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Synopsis: Fetal alcohol spectrum disorder is the largest preventable cause of developmental disabilities in the US, and studies show it is far more common than previously suspected, especially in certain populations. Experts explain how better prevention efforts could greatly reduce a wide variety of social problems.
Dr. Phillip May, Research Professor of Nutrition, Gillings School of Global Public Health and the Nutrition Research Institute, University of North Carolina-Chapel Hill at the NC Research Campus.
Dr. Carl Bell, Professor of Psychiatry Emeritus, University of Illinois and staff psychiatrist, Jackson Park Hospital, Chicago
Dr. Ira Chasnoff, President, NTI Upstream and Clinical Professor of Pediatrics, University of Illinois
16-36 Fetal Alcohol Spectrum Disorder
Reed Pence: About 10 percent of women drink during pregnancy, according to official government estimates. But some experts say the actual number could be two or even three times higher. They’re at risk of delivering a child with fetal alcohol spectrum disorder or FASD… the largest preventable cause of developmental disabilities in the United States. Experts like Dr. Phillip May, research professor of nutrition at the Gillings School of Global Public Health and the Nutrition Research Institute, University of North Carolina-Chapel Hill, have typically believed that about one percent of the population suffer from it.
May: Children with fetal alcohol spectrum disorders suffer from generally depressed verbal and non-verbal IQ scores. They tend to have problems with certain areas of what we call executive functioning, and that is inattention, ability to use their memory, working memory, particularly to solve tasks. They often are inattentive; those sorts of things.
Dr. Carl Bell: Affect disregulation, which causes an explosive temper, inability to learn, poor judgment, a history of special education.
Pence: Dr. Carl Bell is professor of psychiatry emeritus at the University of Illinois and a staff psychiatrist at Jackson Park Hospital in Chicago.
Bell: Poor attention span looks like she has ADHD, but it’s really not ADHD, has poor memory, extraordinarily poor memory, poor directional skills, receptive language problems. So that you ask a simple question and the response is, “What?”
Pence: However, new studies are beginning to show that the incidence of fetal alcohol spectrum disorder is much higher than anyone has ever suspected. For example, May’s study of a group of average youngsters in a typical midwestern city.
May: When we took the experts to the children and did a full screening of all consented first grade children in this particular midwestern city, that 2.4 to 4.8 percent of all the children had one form or another of fetal alcohol spectrum disorders. That is that they were children who had trouble performing. They weren’t probably at the top of their class and they did have some behavioral problems, some of which were disruptive.
Pence: Meanwhile Dr. Ira Chasnoff, president of NTI Upstream and clinical professor of pediatrics at the University of Illinois, carefully tested some 3,000 children who’d had behavioral issues in foster care or adoption. He found that nearly 30 percent of them had FASD.
Dr. Ira Chasnoff: Of the children that we later diagnosed with fetal alcohol spectrum disorders, 85 percent of them had been diagnosed with something else. So we saw a misdiagnosis rate of about 85 percent. The most common diagnosis many of these children are labeled with is ADHD, attention deficit hyperactivity disorder. And in fact, many of them do meet criteria for ADHD, but the problem is that the treatment of children who have been exposed to alcohol and have ADHD, the treatment approach is different than that for children who have ADHD and were not exposed to alcohol.
Pence: But what happens when these children grow up and become adults with fetal alcohol symptoms? Bell believes that FASD may explain a whole host of public health and social problems. He set out to interview about 600 of his patients in the inner city.
Bell: I would get these histories of victimization and perpetration of violence and school failure and special ed, unemployment and homelessness.
Pence: Then Bell did a formal study of those patients and found that nearly 40 percent of them had fetal alcohol spectrum disorder.
Bell: Well it broke my heart, because this is a potentially preventable disorder, although it’s difficult. And if you think for just a minute, if you’ve ever been in a low income African American community, there are liquor stores all over the place. And what happens is that young women, sometimes middle age women, don’t know they are pregnant, takes them months to six weeks before a woman realizes she’s pregnant, and she may be engaging in social drinking. Then typically what I’ve learned is that when they find out they are pregnant, they stop drinking, because they don’t want to harm the baby. Everybody kind of knows you’re not supposed to drink when you’re pregnant. And if you ask them, were you drinking when you were pregnant? They say no, not counting that four to six weeks before they knew they were pregnant. And of course the child is born with fetal alcohol exposure.
