrition, non-compliance with prenatal care and one thing I think is really not talked about much but weíve seen, you know, at least three to four times a year on our inpatient unit is a woman who is very depressed comes in and even though she had gone through infertility treatment and this was a very much wanted baby, has a severe depression during pregnancy and wants to terminate the pregnancy. And itís ethically very difficult because the OBs are saying, hurry up, hurry up because we only have a few weeks left when we can still do a termination, but the psychiatrists are thinking, well if she just got better, she would change her mind, so I think thatís a real reason to treat during pregnancy.
The other thing that we know happens in depressed women who are not taking medication is prematurity, babies tend to be born early and thereís a bigger risk of prematurity and also postpartum depression. Iím gonna come back to this again in the talk but we now know with these prospective studies, almost half of postpartum depression starts during pregnancy so you really want to intervene earlier. I mean we do all this screening, people are kind of focusing on postpartum screening but thereís a good argument to be made for screening during pregnancy because if you treat it sooner than you can avoid postpartum depression.
And, also, Iím a little hesitant. Even though there are animal studies that show that if you stress the animal during pregnancy, it has effects on the outcome of the baby, I donít think we can really say at this point that just being depressed during pregnancy or just being anxious during pregnancy has adverse effects on the babyís development. Now if you have some of these features that Iíve mentioned here so that can impact the babyís development, but if a person just has psychiatric symptoms, itís really hard to know when you find adverse outcomes in the children like more ADD or more behavioral problems, if thatís due to the mother being ill during her pregnancy or if itís just due to sort of genetic predispositions to anxiety and things like that. So Iím a little hesitant to say that to people and then weíve mentioned, a couple of the other speakers have mentioned risk factors for depression during pregnancy. And, you know, hyperemesis itself doesnít seem to be related to depression but itís a terrible strain on the mother so that can make a person more prone to depression. And then, prior histories of depression or abuse are certainly risk factors and poor social support and you might think that PMS, like having premenstrual syndrome, is gonna be someone whoís gonna be more prone to postpartum depression but, so far, there have been two studies looking at this and there hasnít been a link. So Iím not really sure that thatís true. One thing that might be true is that when people tend to have PMS, they might get the symptoms when theyíve got high levels of progesterone and estrogen and youíve sort of got the opposite thing in postpartum depression.
And this is a study, we were interest, Iíll get back on this topic of postpartum depression that starts during pregnancy versus postpartum and, to me, as a biological researcher, thatís such a different situation. In pregnancy youíve got these super-high levels of estrogen and progesterone and then postpartum theyíre extra low.
So we started, we took women that we had seen in our clinic, they presented either with, all with major depression, so all these women had major depression but the ones in blue had onset during pregnancy and the ones in pink had onset of their illness postpartum. And what you can see on this left one over here is that people that had a history of major depression, they tended to relapse during pregnancy and relatively few of them relapsed during the postpartum period. And I have to say the people that we see with depression during pregnancy, 75 percent of them had gone off their medication so I donít really know if thatís a depression due to actually being pregnant of if thatís a depression due to going off your medication.
And, whereas postpartum only about a third of people had gone off their medication so this points to me that there is an entity thatís postpartum depression thatís really different than a woman with a history of depression just having a relapse
because she went off her medication.
And over here, as we look at the people that had a history of postpartum depression, suprisingly, most of them had their relapse while they were pregnant so it looks like once youíve got a postpartum depression youíre more prone to have an onset during pregnancy the next time versus postpartum.
And then, just looking at the symptoms, over here on the left people that had obsessions and compulsions, that was much more common in postpartum-onset depression than it was during pregnancy-onset depression and women who had a history of abuse tended to relapse during pregnancy versus postpartum.
So kind of the picture weíre getting, this is from about 250 women that we evaluated that had major depression perinatally, is that if you, somebodyís got a history of abuse, a history of depression, someone in general whoís just got a higher risk of depression, they tend to relapse during the pregnancy whereas what we kind of see as that pure postpartum depression often is someone whoís got no history at all and then, all of a sudden, falls into a major depression postpartum.
So I think that biologically these may be very different things.
