Katherine Stone

is the creator of this blog, and the founder and executive director of Postpartum Progress. She has been named a WebMD Health Hero, one of the fiercest women in America by More magazine, and one of the 15 most influential patient advocates to follow. She is a survivor of postpartum OCD.

Join With Warrior Moms Around the World For Change: Announcing PPD ACT™

It would have really helped if I had known all of my risk factors ahead of getting postpartum anxiety. Maybe that whole hell could have been prevented. I mean, what if someone had said to me, “You have a high likelihood of getting this, so let’s teach you about it and make sure you know what to do and make sure we take good care of you and have a team around you just in case.” Or, what if instead of it taking me AN ENTIRE YEAR!!!! (YES, I’M YELLING) to find the right medication for me, I could have found one right away and gotten better a whole lot sooner?

We know a lot about perinatal mood and anxiety disorders like PPD, yes. But do we know enough? It’s pretty easy to answer that question with a resounding no, because if we did know enough so many moms wouldn’t still be suffering endlessly.

It’s a good thing, then, that some pretty cool people from across the globe are coming together to try and do something about it, starting today. Postpartum Progress is unbelievably proud to join the University of North Carolina School of Medicine, the Queensland Brain Institute in Australia, the National Centre for Mental Health at Cardiff University in the United Kingdom, Apple (yes … that Apple!), and the National Institute of Mental Health in launching PPD ACT™.

What is PPD ACT? It’s an international research study that uses a free iOS app—an app you can get on Apple iTunes for your iPhone or iPad—to gather data from moms who’ve had PPD. And anxiety. And psychosis. All moms. Any mom. If you had it 14 years ago, like me, you can join. If you’re in the midst of it right now, you can join. If you received a diagnosis from a doctor, you can join. If you didn’t but still had the symptoms of PPD, anxiety or psychosis, you can join.

Join the PPD ACT Study Today -postpartumprogress.com

PPD ACT is an Apple ResearchKit app. ResearchKit is an open-source framework developed by Apple that allows researchers to create app-based studies with global reach. Women in the U.S. and Australia can begin using PPD ACT today, and the UK version of the app is coming soon. The study was developed by Samantha Meltzer-Brody, MD, MPH, director of the Perinatal Psychiatry Program at the UNC Center for Women’s Mood Disorders and Patrick Sullivan, MD, director of the UNC Center for Psychiatric Genomics, and will be run by them in partnership with the international PACT Consortium.

So what do you do? Just download the PPD ACT App at the iTunes store, read the information about the study, consent to the study if you want to participate, and answer questions about your experience. That’s phase 1. Easy peasy.

Phase 2 is a genetics study to find the genetic makers for PPD. Depending on the information you shared in phase 1, you may be invited to share your DNA. Don’t worry; there are no needles! We’ll send you a DNA “spit kit,” you’ll spit into a test tube, you’ll ship the test tube back in the packaging provided, and the researchers will use your DNA and that of thousands of other women to find more answers about maternal mental illness. You won’t pay for a single thing. Not the app. Not the spit kit. Not the postage or shipping. Nothing. Also easy peasy, plus spitting for science!!

When we say thousands of women, we mean THOUSANDS. The goal is to get more than 100,000 moms from around the world to participate. If we meet this goal, it will be the largest study and the largest amount of data ever gathered of moms with PPD.

This is HUGE. MONUMENTAL. And it’s going to take work. Postpartum Progress’ motto is “together, stronger.” We have always believed that the voices of the women who have gone through this matter, and that if we all come together we can make sure moms in the future don’t have to struggle as we did. We can make sure our daughters never have to feel alone and defective and filled with shame as new mothers. WE can do something about it.

So here’s your chance, ladies. Join us. Imagine how powerful this can be if we all come together.

For any questions you have, read more about our how we’re participating with PPD ACT, find great images to share on social media, and answers to other questions you might have at this time. We know you’ll have some and we’re here to answer them for you. We hope you’ll share this with all moms in your life so we can reach that goal and find answers to the questions about postpartum depression so more mamas can be helped.

