Growing Recognition of Prevalence of Disorders Brought on by Prenatal Alcohol Exposure

Carl Bell, M.D., was staring down a mental health mystery. Since 1967, the eminent psychiatrist had been seeing a recurring problem among youth and young adults from impoverished urban areas in and around Chicago—patients with anger issues, poor social judgment, and prone to emotional outbursts.

Carl Bell, M.D.

It seemed so much like attention–deficit/hyperactivity disorder (ADHD) or autism, yet standard treatments for those illnesses did not help these troubled individuals, who routinely found themselves in juvenile facilities, special education, or child services.

However, during a visit to the province of Manitoba to assist with mental health prevention efforts there, Bell came across an article detailing the alarmingly high prevalence of fetal alcohol spectrum disorder (FASD) among Manitoban youth in juvenile detention facilities.

Returning to Chicago, Bell started learning more about the alcohol history of his patients and their families and discovered that fetal alcohol exposure was quite prevalent in his patients as well—around one-third of his patients, in fact.

“It all fell into place,” said Bell, a clinical professor of psychiatry and public health at the University of Illinois School of Medicine. “These patients had developmental defects brought on by fetal alcohol exposure.”

“I felt embarrassed for failing to track down that etiology sooner,” Bell continued. “I like to think I have a knack for seeing things others might miss.”

Bell decided that a more formal analysis was needed and recently conducted a study of 611 adult and child psychiatric patients who attended the Family Medicine Clinic at Jackson Park Hospital on Chicago’s South Side.

Bell’s study, published in Psychiatric Services in Advance on March 1, found that nearly 40 percent of the patients had clinical profiles consistent with a neurodevelopmental disorder associated with prenatal alcohol exposure. In comparison, only around 8 percent of the patients presented with the established DSM-5 neurodevelopmental disorders, such as intellectual disability, ADHD, or autism (Psychiatric News, April 3).

Around the same time Bell was carrying out his analysis, the DSM-5 work groups were working on the manual and included neurobehavioral disorder associated with prenatal alcohol exposure (ND-PAE) as an emerging condition warranting further study.

As Bell told Psychiatric News, “I was involved in DSM-5 planning as part of the personality disorders work group, but I had heard from colleagues that fetal alcohol syndrome was being discussed. It felt good to have some validation of my own work. When you get that kind of synergy and overlap, you know you’re on to something real.”

But while the inclusion of ND-PAE in DSM-5 is welcome news for the many psychiatrists like Susan Rich, M.D., M.P.H., who have been urging the recognition of this serious condition for decades, many say it is just a first step.

“Right now ND-PAE is confined to the back of the book, and we still have to classify it as an ‘other specified’ neurodevelopmental disorder,” said Rich, who specializes in FASD in children, adolescents, and adults.

“For this condition to be truly recognized, it deserves a designation and code at the front of DSM,” she told Psychiatric News. “This will not only help patients and families feel less stigma in knowing they have a recognized condition, but clinicians and care groups will be able to more accurately quantify this condition and develop better treatment protocols.”

Rich also is pushing for a nomenclature revision, because a designation of “neurobehavioral disorder” doesn’t reflect the whole range of symptoms for this serious condition. In addition to intellectual and social defects, ND-PAE encompasses other physical and neurological problems, including heart murmurs, facial abnormalities, and seizures.

Bell noted that because of this combined physical and psychological disability, many children with ND-PAE become frequent targets of abuse, which may trigger additional mental health and substance abuse problems.

ND-PAE is not just limited to poor communities, though. Rich, who has a practice in Potomac, Md., said the disorder can be found among the affluent as well.

“Nationwide, estimates suggest between 2 and 6 percent of people have some fetal alcohol–related disorder,” she said. “And with about half of pregnancies in the United States unplanned and epidemic rates of moderate or heavy alcohol use during reproductive years, we are not doing enough in any population to prevent the inevitable result of alcohol use and unprotected sex.”

ND-PAE is also tricky to treat, with many of the traditional medications for developmental disorders like ADHD generally failing to work well. Additionally, medications like stimulants could be potentially harmful for people with ND-PAE, given their increased risk of heart problems and seizures.

“That is why we need to swim upstream,” Rich said. “Prenatal alcohol exposure is the most common preventable cause of intellectual disabilities; we should focus on prevention.”

It will require difficult conversations about contraception and family planning, but with some creative thinking Rich believes all women can become more aware of the risks alcohol poses to their offspring—even if they drink only for a few weeks before they realize they are pregnant.

Advocates cannot do it by themselves, however. “The alcohol industry needs to take some responsibility as well,” Rich said. “Currently, I do not believe they are doing enough to warn people of the dangers.”

While Bell also thinks prevention is important, he is concerned that in areas like south Chicago, where liquor stores are a ubiquitous presence, behaviors can be tough to change.

Bell has proposed that researchers uncover a way to supplement the diets of people in these communities to reduce the damage of alcohol exposure, much as iodine and folate have been added to foods to protect against developmental disabilities.

One promising avenue involves choline, an essential nutrient similar to vitamin B that is highly concentrated in breast milk (yet is surprisingly deficient in prenatal vitamins and baby formulas). While choline has many physiological uses, it is heavily involved in brain development, particularly the hippocampus—the brain’s center for learning and memory.

The hippocampus is also a region that is adversely affected by alcohol during development, and research conducted in rats has shown that choline supplements given during pregnancy or infancy can lower the severity of fetal alcohol syndrome symptoms.

Jeffrey Wozniak, Ph.D., an associate professor of child and adolescent psychiatry at the University of Minnesota, has been exploring whether these findings translate to humans. A preliminary clinical study in children aged 2 to 5 who had prenatal alcohol exposure found that nine months of choline supplementation was safe and well tolerated (with the only negative effect being a fishy body odor).

While the effectiveness study is still being completed, Wozniak is optimistic on the basis of early results that choline can be a viable option to help young children diagnosed with fetal alcohol syndrome and is moving ahead in this area.

“This would not be a therapy that can directly fix what alcohol exposure damaged,” he said. “However, adding choline at this critical preschool age helps the hippocampus develop as optimally as possible, which could reduce a lifetime of learning and memory difficulties.”

In the meantime, Bell hopes that further population-based studies will uncover more national data related to the prevalence of ND-PAE, particularly in underserved populations.

But to make a true difference, the awareness of this disorder needs to extend beyond psychiatry, said Bell; obstetricians and gynecologists, neurologists, and pediatricians can all encounter families dealing with this issue and can play a part in screening, treating, and preventing this disorder.

Rich couldn’t agree more. “If we want to stop the ‘march of the penguins’ of these youth into juvenile detention centers and help them lead fulfilled lives, then everyone has to lend a hand.” ■