Now, in terms of planning the medication treatment during pregnancy and postpartum, the number one thing is itís really so much better if you can plan for it before the woman gets pregnant and, again, as mentioned earlier, up to fifty percent of pregnancies are unintended. So for therapists out there seeing women of reproductive age, I think itís really important if youíre seeing them and theyíre on medication that, the psychiatrist obviously needs to do this, but a lot of people get medication from their OB/GYN or their internist so you really want to talk to them about birth control.
Another thing thatís important is to involve their partner. Partly it should be a shared decision but also, the partner, if theyíre involved in the decision they can support the woman as she goes through this process. Although most psychiatric medications, we doní think there are increased risk of birth defects. Unfortunately for the more ill women, the people with bipolar disorder that have to take mood stabilizers, there is increased risk for birth defects and these are the people who need medication the most. But I think itís important to kind of have someone stop and think through what they would do if they had a baby with a birth defect and that can sort of help people with their planning. And again, as Iíve been surprised with each of these talks, one of the things,everybody has mentioned this, and I think itís particularly important with medication is itís really an opportunity for women to rethink their treatment. And I see a lot of women who have been on the same medication for ten years, twelve years and they just keep taking it and they never really think, can I get along without this? So itís really a chance for them to try to control their, you know, stop taking sleeping pills, and try to control things with psychotherapy and other kinds of self-care approaches.
Or also sometimes people are on combinations of medication and we want to try to encourage them if planning takes place before they get pregnant, they can try to streamline their regimen so theyíre taking less medication.
And again, you want to weigh that thereís gonna be risk to the mother of changes in medication versus risk to the fetus and when youíre doing planning you want to consider how the medications are gonna work during pregnancy and lactation.
One of the things that I think is really important and is a problem with whatís in the media and what you see on the Internet is a lot of the times there will be a threefold increase in risk of a certain complication of a certain birth defect but the actual risk of it happening is very small. And one of the things you have to keep in mind is thereís already a three percent risk of birth defects if people arenít taking any medication and thereís also, you can double that risk with obesity, thereís a lot of health behaviors that increase the risk of birth defects like smoking and weight. And I think sometimes it can be reassuring to women who are Ė most people are very disappointed if they have to take medication when theyíre pregnant. Of course, everyone would rather not take it. But one way you can sort of support people and reassure them is that they have a lot of other healthy things that are reducing their risk even though they have to take medication.
And I think another thing is because the, you know, information is constantly accumulating that itís fine when you see someone to say, listen Iím gonna stop and get some more information. And you can send people for a consultation with like a reproductive psychiatrist or take some time to speak with experts in the field that itís not, itís better to get more information and tell the patient youíre gonna find out rather than just say something off the top of your head.
Things that we think about when weíre trying to decide if a woman has to be on medication during pregnancy is how severe her illness is and also whatís happened in prior pregnancies. So if a woman has had postpartum depression before or pregnancy-related depression before, weíre much less likely to have them go through that again. And then, among women with depression, I mean there is a huge range in severity and some people may be able to make it through a pregnancy with more, without their sleeping pills or without some medications that theyíre taking.
In terms of psychological factors that are gonna make people more at risk for having depression during pregnancy or postpartum, people that have had more conflictual experiences with their own mothers or with their partners are gonna be at more risk, level of spousal support is really important for how women are gonna do. You know, a lot of women are not comfortable with the idea of being on medication and if they do have to take it, you want to be able to support them with it.
Now we do know that for people that are on medication, there are high relapse rates for stopping medication. So with depression, those kind of landmark three-site study that was published in 2006 found that sixty-eight percent of women that stopped their medication during pregnancy relapsed. So thatís really a high number. And then, even twenty-six percent who didnít stop their medication had a relapse during pregnancy.
And same thing with bipolar disorder, thereís a fifty percent chance of relapse for women who stop taking lithium during pregnancy. And as Iím sure you all know that the, even though the risk of having a bipolar disorder relapse when you go off medication is the same whether youíre pregnant or not, pregnancy doesnít seem to affect it, but once you hit that first month postpartum the risk of relapse goes way up.
Another thing I think is very important is to communicate with the patients OB/GYN, with other mental health and medical providers because thereís a lot of conflicting information out there and itís very hard for the patient whoís gotta make this difficult decision to do it if sheís getting different information from different providers. And one of the big problems that still exists but itís gonna go away soon are these FDA categories where they rank the medications as a Level A, B, C or Category A, B, C or D because they can, a lot of times, be very misleading.
