PBS高端访谈:孕期饮酒或对婴儿有害（在线收听）

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 CAMPOS SALLES, Parent: 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, Parent: 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, Director of Programs, Minnesota Organization on Fetal Alcohol Syndrome: 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, Diagnosed with FASD: 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.

AMNA NAWAZ: 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, Diagnosed With FASD: 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, University of Minnesota Masonic Children's Hospital: 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, University of Minnesota: 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, Parent: 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.

朱蒂·伍德拉夫：但首先：怀孕期间饮酒存在危险。阿姆纳·纳瓦兹在明尼苏达州报道了受到胎儿酒精谱系障碍影响的家庭，所面临的挑战。这种影响持续一生。而且尚未找到治疗方法。关于这个主题，她做了两期节目，这是其中的第二期。

阿姆纳·纳瓦兹：戴·坎普·萨勒家在这方面做了很多事情。奥利维亚在厨房帮忙。塔莎训练这只家庭犬。而对这一切进行监督的是妈妈苏和妈妈乔，苏珊娜和她的妻子乔林。在塔莎18个月大的时候，他们从俄罗斯收养了她，自此她们组建家庭的梦想成真了。但回到明尼阿波利斯的家中，她们注意到了异常的行为。

苏珊娜·戴·坎普·萨勒，家长：她不能像其他孩子那样坐立。她曾经要穿一件加重背心。她的情感需求很多。她会哭几个小时。我不得不紧紧抱住她，摇晃哄她长约一个半小时到两个小时。她不会停止哭泣。

阿姆纳·纳瓦兹：早期，医生注意到塔莎多动，无法集中注意力，将她诊断为多动症。但治疗没有起到作用。后来经过多年和多次测试，9岁时，塔莎被诊断患有胎儿酒精谱系障碍或FASD。

约瑟琳·戴·坎普·萨勒，家长：这太吓人了。你知道，就像，那是什么，她的未来怎么办？你知道，未来20年会是什么样子？而且，从我们听到的情况来看，前景听起来非常暗淡。但是，一旦你抗住了那第一次的震惊，你需要的就只是深入挖掘，进入装备状态，然后应对。

阿姆纳·纳瓦兹：明尼苏达州胎儿酒精综合症组织的罗斯·里查森说，由于症状可能与其他疾病重叠，FASD常常被医生漏诊。

罗斯·里查森，明尼苏达州胎儿酒精综合症组织项目主任：那些真正携带我们所认为的无形残疾的孩子，他们没有任何残疾的身体表现，但是他们会有脑损伤，那些孩子正处于崩溃的高风险中。因为他们看起来很典型，人们期望他们具有典型性，但是他们会受到脑损伤。因此，这些孩子经常成为我们社会中的失败者。

阿姆纳·纳瓦兹：塔莎现年16岁。你还记得父母第一次告诉你关于FASD的事吗？

塔莎·戴·坎普·萨勒，被诊断为FASD：我想我就像9岁。而我就像，我并不真的在乎，因为，就像，我还年轻。我想，好吧。我就只把它想成多动症。但是当我年龄更小的时候，它并没有真正影响到我。当我上高中时，它对我的影响逐渐显现出来，因为那时我真的开始注意到了什么。

阿姆纳·纳瓦兹：比如，你注意到了什么？

塔莎·戴·坎普·萨勒：我注意到我更易生气，更易烦躁，更易冲动。就像，有一次是这样。我的一个朋友激我，让我跳出巴士的窗口，所以我做到了。

阿姆纳·纳瓦兹：跳出巴士窗口？

塔莎·戴·坎普·萨勒：是的。

阿姆纳·纳瓦兹：它在开动吗？

塔莎·戴·坎普·萨勒：不，它就停着。

阿姆纳·纳瓦兹：静止的。

塔莎·戴·坎普·萨勒：是的。

阿姆纳·纳瓦兹：你受伤了吗？

塔莎·戴·坎普·萨勒：我没有伤到自己，因为我是一名体操运动员和一切。所以，无论如何，我都会平稳着陆。

阿姆纳·纳瓦兹：奥利维亚，也是16岁，几年前加入这个家庭，当时她需要一个稳定的居住地。她小时候被诊断出患有双相情感障碍，但戴·坎普·萨勒知道她的生母在怀孕期间喝酒，而奥利维亚最终在2015年被诊断出患有FASD。

奥利维亚·戴·坎普·萨勒，被诊断为FASD：它从来没有真正出现，因为它不像你可以看到的东西，或者你可以在身体上感受到的东西。这只是你携带的东西，因为我看起来与其他人完全一样正常。

