What do you think? Leave a respectful comment.

Why do pregnant women get confusing guidance about alcohol?

How much alcohol can cause fetal alcohol spectrum disorder, a difficult to diagnose condition, sometimes called an "invisible disability"? Doctors don't know. While official guidelines say no amount of alcohol is safe to drink during pregnancy, women often receive mixed signals, even from their own physicians. Amna Nawaz reports.

Read the Full Transcript

  • Judy Woodruff:

    But first, the dangers of drinking while pregnant.

    Amna Nawaz reports from Minnesota on the challenges faced by families who are living with fetal alcohol spectrum disorders.

    The effects last a lifetime. And there is no known cure.

    It’s the second of her two stories on the subject.

  • Amna Nawaz:

    The De Campo Salles house is a hive of activity. Olivia helps out in the kitchen. Tasha trains the family dogs.

    And overseeing it all are Mama Sue and Mama Jo, Susanna and her wife, Jolynn.

    Their dream of starting a family came true when they adopted Tasha from Russia at just 18 months old. But back home in Minneapolis, they noticed unusual behavior.

  • Susanna De Campo Salles:

    She wasn’t able to sit still like the other kids. She used to have a weighted vest. She had a lot of sensory needs. She would cry for hours. I had to hold her really tight and rock her for probably an hour-and-a-half to two hours. And she wouldn’t stop crying.

  • Amna Nawaz:

    Early on, doctors noted Tasha’s hyperactivity and inability to focus, and diagnosed her with ADHD. But treatment didn’t help.

    Years and several tests later, when she was 9, Tasha was diagnosed with fetal alcohol spectrum disorder, or FASD.

  • Jolynn De Campo Salles:

    It was scary. You know, it’s like, OK, what’s her — what’s her future going to be? You know, what’s the next 20 years going to look like?

    And, from what we heard, it sounded pretty bleak. But then, once you kind of get past that first shock, then you just dig in, get into gear and go.

  • Amna Nawaz:

    Ruth Richardson of the Minnesota Organization on Fetal Alcohol Syndrome says, because symptoms can overlap with other disorders, doctors often miss an FASD diagnosis.

  • Ruth Richardson:

    And those kids who really have what we see as an invisible disability, where they don’t have any of the sort of physical manifestations of the disability, but they have got this brain injury, those kids are at such high risk of falling through the cracks.

    Because they look typical, people expect typical from them, but they have got a brain injury. And because of that, those kids are oftentimes set up for failure within our communities.

  • Amna Nawaz:

    Tasha is now 16 years old.

    Do you remember when your parents first told you about FASD?

  • Tasha De Campo Salles:

    I think I was like 9. And I was like, I don’t really care, because, like, I was young. I was like, OK.

    I just thought it was like ADHD. But it didn’t really affect me when I was younger. It kind of affected me more when I was like in high school, because then I really started noticing stuff.

  • Amna Nawaz:

    Like, what did you notice?

  • Tasha De Campo Salles:

    I noticed that I got more angry and more irritable and more impulsive. Like, there was this one time. One of my friends dared me to jump out the bus window, and so I did.

  • Amna Nawaz:

    To jump out of the bus window?

  • Tasha De Campo Salles:

    Yes.

  • Amna Nawaz:

    While it was moving?

  • Tasha De Campo Salles:

    No, it was like stopping.

  • Amna Nawaz:

    Still.

  • Tasha De Campo Salles:

    Yes.

  • Amna Nawaz:

    Did you hurt yourself?

  • Tasha De Campo Salles:

    I didn’t hurt myself, because I’m a gymnast and everything. So, I do the landing, whatever.

    Olivia, who’s also 16, joined the family a few years ago when she needed a stable place to live. She’d been diagnosed with bipolar disorder at a young age, but the De Campo Salles knew her birth mother drank while she was pregnant, and Olivia was ultimately diagnosed with FASD in 2015.

  • Olivia De Campo Salles:

     It never really comes up at all, because it’s not like something you can physically see or you can physically feel. It’s just something you have, because I look perfectly normal to everyone else.