Even something with a very low, very rare risk could be labeled a D even though itís a serious risk, itís very uncommon whereas something that we donít know much about could be a B. And also thereís studies that get a lot of publicity these days and person mightíve, you know, another medication provider might have seen one study and be going on that and not taking it in the context of all the other information thatís out there.
So you hopefully you can all come to a plan together so the patient isnít getting mixed messages.
So, some general principles, you want to try to get the person down to one medication and if you do make any changes you want to taper really gradually. A lot of medications the levels go down as the itís very common to need to increase the dose of medications during pregnancy. And, for some women, you want to see if they may consider tolerating more symptoms during pregnancy to try to reduce the amount of drug exposure to the fetus. And then, of course, we want to try and maximize non-pharmocologic approaches and Iím gonna review those at the end.
Iím just gonna mention why a lot of times women need higher doses as the pregnancy progresses is their plasma volume gets a lot bigger. Youíve got a lot more body water to distribute the medication within. The filtration rate of the kidneys increases and thereís less drug binding to proteins. And really all psychotropic medications cross the placenta. Some cross a little more than others but the baby does get exposed to anything that women take.
For lactation, again just some general principles for when youíre thinking about women taking medications during breastfeeding is that there are some animal studies out there and some experimental studies in humans that suggest that rapid weaning or going right from being completely pregnant to completely not breastfeeding can excerbate anxiety and depression so if youíve got, you might want to encourage women to more gradually wean if theyíre going back to work rather than stopping all of a sudden.
And another thing thatís become, that people are becoming more aware of, is that some women have a really dysphoric response to breastfeeding. Although most people, when they are breastfeeding, will have this letdown of oxytocin and theyíll feel relaxation and, you know, optimally go to sleep when the baby goes to sleep after a feeding. There are women who, and thereís a website about this, I donít know if anyone has seen this, thereís kind of an online group about this but they actually feel very bad when they have milk letdown so they must have some unusual mood response to the lactactional hormones.
So Iíve seen that and Iíve also seen women who get much better when they stop breastfeeding so even though in general we think breastfeeding probably has positive mood effects there are some women who have different responses to it. And you wouldnít know that until this person stops breastfeeding but if they go into another pregnancy you keep that in mind that it may not be the best situation for them.
And another general principle is the exposure to medication is usually much, much less when youíre breastfeeding compared to being pregnant. The only exception, because when people take a pill, that pillís dissolved in your bloodstream and so the levels in your bloodstream are usually the levels that are in the milk. So in a good example of that is if someone has a drink of alcohol thereís gonna be the same level of alcohol in the bloodstream as in the milk but within about three hours the alcohol is gonna be gone. Itís gonna be out of your bloodstream and out of the breast milk so you can use that same principle for most medications except, unfortunately, for mood stablizers. And these are the women who, again, who need the medication the most. And unfortunately, most mood stablizers are unusually, have unusually high levels in the breast milk and are gonna end up with higher levels in the infant.
One thing that, I think, is not considered enough is having people sort of partially breastfeed so they can kind of half bottle feed, I mean half use formula and half breast feed. And thatís particularly important for women with mental illnesses, that gives them the option of sleeping through the night and not getting up in the night to breastfeed which is probably helpful in the long run.
Just to mention the new FDA labeling thatís going into effect within the next year or two is that theyíre gonna have, on those labels theyíre gonna have, first of all which I think is great, how to sign up for a registry. So if a woman is going to be taking a medication during pregnancy itís really important to sign up for registries. Thatís the only way weíre gonna find out what the real adverse effects are of these medications and I have them listed at the end of the handout, registries that can be contacted.
And then theyíre gonna list the background risk of different birth defects and say whatís the likely, how much exposure a fetus will get if the motherís taking the medication and also consider the amount of exposure to the baby and the damage if the mother, a lot of people are taking medication before they know theyíre pregnant and so whatís the risk to the baby if that small, that few weeks of early exposure. Theyíre gonna give you the risks of no treatment which will be helpful for people making decisions and discuss whether the dosing should be adjusted during pregnancy.
So, anyway, I think when this comes out, itís gonna be a lot more helpful and people are gonna be able to make a lot more informed decisions.