Thank you for being part of our community. You matter.
 

Depression Screening for Pregnant & New Moms Endorsed: Why & What Will This Mean

US Preventive Task Force Recommends Depression Screening for All Moms: We Endorse This Recommendation, But What Does It Mean? -postpartumprogress.com

It is now the official recommendation of the US Preventive Task Force for all pregnant women and new mothers to receive screening for postpartum mood and anxiety disorders. We saw New York City mandate universal depression screening late last year and hoped for widespread change across the country. Now here we are, just barely into 2016, and things are looking up for new moms, babies, and families.

But wait. If you stop to read through any of the comments on either NPR or New York Times‘ articles, you’ll see a lot of negativity regarding this recommendation. It’s easy to get confused by the back and forth, fear-mongering, and general lack of knowledge about PPD and other mood and anxiety disorders. A lot of myths, stereotypes, and stigmas are being perpetuated by people who don’t know much about maternal health or should know better.

We decided to address a few of the myths and stereotypes to clear up the air.

Addressing Myths and Stereotypes on Depression Screening for Pregnant & New Moms

Why didn’t the US Preventive Task Force recommended depression screening for all adults instead of just pregnant women and new moms?

They did. They have now recommended screening for all US adults, they just included pregnant and new moms in their recommendation so that they can be screened for perinatal mood and anxiety disorders like postpartum depression.

What if moms just lie and answer no to the screening questions?

​Some will. Some won’t. No depression screening system is perfect. But the more you ask, the more struggling moms you’ll be able to identify. Helping more mothers is better than helping few.

Meantime, Postpartum Progress and other organizations like the National Coalition of Maternal Mental Health will continue working to reduce stigma, raise awareness, and improve policy so that every mom will feel safe answering the questions truthfully. There is still a lot of work to be done.

Women with mental illness shouldn’t be having kids in the first place.

This is such an offensive line of thinking that it’s hard for us to even respond. If we didn’t have people with mental illness in the world, then the world would have never benefited from:

  • President Abraham Lincoln
  • Walt Disney
  • Authors Charles Dickens, Leo Tolstoy, Ernest Hemingway, Virginia Woolf and JK Rowling
  • Architect Frank Lloyd Wright
  • Artists Georgia O’Keefe, Frida Kahlo, and Vincent Van Gogh
  • Actors Robin Williams and Audrey Hepburn
  • Florence Nightingale
  • Singers Alicia Keys and Nina Simone
  • Composer Ludwig Van Beethoven and Saxophonist Charlie “Bird” Parker
  • Astronaut Buzz Aldrin

Of course people with mental illness are parents. And they may have kids who also have, among many characteristics, a mental illness. And all of them have something to contribute.

Isn’t it silly to say that screening will fix the problem of maternal mental illness?

No one has asserted that screening will fix the problem. It’s simply one part of the problem. We need to find the moms who need help so that we can give it to them. We need to increase access and reduce disparities. We need treatment options that are affordable. We need more research. We need to invest in peer support. But just because all the issues can’t be solved at once doesn’t mean we should attempt to solve one of them.

How will depression screening help if there’s no access to services? There aren’t enough providers.

It’s true that there is a shortage of professional mental health services and clinicians, both in the US and elsewhere, who understand how to treat perinatal mood and anxiety disorders. There are many places where, even if a mom’s screen shows that she may have postpartum depression, there’s no good place to send her for an official diagnosis and treatment. There are a lot of people working on this issue. Postpartum Support International, the Postpartum Stress Center, the California Maternal Mental Health Collaborative and the Seleni Institute, for instance, are all working to train providers. Postpartum Progress is working to train its massive community of maternal mental illness survivors to provide peer support, augment the work of clinicians and fill gaps. Everybody is working overtime on this, and to be honest we need to funding community to support our work so that we can meet the need.

This is about money. This will mainly just benefit drug companies.

The task force isn’t recommending the type of treatment moms should get, only that we should be asking pregnant and new moms how they are doing and checking for symptoms of depression or anxiety.