Chasnoff: The damage alcohol can do to the developing fetal brain can occur as early as 20 days after conception, which is long before most women ever realize they are pregnant. So the best advice is if you’re having unprotected sex, you really shouldn’t be drinking.
Pence: May found that in his study of first graders, women who didn’t learn they were pregnant until later on were at a higher risk of delivering a child with FASD.
May: We found that the children born with fetal alcohol spectrum disorders in this midwestern community had mothers who sought prenatal care at a much later stage, and/or did not report that they recognized that they might be pregnant until ninth or tenth week.
Pence: Still, many experts believe that as much as 30 percent of women continue to drink in pregnancy. Chasnoff says they may believe that as long as they don’t binge, it’s okay.
May: Binge drinking is far and away the most risky pattern, but we, and a lot of our research shows that a binge of three drinks over a three-hour period can cause substantial damage.
Pence: Children are also not necessarily home free at birth. Obviously, brain development continues in infancy. May has done one of the few studies on the effects of drinking during breastfeeding.
May: Between one half to 3.3 percent of the alcohol in the mother’s system will be passed on via the breast milk to the child. Our study with this large cohort showed that in fact 2.5 percent of the damage measured by both the physical and cognitive behavioral measures could be attributed to, statistically to, drinking during the period of the breast feeding. In other words, a woman who is drinking during the period of breastfeeding is 6.4 times more likely to have a child diagnosed with fetal alcohol spectrum disorders than one who is an abstainer during that breast feeling period.
Pence: Today we also know through epigenetics that the environment can affect genes, and that means that even men’s drinking may have a role in the risk of FASD in their children. May says a male may contribute risk genes that are turned on by heavy drinking, while those from a teetotalling male may be turned off. All of this means that fetal alcohol effects can come through many means… and add up to a bigger problem than anybody thought. But once it’s on our radar, at least we can do something about it.
Chasnoff: When I’m working with pediatricians and other physicians, the important message is that if you see a child with behavioral health problems, attention problems, difficulty at school, suspended or expelled from school, failing school work, behaviors that the parents aren’t able to manage, if you see a child like that, then you have to put fetal alcohol spectrum disorders into the differential diagnosis, at least think about it so that you can further asses the child if necessary.
May: Particularly those children who are performing poorly in first grade along these lines, that is, the special ed teachers and the regular teachers should try to get these children to cognitive and behavioral testing. But even more importantly, to a knowledgeable pediatrician trained in medical genetics and dismorphology, and early diagnosis could follow, because children with fetal alcohol spectrum disorders can benefit from certain cognitive and behavioral interventions and nutritional therapy and a number of other innovations that could be provided to them, then many can develop quite normally.
Pence: One of those nutritional interventions, according to Bell, could be a nutritional supplement called choline. He describes a study on children age two to five who had been diagnosed with FASD.
Bell: He gave them 500 milligrams of choline twice a day. It’s over the counter supplement, and they got a little better. When they got a little better, their math skills got a little better. They got a little better. So there’s some promise for that intervention. Turns out that alcohol denatures choline in a pregnant woman, and choline is the essential element for brain growth and brain development. And so if you’re drinking unknowingly that first four to six weeks when you’re pregnant, that alcohol destroys choline, which of course is found in yolk sacs, which all vertebrates have. And if you don’t get the choline your brain doesn’t develop well. So that’s looking like it might turn out to help, although it won’t make people perfect.
Pence: Bell says virtually no one in the United States gets enough choline. It’s not in prenatal vitamins. But he says animal studies and at least one study in humans show that choline given during pregnancy might even prevent fetal alcohol affects.
Bell: That science is still very young in its development. Scientists like to be very careful about things like that. I of course, if you’re seeing 40 percent or four out of ten people that have this problem, I have not waited for the science to be perfect.
Pence: Fetal alcohol spectrum disorders have a profound effect on a person’s ability to learn, make decisions, relate cause and effect, and avoid angry explosions. Prisons and homeless shelters are full of adults who were never diagnosed or treated. So Bell says doing something about fetal alcohol spectrum disorders could have an enormous effect on a wide range of social problems.
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