A couple things I want to mention that you need to think about is that a lot of women get restless legs syndrome during pregnancy and that, you know, is more of a medical condition. It can be treated with iron replacement and another thing thatís a very, can masquerade as a psychiatric problem, is postpartum hypothyroidism. A lot of women have anti-thyroid antibodies which are not a problem at all, you would never know that you had them, but if youíve got, I think about twenty percent of women in the twenties, and thirty percent of women in their thirties, it sort of goes up with age. But if you have anti, if youíre one of those women with anti-thyroid antibodies thereís like a thirty percent chance that youíre gonna get clinically hyperthyroid postpartum and that usually peaks at three to four months postpartum so that could present as anxiety and depression, mainly anxiety and agitation.
So thatís the one medical condition thatís very common in women with postpartum depression that we need to screen for.
Thereís a couple things that you get in the course of OB/GYN care that can exacerbate anxiety. One is beta-agonists are commonly given to try to help premature labor and this could make people more anxious and also metaclopramide, which is sometimes given to stimulate milk production postpartum, gets in the brain very easily and can have psychiatric side effects.
So obviously the most common medications used during pregnancy are antidepressants. And in 2006, it was estimated that ninety-two thousands infants a year are exposed to SSRIs in the U.S. And we use these antidepressants for anxiety disorders as well as depression.
So far, you know, thereís been so much more study of psychiatric medications during pregnancy than there have been of other types of medication which is a good thing and I think we always wish we had more data but we do have a fair amount now so we can say with pretty much confidence that the serotonin reuptake inhibitors are not associated with increased risk of birth defects. Thereís still some controversy about paroxetine or Paxil so I think that one may be a little more question about that so you might not use that as your first choice.
A study came out in the last couple years from Sweden and there they have very good records of birth defects and they have very good prescription records of what women took so they have huge, you know they have studies with over a million women in them, and they actually found that tricyclics have a double the risk of heart defects and I think, up until now weíve been thinking that tricyclics have been around a long time, we donít think that thereís a problem with them but actually this would give you some evidence to use a serotonin reuptake inhibitor instead of a tricyclic if you had a choice.
We have limited information on the other kinds of antidepressants but so far nothing has indicated that they cause any kind of birth defects. So, paroxetine is one thatís been, that people are most concerned about, itís been changed from Category C to Category D. From the registry information, from the manufacturer, they found, they reported that the risk of birth defects was four percent versus two percent with other antidepressants but then there have been other prospective studies where they donít find an effect.
But the birth defect they do see is some cardiac malformations and I think you hear that the most about heart malformations and I think the reason for that is that the heart is extremely complicated, the way that itís formed. One time I was at a, actually a OTIS meeting and the people had two of the very long blow-up balloons and the person was a teratologist and they twisted the balloons together to show how the heart forms and it is like very complicated how these two tubes go together and where they fuse. So thatís why I think if somethingís gonna cause a birth defect it often happens in the heart.
Now this is a study that I helped out with a little bit that was done at Cornell and this is what we donít think about is birth defects in men. And I think itís unfortunate that thereís been so much attention focused on what the woman was taking and trying to associate that with the childrenís birth defects and we may have been ignoring the fathers. So this is a study where they, it was done in the urology department, and they had normal men, not pregnant or anything, they had them give sperm and then go on Paxil or paroxetine for eight weeks and then continue to give sperm samples during the time they were on the Paxil and then they went off. And they didnít see any change in the sperm counts or the sperm morphology but they did see a big difference in the amount of DNA fragmentation so the nucleus thatís in the cell of the, the nucleus is that part of the sperm that contains the DNA and what they found is that baseline, thereís an amount of DNA fragmentation that is thought to be normal and it partly depends on how long it takes the sperm to get through all the tubules, the longer it takes to get through the more chance of the DNA getting degraded and this is the amount of clinically significant, so ten percent of the men had a clinically significant amount of DNA fragmentation so this has been associated with infertility and possibly with birth defects.
But in these are just normal men that were getting paid to do this. When they were on the Paxil, fifty percent of them had this clinically significant amount of DNA fragmentation. So there havenít been any other studies like this and the person that did it is now up at Harvard and Iím sure theyíre gonna be doing more follow-up studies, but I think this may be something that weíve ignored is what happens, you know, because youíve probably heard that in older fathers thereís more risk of autism and more risk of birth defects, but this may be, SSRIs in the fathers may have an effect too.
