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The story about drinking while pregnant that got our newsroom talking

On tonight’s PBS NewsHour, National Correspondent Amna Nawaz reports from Minnesota on a subject often referred to as the “invisible disability:” Fetal Alcohol Spectrum Disorder, or FASD, which can occur when a mother drinks during pregnancy. Symptoms, which include impulse control, hyperactivity and short attention span, can look a lot like ADHD, and a recent study shows that as much as 5 percent of the U.S. population could be affected. This means it could be more common than autism. Many children with FASD go through multiple misdiagnoses and many don’t ever get diagnosed.

Here Nawaz joins producer Lorna Baldwin and Dr. Amber Robins, a NewsHour medical fellow, to discuss the reporting that went into the piece and the people they met living with the disorder.

From: Amna Nawaz
Sent: Monday, July 23, 2018 12:19 PM
To: Lorna Baldwin; Amber Robins
Subject: Reporting the FASD story

I’ll be honest, when we first launched on this story, Fetal Alcohol Spectrum Disorder was not something I knew much about. I went through two pregnancies and deliveries in the last five years. The journalist in me read and studied aaalllll the information I could during that time. Or so I thought. How did I not know more about something as serious as FASD? How many other women out there were in the same boat?

That’s why it didn’t surprise me at all to learn that awareness is still – 45 years after FASD was first defined– one of the biggest challenges for advocates. That most women aren’t aware that we have no idea how much or how little alcohol can cause FASD. That, yes, a glass of wine every now and again in your third trimester might be totally fine, or it might cause irreparable brain damage in your baby. And that it all rides on a complicated matrix of chemistry and genetics and neurobiology that the science has not yet figured out (because how many pregnant women would volunteer as subjects in that study?)

I know of more friends than I can count who had a drink every now and again during their pregnancies. During my own third trimesters, I drank an occasional glass of wine. Reporting this story, it broke my heart to hear mothers share the guilt and shame they felt talking openly about their alcohol consumption. And while I was baffled to learn what we don’t yet know about FASD, I was also deeply disturbed by everything we do.

From: Lorna Baldwin
Sent: Monday, July 23, 2018 12:50 PM
To: Amna Nawaz; Amber Robins
Subject: Re: Reporting the FASD story

Amna, you’re not alone. Disturbed, baffled and surprised are all words that describe what went through my head when this assignment came my way too. As we dove into the research phase, and made calls to experts, I kept coming back to the same question — why isn’t there more known about FASD? And why does a 100 percent preventable disorder afflict so many people? The answer, as we found out, is complicated.

When I rather unscientifically polled friends and family members to see what they knew, it was very little. And more than one person said their doctor told them a drink now and then while pregnant was “no big deal.” That flies in the face of the American College of Obstetricians and Gynecologists guidelines, which we looked up dating back to September 1986: no amount of alcohol use is safe during pregnancy. And that led to a question I kept asking Amber – why is it that some doctors are giving women advice that doesn’t mesh with the professional guidelines? Again, we found out, the answer is complicated.

From: Amber Robins
Sent: Monday, July 23, 2018 1:30 PM
To: Amna Nawaz; Lorna Baldwin
Subject: Re: Reporting the FASD story

Lorna, this topic is a hard one to discuss for health professionals and patients alike because many people don’t talk much about FASD. As a family physician, I was taught in medical school about the impacts of alcohol on pregnancy and what it does to the unborn fetus. Yet it is one thing to learn about it in a classroom and another to meet the families that FASD affects. I remember the moment I read the JAMA study stating that more children have FASD than first thought. Researchers looked at four U.S.communities and found between 1.1 percent to 5 percent of first graders were on the fetal alcohol spectrum. I said, “Wow, this is a story that needs to be told because it touches just about everyone in some way.”

I remember when we went to a FASD teen group activity, a mentoring program for older kids with FASD. One of the leaders of the group who had FASD called it an “invisible disability.” Indeed, FASD is a disability that has flown under the radar and become invisible in many ways. The hope is that our piece sheds more light on the topic. The number one takeaway for me as a physician was that FASD is preventable.

From: Lorna Baldwin
Sent: Monday, July 23, 2018 1:56 PM
To: Amber Robins; Amna Nawaz
Subject: Re: Reporting the FASD story

I think another big takeaway from reporting this story was the extent to which stigma and shame helps perpetuate FASD and how an open dialogue could lead to such different outcomes. And I’d like to acknowledge here how courageous I think it was for Carol Peterson to come forward and tell us her story. She’s faced that stigma and shame for decades and now works with the National Organization on Fetal Alcohol Syndrome as part of a birth mother network that helps train and educate people about fetal alcohol.

From: Amna Nawaz
Sent: Monday, July 23, 2018 2:14 PM
To: Amber Robins; Lorna Baldwin
Subject: Re: Reporting the FASD story

Carol’s story stuck with me too. Here was a woman who needed help, and got it too late. And her daughter is ultimately paying the price. Both of their lives have been forever changed. And I can’t imagine what it must feel like to carry that every day.

The thing of it is, there will undoubtedly be people who question the science. I questioned it too, during the course of our reporting. If we don’t have conclusive evidence that links low-level alcohol consumption with FASD, why should women have to change their behavior? Are we contributing to the policing of women’s bodies? Especially when there is already such a culture of blame and guilt around mothers in America? I know the doctors we spoke with were clear: we know there’s a risk associated with any alcohol consumption during pregnancy. If you want to completely rule out that risk, just don’t drink at all while pregnant. But there are definitely grey areas. What about the months when you’re “trying” but not yet pregnant? What about the weeks when you don’t yet know you’re pregnant? (especially given the huge percentage of unintended pregnancies in the US). There’s so much we don’t know, and that is troubling for a number of reasons. But in the end, it seems like the best we can do is chase down facts, present them for folks to make their own decisions, and hope the science one day catches up to the questions we need answered.