There are many ways to treat moms, and they depend on the mom, the severity of her symptoms, what works for her and what doesn’t, what she has access to, etc. Therapy is very effective for women with maternal mental illness. Medication is also effective. Group therapy can be effective. And mounting evidence shows that peer support is effective.

It’s certainly possible that drug companies will benefit from increased prescriptions, but that isn’t the point of these recommendations. Does anyone really believe that we should punish mothers and children by sentencing them to the lifelong effects of untreated maternal mental illness just so we can prevent drug companies or therapists from making money? We sure don’t.

What about underserved or minority women and others who distrust the system already and are worried they may lose their children if they answer screening questions honestly?

Health disparities are real. In most places, low-income mothers and mothers of color have less access to good services and have had more of the kinds of experiences that make them feel they may not be safe reaching out for help. It’s terrible, and every community has a lot of work to do to fix that. We need more trauma-informed training of providers and peer supporters. We need people who understand the wide variety of symptoms of perinatal mood and anxiety disorders and who know that the vast majority of mothers with these illnesses are not a danger to anyone. We need more treatment options for moms with limited access, finances, transportation, and childcare. We need more clinicians of color.

We’re not sure how this problem will be fixed unless more funding goes to ensure that affordable treatment options are available and that people who support low-income and minority mothers have received the kind of comprehensive training that ensures that moms who need help won’t be victimized.

What Patients Have to Say

One important place to start a conversation about universal screening for postpartum mood and anxiety disorders is with moms who are currently being treated or who have already been through treatment. We asked a group of our moms what they thought about the articles on NPR and the New York Times, the comments that followed, and the recommendation to screen all moms. They shared some of their personal stories, some of their excitement, some of their misgivings and fears for new moms. They bring an important voice to this discussion as they’re paving the way for how mothers should be treated.

  • “At my six week postpartum check-up, my doctor told me not to watch any sad movies and that I should be fine. I thought postpartum depression was “only” thoughts of hurting your baby or crying all the time, neither of which were part of my constellation of symptoms which were more related to anxiety than depression (i.e.: racing heart, migraines, inability to eat/sleep, numbness in my hands, etc.).It wasn’t until my twins (first pregnancy) were 12 weeks old that I was finally diagnosed. This after significant weight loss, dehydration, ER visits and inability to continue to breastfeed my tiny babies. Fortunately I had family supports and health insurance, but had it not been for those things, I don’t know what my outcome might have been. Screening during and after pregnancy, way beyond six weeks, for ALL perinatal mood disorders is crucial for moms, their babies, and their families.” -Amanda

  • “First of all, I am jumping up and down at this recommendation. If I had been a part of this, I firmly believe that my PPD/PPA/PPOCD would not have gotten to the point that it did. I want to address comments that I saw on the article about this being a way for them to “push more pills.” 1. Not all mothers who are diagnosed with Postpartum Depression require medication. 2. For those that do, it can literally save a life. Also to the person who commented “Any rational, underfinanced person bringing another human into this mess ought to be gripped with anxiety and tension.” I was a completely rational, well-financed, successful, and stable woman when I brought two humans into the world. And I was STILL gripped with anxiety, depression, tension, self-harm, and suicidal ideation. You don’t have to have “made a mistake” for these issues to hit you…and hit you hard.” -Rebecca S.

  • “This is such an important step in the right direction, and I’m very encouraged by this news. Let’s finally make this a standard of care! And I really hope more healthcare providers screen during pregnancy and then after birth as well, and not just one or the other, since the pregnancy period is just as vulnerable to mood disorders.” -Stephanie P

  • “Why does it have to be “recommended” in the first place? It should be something that just IS. Perinatal mood and anxiety disorders exist. Doctors know this. So screening for it should be just as common as checking your blood pressure.” -Jessica L

  • “I think this is a great step in the right direction, and I’m completely 100% on board. I was not screened at any of my appointments after either of my children. My concern is: Would women be completely honest during the screening? I wouldn’t have been prior to my postpartum psychosis crisis, because I didn’t want to be judged or thought of as a less-together mom. I have a feeling other moms wouldn’t be completely honest on screening tools either for the same reasons.” -KD

  • “Many women do not have the financial resources for therapy as a first defense. I firmly believe you can not get well without a combination of talk therapy as well as medications. But again, that is my personal opinion and not always an option. What would be super great would be a reform to mandate that all insurances, including Medicaid, paid for therapy and counseling services. Period. Without a timeline on when one should “be better.” While I am thankful that steps are being taken to help moms, I still think there is a lot of education and work to go!