Now the main reason I would say now that people are afraid to take SSRIs during pregnancy is now that the fears about birth defects have been pretty much laid to rest, now people are very worried about pulmonary hypertension. The official name of the diagnosis is persistent pulmonary hypertension of the newborn.
And this concern came out, there was a study in the New England Journal done by Christina Chambers. It came out in 2006 and this was going through a database in California. And what they did was talked to all the women who had, where their babies had pulmonary hypertension right after birth, and they went back and asked them, what medications are you taking? And they found that the there was six times greater risk of having pulmonary hypertension if the mothers were taking an SSRI in the second half of pregnancy.
And this was surprising but itís a very rare illness, so, I personally have never seen somebody whose baby had pulmonary hypertension and talking to other psychiatrists that work at centers where they see a lot of women on antidepressants no one has ever seen this but it did come out in this large database study. And it does, there is a possible mechanism for this because, when babies are in utero, all the blood vessels in their lungs are squeezed down because thereís no air coming through their lungs and thereís not doing any breathing so right when the baby is born, all those vessels have to open up and then the flow through the heart has to change and the shunt, thereís a couple like the ductos arteriosis and the Ö valley close off and thereís a lot of adjustment in the blood flow through the heart and the lungs right when the baby is born. And serotonin is very involved in the elasticity of the vessels in the lung and so itís conceivable that serotonin reuptake inhibitors could have this effect.
But thereís a lot of problems with this study. First of all, they had very small numbers of babies who actually had pulmonary hypertension, even though it was statistically significant. And the design of the study where they went and asked the women who had the baby with this, you know, serious medical problem whether they took SSRIs or not, thereís a tendency towards recall bias where someone who had a sick baby might remember more taking antidepressants versus someone who didnít.
The other strange thing is they used a very low threshold for diagnosis of pulmonary hypertension so a lot of these babies didnít even have echocardiograms, which seems strange, and they also compared the oxygen saturation between the right and left arms and the criteria they used was half of whatís normally used for pulmonary hypertension.
So they found a much higher rate of pulmonary hypertension than is normally diagnosed.
Now thereíve been three more studies and two did not confirm the finding but one did. And the one that did is from the Swedish group that, again, has a million pregnancies to look at. So I think there probably is some signal there but they found the rates were much less common.
So, probably, the baseline rate in the population is about one in two thousand and it might go up, if these studies are true, it might go up to one in five hundred. But again, thatís something that, itís such a rare illness, that itís, I think people are over-reacting to it and letting this play into their decision whether to take an SSRI or not.
And the other thing we donít know is what happened to these babies. So pulmonary hypertension can be a fatal illness or it can be something very transient and the vessels open up and the babies are fine. And thereís really been no published follow-up of these babies except for the Swedish study. They found eleven babies who had this and they all did fine. There havenít been any deaths that have been known from this so I think thatís something that we need to look in more.
Weíre doing a study, actually, now at Cornell where weíre looking for subclinical levels of pulmonary hypertension and what weíre gonna do is see if the babies have increased pulmonary resistance but without actually having pulmonary hypertension.
Other risks besides pulmonary hypertension of taking SSRIs during pregnancy is there have been reports of babies having shorter gestation, like being born two or three weeks early. A problem with this is babies that are, when mothers are depressed, babies are born two or three weeks early on average so itís hard to know if thatís from the antidepressant or if itís from being depressed.
Thereís been one report of pre-eclampsia in women taking SSRIs. But again, the same as with the pulmonary hypertension studies, with all these birth outcome risks of SSRIs, the problem is all these things like pre-eclampsi aand prematurity are increased risks if people are overweight or if they smoke. Thereís a lot of physical conditions and behaviors associated with depression that can cause these outcomes so itís hard to know if theyíre due to the SSRIs or the people being depressed.
And then finally, the other negative effect of taking SSRIs during pregnancy is this neonatal abstinence syndrome. Now this definitely happens, I think this definitely is a risk of taking SSRIs during pregnancy. But again, itís something that seems to be relatively mild. Usually what, it happens to about thirty percent of babies exposed to SSRIs and it seems to include irritability, increased jitteriness, trouble feeding. It seems to, it can come on anywhere up to forty-eight hours after delivery and seems to last for a couple days.