  • Amna Nawaz:

    Because doctors don’t know how much alcohol can cause FASD, the official guidelines say that no amount is safe during pregnancy.

    Still, according to the CDC, about one in 10 pregnant women in the U.S. report having at least one alcoholic beverage while pregnant. Why? Mixed messages from doctors, not all of whom advocate for total alcohol abstinence, and from the media, where conflicting studies can lead to confusing headlines.

    Pediatrician Judith Eckerle says, because so many individual health factors play a role, the safest medical advice is to avoid drinking at all during pregnancy.

  • Dr. Judith Eckerle:

    Genetics, nutrition, age, how well your liver functions, how many pregnancies you have had, there are just so many different factors that we actually do know impact. We just don’t know what combination or what exactly makes that child have FASD or what prevents it.

  • Amna Nawaz:

    Dr. Yasuko Yamamura is a specialist in high-risk obstetrics. When it comes to FASD, she says, the assumptions, that younger, less educated women are more at risk, are wrong. At the highest risk are college-educated women over the age of 35.

    A lot of women will say there’s no conclusive evidence about a drink every now and again, so if I’m pregnant, why should I change my behavior?

  • Dr. Yasuko Yamamura:

    You know, I think the absence of conclusive evidence doesn’t necessarily imply that there is evidence of absence of harm.

    So, I think, if they’re properly educated and advised by their O.B. provider, that the safest course would be to completely avoid alcohol consumption during pregnancy, that many women would choose to follow that advice.

  • Amna Nawaz:

    Because of interest from elected officials years ago, Minnesota today in many ways is on the front lines of FASD in terms of resources and research. But advocates and medical experts say, even now, their single biggest hurdle is awareness.

  • Ruth Richardson:

    This is a disability that has so much stigma around it, that it keeps people from talking about it. Secrets and stigma, those are things that keep people quiet, and it also keeps people from getting the help that they need.

  • Carol Peterson:

    I just felt ashamed. I felt the shame like you know who would drink alcohol when they’re pregnant.

  • Amna Nawaz:

    Carol Peterson lives in Northern Minnesota, with her daughter Kylene (ph), 27, and their dog, Papa Jack; 28 years ago, Carol unexpectedly became pregnant.

  • Carol Peterson:

    I kept saying, it’s — this can’t be right. It can’t be true, no. And then the thought came to me that I had been drinking. I had been drinking every day. And so I was scared. I didn’t know what that do.

  • Amna Nawaz:

    As Kylene grew, Carol says she pestered doctors about developmental delays and behavioral issues.

  • Carol Peterson:

    She would just start raging, rage, screaming, trying to grab you, kick you, hit you.

  • Amna Nawaz:

    For a few seconds, a few minutes?

  • Carol Peterson:

    Oh, no, no. It would go on for hours, hours.

  • Amna Nawaz:

    It took six years before Kylene was officially diagnosed with FASD.

  • Carol Peterson:

    And they sent me home with literature, and I just — I thought, I am going to learn this as well as I possibly can and do everything I can possibly do to help her and undo this, try to undo it, what I had done.

  • Amna Nawaz:

    Why was that so important to you?

  • Carol Peterson:

    I just wanted her to have the best life she could have. I felt bad that I had taken something away from her.

  • Amna Nawaz:

    All these years later, she says her family still finds it difficult to talk about Kylene’s FASD. Her daughter will need lifelong support. Right now, Carol is her sole caregiver.

  • Carol Peterson:

    Sometimes, when she gets angry with me or starts having a meltdown, she starts saying, why did you have to drink with me? Why did you do this. I’m mad at you.

    But, for the most part, she knows I love her.

  • Amna Nawaz:

    A love, Carol says, she hopes can make up for past mistakes, and a story she’s glad to share, so that others won’t do the same.

    For the “PBS NewsHour,” I’m Amna Nawaz in Northern Minnesota.

  • Judy Woodruff:

    Amna and our “NewsHour” team have more on the story behind the story and what they learned reporting on fetal alcohol disorder.

    You can read it online at PBS.org/NewsHour.

Listen to this Segment

The Latest