  • “I think this is such an important step. However, I was screened by a visiting nurse. She asked me questions, and I answered the way I thought I should, not how I was truly feeling. I passed with flying colors. Yet, I was screaming inside, but terrified to let on. I cried for the two days we were at the hospital after my daughter’s birth, at every pediatrician visit, and new mom’s groups. I called our warm line and hung up because I was crying so hard that I couldn’t get words out. Yet, other than that first visiting nurse screening, nobody followed up or offered me help or even seemed to notice when I was screaming out for it.” -Sarah B

  • “I think this article is another step in the right direction towards bringing awareness. Moms should be screened during pregnancy and at well-child visits the first year. I knew to ask for help, but some moms are afraid to. The more this is discussed and normalized, the more we can help moms who suffer in silence. Healthy kids start with healthy moms!” -Joyce M.

  • “What concerns me in the comments to this article is the feeling like “big pharma” is behind all of the research and recommendations. I bet most, if not all of these people commenting have never had to deal with this personally. I told my OBGYNs multiple times that I knew I was more likely to have PPD because my mom is bi-polar and I had depression and anxiety in the past. That was it. I mentioned it and the doctors never talked to me about it. Crying at every single one of my son’s doctor appointments and just being told I am a good mom, not screening me, not thinking maybe this is a little more than being concerned for my baby. If I could have gotten through all of this without meds, by all means I would have. Big Pharma and Big Government have nothing to do with this and wanting to control people and their mental illness.” -Samantha K

  • “I will add [with reference to Big Pharma], not all moms choose medication. I was able to get well without it. I went the natural alternative route and at the end, added in talk therapy. World of difference.” -Audra B

While we know there’s a long road ahead in implementing change and getting all women screened for perinatal mood and anxiety disorders, we strongly agree with the US Preventive Task Force and their recommendations. This is not a cure all. This is not the magic fix to all of our problems. This is a step. And yet, every step we take forward is a good thing. Every barrier we get past may help us as we try to break the barriers that still remain.

Antidepressants During Pregnancy & Autism: A New Study

Antidepressants During Pregnancy & Autism: A New Study -postpartumprogress.com
Making the decision to get treatment for postpartum depression is hard. Making the decision whether to take antidepressants during pregnancy is even harder. I know. I’ve done both.

Any time either of my kids has a problem or shows a vulnerability, the first thought that will come to my head is, “It’s my fault.” For the first kid, now 14, it’s that he had to go through postpartum OCD with me. For the second, now 9, it’s that I chose to stay on my meds while I was pregnant with her so that I would be healthy and hopefully not get it again. (I didn’t, by the way.)

As someone who still struggles with anxiety to this day, I will tell you that it takes very little for my worries to blow up into big hairy nightmares that focus my every waking thought on all the most horrible things that could go wrong for my kids. And my worst fears of all are those where I’m the reason things go wrong.

The only thing that brings me back down out of the Cloud of Terror is data. Numbers. Real information. Could something bad happen? Yes. But what is the likelihood? What is the reality? And could there be other reasons why bad things happen that have nothing to do with me?

This week a study was published in JAMA Pediatrics that found that taking antidepressants during pregnancy may increase the risk of having a child with autism spectrum disorder. Is your heart racing? I know mine is. Uh oh. Here comes the Cloud of Terror again.

Except, wait. Stop. Think. Ask questions about this from people who are experts. Find out the real data.

I reached out to Samantha Meltzer-Brody, MD and Marlene Freeman, MD and asked what they thought about the study. And they said it doesn’t prove much. The rate of autism without exposure to antidepressants is 1%. The rate of autism among children whose moms took antidepressants in trimesters 2 and 3, according to this particular study, is 1.87%. The rate of autism among children whose mothers have anxiety or depression that goes untreated during pregnancy? I don’t know, but it’s a good question.