One interesting, so this has led to people recommending tapering the serotonin reuptake inhibitors in the last trimester of pregnancy and there was just one study came out recently where they compared women who tapered off their SSRIs to people who didnít in the third trimester. And they didnít find any reduction in the risk of this syndrome. So the authors, this was from Tim Oberlander who is in Canada, so he was suggesting maybe being depressed causes this syndrome. I think itís a little early to say that but I think it definitely calls into question the idea of tapering these antidepressants during the third trimester.
A lot of times if a personís got a more severe illness, more of a history of depressive episodes or more severe depression in their history, I would be more reluctant to taper in the third trimester because you really want the person to be well when they have the baby. So if youíre tapering off theyíre kind of at lower levels of medication right when they need to be at their best. So I think that practice is not, thereís not a lot of support for tapering the medications at this point. And also, because once you get to, because that neonatal withdrawal syndrome is so limited and thereís some question of whether it may even be happening in utero that the babies may be more jittery actually when theyíre in utero too.
But, in any case, this neonatal abstinence syndrome, even though itís fairly common, itís actually very short limited and generally doesnít require any treatment.
As I mentioned, these other antidepressants, we have less data on them. Venlafaxin, bupropion, trazodone and mirtazipine but again we donít have the limited data we have doesnít suggest that thereís any increased risk of birth defects or premature delivery. So again, you wouldnít choose these first but if this is the only thing that people get better on, I think an argument can be made to stick with these medications.
Now interestingly, mirtazipine, which is also called Remeron is the brand name, that has, thereíve been accumulating numbers of case reports that this can actually be very effective for hyperemesis so and I personally have seen women who have not had relief from the usual things that their OBs have given them and have gotten like better on mirtazipine really quickly. So for someone who had hypermesis this would be an antidepressant to consider or even if theyíre not depressed, people have been taking this.
There have been a few follow-up studies of the infants that were exposed to SSRIs during pregnancy and they seem to do well. So there really hasnít been, thereís one paper which Iím not listing here on this slide that did report some negative developmental effects of SSRI exposure but those babies were also on benzodiazepine so during pregnancy. So I think in terms of just the SSRIs we donít think that it affects the childís development but again this is an area where we need a lot more data.
In terms of benzodiazepines, so once we get away from the antidepressants, then weíve got much less information. In terms of benzodiazepines,there used to be worries that they could cause cleft palate but those studies were done with the older things like Valium and Librium, which we donít use much anymore. So we donít think that thereís much risk of birth defects with using benzodiazepines during pregnancy but they can have an impact on the baby when theyíre born, things like withdrawal symptoms, low-vent, not breathing enough, being irritable, floppy baby syndrome. So you want to limit this as much as you can during pregnancy but I think a PRN of a benzodiazepine is not a big problem.
You want to use agents with a short half-life. The two shortest Ė Oxazepam or serax and Lorazepam, ativan - have much shorter half-lifes than klonopin does.
And then, thinking about mood stabilizers, the four that people use most commonly are lithium, valproic acid, carbamazepine and lamotrigine. Now the, Iíve listed the first two, lithium and valproic acid seem to have the most risk of birth defects and a paper just came out in the past few months where we never had this information before, but this paper found with lamotrigine and with carbamazepine there were more, higher doses increased the risk of birth defects. So I think thereís an argument for getting people on lower doses if they can tolerate it.
Now with lithium I have, people are most worried about this serious heart defect called Ebsteinís anomaly, it happens in one in a thousand people so again thatís quite rare. But it also increases the risk of cardiac defects in general somewhere between three and seven times so if a woman does need to take lithium during pregnancy itís important to get a fetal echocardiogram where they can actually look at the infantís heart and besides increase in the risk of heart defects it seems lithium just overall increases the risk of birth defects, about twofold.
So one thing a lot of women consider is going off lithium in the first trimester and going back on after theyíve gotten through the period when organs are developing.
Other risks of lithium, once you get past the first trimester are, there have been case reports of fetal goiter, polyhydramnios, which is sort of too much amniotic fluid, prematurity and obstetric complications. People with higher blood levels have more birth complications and thereís, the only thing we have about behavioral effects on the babies, on the children as they grow up is from 1976 and that five-year follow-up study of sixty children didnít seem to find any adverse developmental effects of lithium exposure.
So when you, if you have a woman taking lithium you want to follow her electrolytes and her thyroid function, you want to watch the level really closely because this is something where as the, as the womanís blood volume increases you may need to increase the level. And then with delivery, you get this huge drop in the fluid level so you need to bring it back to where it was before.