阿姆纳·纳瓦兹：因为医生们不知道在孕期摄入多少酒精才会导致FASD，所以官方指南上说，怀孕期间为了安全，不要饮酒。根据疾病预防控制中心的数据，美国约有十分之一的孕妇称自己怀孕期间至少饮用过一种酒精饮料。为什么？来自医生的综合信息显示，并非所有人都主张完全戒酒，而且媒体认为，一些研究相互矛盾，因此，据此造出的头条新闻也令人困惑。儿科医生朱迪思·埃克尔说，由于这其中涉及许多个人健康因素共同作用，最安全的医疗建议是避免在怀孕期间饮酒。

明尼苏达大学共济会儿童医院朱迪思·埃克尔医生：遗传、营养、年龄、肝功，你怀过几次孕，有很多不同的因素，我们实际上知道它们都会产生影响。我们只是不知道是什么样的因素组合或者究竟是什么让那个孩子患上了FASD或是什么不让那个孩子患病。

阿姆纳·纳瓦兹：山村靖国博士是高风险产科专家。她说，对于FASD来说，那种年轻且受教育程度较低的女性，其胎儿患病风险更高的假设，是错误的。最大的风险存在于那些受过大学教育，年龄在35岁以上的女性。很多女性会说并没有关于饮酒危害胎儿的确凿证据，那么如果我怀孕了，为什么要改变自己的行为呢？

山村靖国博士，明尼苏达大学：你知道，我认为缺乏确凿的证据并不一定意味着有证据表明没有伤害。所以，我认为，如果O.B.提供商给了她们适当的教育和建议，也就是最安全的做法是完全避免怀孕期间饮酒，许多女性会选择遵循这个建议。

阿姆纳·纳瓦兹：由于几年前当选官员对此具有兴趣，今天，明尼苏达州在FASD资源和研究的诸多方面，处于前沿。但是倡导者和医学专家说，即使是现在，他们最大的障碍就是意识。

鲁思·理查德森：这是一种残疾，它有很多耻辱，它让人们避而不谈。秘密和耻辱，这些都是让人们保持闭口的东西，也让人们无法得到他们需要的帮助。

卡罗尔·彼得森，家长：我感到很惭愧。我感到羞耻，就像你知道谁怀孕时会喝酒。

阿姆纳·纳瓦兹：卡罗尔·彼得森和她27岁的女儿凯乐恩以及她们的狗杰克爸爸，一起住在明尼苏达州北部，28年前，卡罗尔意外怀孕了。

卡罗尔·彼得森：我一直在说，这是，这不可能是对的。这不可能是真的，不是。然后我想到了我此前一直在喝酒。我每天都在喝酒。所以我很害怕。我不知道那会怎样。

阿姆纳·纳瓦兹：随着凯乐恩渐渐长大，卡罗尔说她纠结于医生说的，关于孩子发育迟缓和行为出现问题的事。

卡罗尔·彼得森：她会开始肆虐，愤怒，尖叫，试图抓住你，踢你，打你。

阿姆纳·纳瓦兹：几秒钟，几分钟？

卡罗尔·彼得森：哦，不，不。一闹就是好几个小时，好几个小时。

阿姆纳·纳瓦兹：凯乐恩被正式诊断为FASD用了六年时间。

卡罗尔·彼得森：他们把文件送回了家，我只是，我想，我会尽可能地学习这一点，尽我所能帮助她并让她恢复正常，尝试让她恢复正常，我就这样做了。

阿姆纳·纳瓦兹：为什么这对你如此重要？

卡罗尔·彼得森：我只是想让她过上最美好的生活。我感觉很糟糕，因为我从她那里夺走了一些东西。

阿姆纳·纳瓦兹：这些年后，她说她的家人仍然很难去谈论凯乐恩患有FASD这件事。她的女儿需要终生的支持。现在，卡罗尔是她唯一的照顾者。

卡罗尔·彼得森：有时，当她对我生气或开始崩溃时，她开始说，你为什么要在怀我的时候喝酒？你为什么要这么做？我生你气。但是，在大多数情况下，她知道我爱她。

阿姆纳·纳瓦兹：爱，卡罗尔说，她希望可以弥补过去的错误，并且她很乐意分享的故事，以便其他人不会重蹈覆辙。PBS《新闻一小时》，我是明尼苏达州北部的阿姆纳·纳瓦兹。

朱蒂·伍德拉夫：阿姆纳和我们的《新闻一小时》团队，在这个故事背后还有更多的故事，以及从中学到的关于酗酒影响胎儿的事情。您可以在PBS.org/NewsHour上进行在线阅读。