As Dr. Byan H. King, program director at the Seattle Children’s Autism Center at Seattle Children’s Hospital, pointed out in his editorial about the study, it tells us is that for every 200 moms who continue their antidepressants during pregnancy there may be one more child with autism than would be expected. And yet we still don’t know if the cause for that one more child is the antidepressant or something else. That’s the real data.

I know when you see these headlines it scares the daylights out of you. We’ve already been down this road before, and I’m sure we will again. I would encourage you to stop, breathe, and then read this story from the American Association of the Advancement of Science: “Reality check: Taking antidepressants while pregnant unlikely to double autism risk in kids.” It’s worth the read.

Each mother can only make the best decision she can for herself with the information available to her at that time. I wish it were easier. There’s no right answer. You have to talk to your doctor. You have to recognize there are risks, no matter which decisions we make. There are even risks in making no decisions at all.  You have to know that there are so many other moms out there with the same concerns and worries.  We know what it’s like. You’re not alone.

You might also like: How to Think About the Risk of Autism, The New York Times

We’re Researching ACEs and PPD, and We Need Your Help

Dear Warrior Moms,

If you have been around these parts for awhile, you know that Postpartum Progress is an amazingly strong, supportive, ass-kicking group of women. We have all walked through incredibly dark times, are currently walking through them, or battle the guilt and flashbacks following an arduous recovery. We battled through together. After experiencing a perinatal mood disorder, I know that I personally often look back and say, “Why did this happen to me?!” Although we are stronger because of our struggles, there is power in asking pertinent questions and reflecting on where we have been and how far we have come.

We want you to take an even farther look back, to the time of your life prior to becoming a mom. We want you to imagine your childhood and what shaped you to be the woman that you are today.

So often we analyze our pregnancies, past mental health history, and current life situations when battling a postpartum illness, which are all important frames of reference. But we got to thinking, what if there are factors from childhood that increase a woman’s potential to experience a perinatal mood disorder? What if we could harness information from all of you to understand how to better help protect and support women that might get PPD?

Well Warrior Moms, we are doing just that. We have an exciting research study that we are eager for you to be apart of, something that has never been done before.

In a simple, straight-forward survey that you can take in less than 2 minutes, we will ask you about any Adverse Childhood Experiences (ACEs) you may have had. In Plain Mama English, Adverse Childhood Experiences are traumatic personal or relational situations that took place when you were younger. The Centers for Disease Control have uncovered a link between childhood trauma (ACEs) and chronic diseases developed during adulthood, as well as social and emotional problems including depression and anxiety. We’ll also be asking you questions from about Resiliency, which looks at any protective factors you may have had that would have helped combat the negative effects of ACEs. Measures of resiliency include relationships and supportive infrastructures that encouraged you, offered love, and fostered your self image as a child.

This survey is absolutely anonymous. We want you to answer the questions completely honestly because it helps us see how many moms who’ve have perinatal mood or anxiety disorders may have had traumatic experiences as a child. Also, you can take it at any time, so please make sure you set aside a minute or two to help contribute your information.

We hope that, with your help, we can analyze this childhood data and see how it relates to the frequency of perinatal mood disorders. Again, all responses will be completely anonymous. Please help us gather this important retrospective information that could potentially assist moms in the future! Visit this link to complete the survey: http://fluidsurveys.com/surveys/postpartumprog/warrior-moms-aces/

Please note the survey is open to any mom who has had postpartum depression, postpartum anxiety, postpartum OCD, postpartum psychosis, postpartum bipolar onset, postpartum PTSD or anxiety or depression during pregnancy. It doesn’t matter if you are struggling with this illness now or did so in the past.

Please take our survey on Adverse Childhood Experiences and Postpartum Depression. -postpartumprogress.com
Thank you endlessly for your participation and support.
Your inner child also thanks you :o)

-Maria Weiters for Postpartum Progress