Valproic acid is the one thing that you really donít want to have pregnant women taking. Sometimes when women have seizure disorders and this is the only option they have to take it and they do, but it, valproic acid tends to have higher levels in the fetus than in the mother. Itís a dihydrofolate reductase inhibitor, itís particularly associated with neural tube defects like spina bifida and those can be of varying severity, the baby could have a small defect or it actually could have a fatal level of a defect.
So if you have any patients that are taking valproic acid or depakote you really want to be careful with them about birth control and you know planning their pregnancy. Babies tend to have abnormal faces with kind of a thin, arched eyebrows, a broad nasal bridge, they can have genitourinary defects, renal abnormalities, pulmonary abnormalities and they actually have cognitive deficits and itís not really clear if that occurs during the brain development or later on in the pregnancy and itís been associated with increased risk of autism spectrum disorders.
Carbamazepine has less so if you had to choose between carbamazepine and valprioc acid, you should go with carbamazepine because itís got less chance of birth defects and with carbamazepine the risk of neural tube defects is reduced by giving folate supplementation but so far that hasnít been shown to reduce the risk with valproic acid.
Kind of our favorite mood stabilizer at this point for woman that are pregnant is lamotrigine. It does, itís there are a couple big registries, thereís four now with about seven hundred infants in each registry and it does not seem to be associated with increased risk of birth defects although that study that just came out suggested that if, which is a large study of like seventy different sites in Europe, they found that if women were on a high dose, over three hundred milligrams a day, there might be an increased risk of birth defects.
So an alternative to lithium for women with bipolar disorder is to take neuroleptics and, again, kind of like we thought with antidepressants we thought, well, with the old ones are probably safer but it turns out we have really very little data about the older neuroleptics, the typical neuroleptics like haldol or stelazine.
We do know that babies can get extra parametal symptoms that may persist for several months postpartum but thatís a rare instance. The terato-, so far we wish we had a lot more data but right now there does not seem to be an increased risk of birth defects. We can say that tentatively. Weíve got the most case reports for alanzapine and klozapine and quetiapine.
One of the problems with taking these atypical neuroleptics during pregnancy is, you know, even for not pregnant people, it tends to make people gain a lot more weight. So that can put you at risk for gestational diabetes so the risk of gestational diabetes is doubled and the risk of C-section is increased by forty percent in women who take these medications.
Thereís been one study looking at how these atypical neuroleptics cross the placenta and quetiapine or seroquil seem to cross them the least so that seems to be, is becoming more popular.
Some other things people can use as mood stablizers, thereís a calcium channel blocker, verapamil, thatís used a lot for migraines and does seem to be safe during pregnancy and there is some evidence that it can be effective for bipolar disorder. As I mentioned, the benzodiazepines can be used for people with bipolar disorder and, recently, we finally have a study about Ambien. This is something thatís prescribed very liberally by OB/GYNs, which we had no data about its safety. But now a study has come out, again from Scandinavia saying that it does not seem to cause birth defects.
ECT is another option for women who have bipolar disorder during pregnancy. Thereís some alterations of the anesthesia procedure for it but it can be done during pregnancy and can be very effective. I mentioned that usually the exposure to drugs during lactation is much, much less many many fold less than it is during pregnancy.
Kind of our two favorite antidepressants for lactating women are sertraline and paroxetine. Usually the plasma levels so, you know, you take the drug, it goes into your bloodstream, it goes into your breast milk but then when the baby swallows the breast milk, it has to go through their liver before it gets into their general bloodstream so a lot of the drug can be metabolized in the babyís liver so we find that with sertraline and paroxetine, itís very difficult, the levels are usually not detectable in the babyís bloodstream so, and that very reassuring so these are usually our first choices just because we know more about infant blood levels with them.
If youíre gonna choose between the two, you may tend to pick sertraline because it would be safer during pregnancy than paroxetine.
Neuroleptics, we have nowhere near as much as data as weíd like, but it does seem that levels are low in breast milk and that when it is measured in infants, the levels are low and unfortunately we have the most data on olanzapine which makes people gain the most weight.
Klozapine, you would want to avoid breastfeeding if someoneís taking klozapine because it does concentrate in breast milk and there have been reports of agranular cytosis in the babies.
