Since prenatal alcohol exposure is a concern that arises so frequently in our preadoption consultations, we created this article as a resource for families grappling with the alcohol issue. Our experience in this field comes from working at the FAS clinic at the University of Washington, evaluating and following many alcohol-exposed internationally adopted children, and volunteering with older orphanage-raised children in Moscow.

Unfortunately, a recent study found that 60% of pregnant women in Russia reported drinking during pregnancy, with 8% reporting at least one binge drinking episode during pregnancy. Since these were women that were actually receiving prenatal care, the rates and amounts of prenatal alcohol exposures for children in orphanages are likely to be significantly higher, as those pregnancies do not tend to be supervised. The rate of FAS in Russian orphanages have been estimated at 1-10 per 100, and the rate of alcohol-affected kids is even worse. That’s a lot higher than in this country, where it’s thought to be 1-3 per 1000. Alcohol is also a major concern in other former Soviet Union countries, and is an emerging issue in many other countries.

So … what is fetal alcohol syndrome?

FAS is a permanent birth defect syndrome caused by maternal alcohol consumption during pregnancy. The full FAS diagnosis requires all of the following: growth problems before or after birth, a pattern of minor facial anomalies, evidence of altered brain structure or function, and prenatal alcohol exposure. There is an associated increased risk of eye, hearing, heart, and other associated defects, but those aren’t part of the diagnostic criteria.

What about PFAS, AFAS, FAE, ARBD, ARND, etc etc etc? Partial FAS, atypical FAS, fetal alcohol effect, alcohol-related birth defects, alcohol-related neuro-developmental disorder, and other names have been used to describe children that seem to be affected by prenatal alcohol exposure but are missing one or more of the four FAS criteria. An emerging term is fetal alcohol spectrum disorders (FASD), including children with FAS as the “tip of the iceberg”, but also alcohol-affected children with fewer or less severe features of FAS.

We know that alcohol can damage the developing fetus, but the effects of alcohol are quite unpredictable – we’ve seen fraternal twins where, given the same mother and alcohol exposure, one has FAS and the other seems fine. There seem to be unidentified protective and risk factors for mom and babies that make predicting the effects of alcohol exposure very hard to do. No amount of alcohol exposure has been proven to be safe, but heavy and repeated binge drinking is highest risk. We also worry more about older moms and later pregnancies, because they seem to produce kids more affected by alcohol, perhaps because alcoholism is further along in those pregnancies. Involuntary termination of parental rights can also be a clue to social dysfunction and alcohol abuse.

Growth

Let’s look at those 4 FAS criteria, starting with growth. This is probably the least important, and a lot of us in the field would like to see it dropped from the “must-have” criteria. FAS was first described in children from a growth failure clinic, so of course they were all small at birth or thereafter. But in the FAS clinic where I work, we’ve seen plenty of children that we believe have FAS that don’t have growth failure. In the international adoptee population we see lots of growth failure that’s more likely to be due to institutional deprivation anyway, which makes growth even less of a reliable FAS measure for our kids.

Facial Features of FAS

What about the facial features? An overly long list of features associated with FAS has piled up over the years, but there are only three features that really count – a thin upper lip, a smooth or absent philtrum (vertical groove between the nose and lip), and small eyes. The face of FAS requires all three of these to be abnormal, and the diagnosis of full-blown FAS requires the face. Unfortunately, since that face seems to get “created” on only 2-3 days in early pregnancy, there are moms who drink heavily whose kids can be quite alcohol-affected but don’t have the face of FAS. Not having “the face” does not rule out alcohol exposure and effects. But having “the face” dramatically increases your risk for FAS and its associated disabilities.

The other things you’ll hear about - big cupped ears, “clown eyebrows”, wide-spaced eyes, epicanthal folds (“asian” eye appearance), flat nasal bridge, short upturned nose, flat midface, small chin, etc - are not necessarily caused by alcohol exposure. They can be developmental (most babies have short upturned noses), ethnic, or just minor anomalies unrelated to alcohol. We do see them more often in alcohol-affected children but the thin lip, smooth philtrum, and small eyes combination is much more reliable and specific for alcohol damage.

We can often get a decent look at the lip and philtrum from referral photos and videos. That’s two of the three features, and if both are abnormal then we get concerned. If you have a thin lip and smooth philtrum, plus microcephaly (small head), and strong suspicion of alcohol exposure then I’m usually quite worried about damage from alcohol. We do have software that is able to analyze facial features more accurately, but it requires a specialized "sticker" photograph.

How Alcohol Affects Brain Structure and Function

Enough about the face … what about the brain? That’s what we really care about, after all. In fact, young kids with the face of FAS can be really cute. We can look at the brain structurally by plotting the head circumferences on a growth chart. You should measure the head circumference yourself if there has been any concern – bring a non-stretchable measuring tape, and practice a bit first. Wrap the tape snugly around the widest possible circumference - from the most prominent part of the forehead (often 1-2 fingers above the eyebrow) around to the widest part of the back of the head. Remeasure it 3 times, and take the largest number.

Microcephaly (head circumference less than 3%, or “below the growth chart”) can be evidence of brain damage from alcohol. It’s one of the few things we have to predict later brain function in infants and young toddlers, because meeting early motor milestones does not rule out difficulties later on with learning and behavior. In fact, a lot of the functional disabilities from alcohol damage aren’t apparent before school-age. The lack of concrete predictions about alcohol effects is a constant frustration in this process ... it really is a "time will tell" issue, unfortunately.

“Typical” (in quotes because the outcomes are so variable) functional impacts of prenatal alcohol exposure include problems with inattention and impulsivity (ADHD-like behaviors, sometimes not as responsive to medications), lower IQ scores or mental retardation, math and other specific learning impairments, “executive function” difficulties (the higher-order brain functions that plan and organize how you solve problems), trouble with cause/effect, social and communication challenges, coordination problems, sleep difficulties, and so on. Alcohol commonly affects multiple domains of brain functioning. Teasing this out can require wide-ranging testing by professionals familiar with alcohol effects. Many kids aren’t identified early enough, and are labeled as “difficult”, or “just doesn’t get it”, or other labels that don’t help. Accurate diagnosis as early as possible helps children impacted by alcohol.

Raising Children Affected by Alcohol

While these difficulties are usually lifelong, this is not a hopeless diagnosis. Consistent, patient, loving, “industrial-strength” parenting with tons of structure, and appropriate expectations and supports in school can really help kids affected by alcohol reach their full potential. That potential may be limited by alcohol-related brain damage but setting the bar at the right height, and identifying what they CAN’T versus WON’T do can really help them have success in their life, and hopefully prevent some of the “secondary disabilities” of depression, acting out and aggression, victimization, troubles with the law, and especially their own substance abuse potential.

Additional Resources

We have an FASD Resource List with internet and book references that will help give you a better sense of the range of alcohol effects, and what it’s like to parent a child affected by alcohol. A wonderful parenting resource is available for free download that has a lot of great ideas on how to manage various behavioral and cognitive challenges. Also highly recommended is a downloadable guide for teachers and caregivers of child with FASD. Our website also has a collection of helpful FAS links.