Benzodiazepines, again, unfortunately very limited data but they donít seem to get into the breast milk very much. So, again, for PRN use and once in a while use, I donít think that would be absolutely contradicated.
As I mentioned before, these mood stabilizers which are for women who are more severely ill, do tend to get into the breast milk except for valproic acid. So valproic acid, thatís the really bad one during pregnancy, but actually is compatible with breastfeeding. It seems to have very low levels in the milk and in the infant serum. Carbomazepine has a little bit higher levels in the infant, but lithium, the levels tend to be thirty percent of whatís in the mother so some people do breastfeed on lithium but theyíve got to know theyíre giving their baby a significant exposure to lithium. Same thing with lamotrigine, the levels are about thirty percent in the baby compared to the mother.
Now hereís what, I just want to mention some of these alternatives that should really be maximized if possible during pregnancy. One thing is trying to get people on a regular schedule. Ellen Frank has really developed this approach called chronotherapy for bipolar disorder which can be very helpful. I think sleep, which several of the other speakers have mentioned this, is really important. Thereís all these other kinds of interventions like exercise, stress reduction, yoga and meditation are gonna be able, hopefully be able to reduce the amount of medication people need to take. We donít have good data that omega-3 fatty acids can prevent depression during pregnancy or as a treatment but they certainly, you know, are safe and we usually recommend that people try that.
Light therapy, again, we havenít had any studies that have been very supportive of it but itís known to help depression in general so thatís something that people can do thatís safe during pregnancy. Again, we really want to maximize psychotherapy. And a lot of times, weíre so medication-focused these days that a lot of women have been on medication for years and never even tried any psychotherapy. I think that sometimes getting pregnant can be an opportunity to see how much symptom relief they can get from psychotherapy rather than medication.
So, people that plan their pregnancy ahead of time, they can taper off their medication, try psychotherapy and see if they can stay well like that. But itís hard to do once theyíve gotten pregnant.
Then Iíve listed at the, in the last few slides in the handout, some Internet resources where you can get the most up-to-date information about medication. The second one on this slide is a place where you can learn about light therapy, itís the Center for Environmental Therapeutics and they give directions there for how to use light therapy and they also sell a device thatís very good. I think itís like two hundred dollars.
And these are some sites where you can look up information about drug exposures during pregnancy and lactation. And for people that want to get more education about medication during pregnancy, I donít know if thereís any nurse-practitioners out there, all three of these organizations have meetings every year which can be a really great opportunity to get up-to-date and they also have listservs you can get on which are constantly communicating information and questions about medications during pregnancy and postpartum.
Oh, and the last thing I wanted to mention was these pregnancy registries. So if you have patients taking atypical antipsychotics or any of the mood stabilizers, itís really important to have them sign up for these registries so we can get more information about the medications.
Oh and then I mentioned here if you want to send a patient for a consultation or referral, I just listed these three programs in New York City. Thereís Payne Whitney Womenís Program where I work. I would say the only thing different about ours is we are in-network with insurance, a lot of insurance plans and also Medicare and Medicaid. So weíll see people in an ongoing way but also just in consultation and get back to their provider and also there are programs at Columbia and NYU.
Thatís it. Thanks.
I donít think thereís any questions.
Speaker: If you have any questions, please raise your hand. That way we can see you, weíll come over with the mic.
Susan Ellis Murphy: Just a couple things before we end our day. First of all, I believe there were a few more, but I believe thereís at least one survivor of postpartum, of a postpartum mood disorder in the audience. If that person, or anyone else, would like to be recognized by standing up, we would certainly appreciate it.
On behalf of the audience, I want to say thank you for standing and thank you for people like you who teach us every day. We learn the most.
A couple more things. There are extra hunter green bags out there. When you go out to get your certificate, we will give you your certificate when you give us your evaluation and then you could pick up some extra bags if you would like.
As well as the fact that Dr. Sanford asked me to give you a message. There were people who wanted copies of her stress diary, if you would email her at realmoms, firstname.lastname@example.org, she will send it to you.
If you do decide that youíre going to use it, the copyright was left off at the bottom of her handout, she would ask that you would just include her copyright on the bottom if you do reproduce it.
So thank you, I hope you enjoyed your day and we hope to see you again soon. Take care.
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Last Modified: Thursday, 12-Jul-12 11:44:32