Articles on adoption, foster care, & pediatrics

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Fetal Alcohol Spectrum Issues

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

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Unfortunately, a 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, ND-PAE etc etc etc? Partial FAS, atypical FAS, fetal alcohol effect, alcohol-related birth defects, alcohol-related neurodevelopmental 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. We use the umbrella term fetal alcohol spectrum disorders (FASD) to describe the range of fetal alcohol diagnoses. FASD includes 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 mom 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. Children affected by prenatal alcohol exposure can be unusually small in weight and/or height, at birth or later. Many show some catch-up in growth by adolescence. Of course, many other adverse influences common to adopted children (maternal stress or illness during pregnancy, prenatal tobacco, malnutrition, neglect, orphanage factors) can impact growth as well. We count growth deficiency towards an FASD diagnosis if the growth is not better explained by other factors, and look at the catch-up growth pattern in the first year home to help us tease out environmental versus prenatal causes. Children who are unusually small compared to others raised in similar environments are at higher risk for developmental and behavioral challenges after adoption.

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 gets “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 kids but the thin lip, smooth philtrum, and small eyes combination is 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. If we've been relatively happy with the lip and philtrum but have asked to see some trip photos, you might be able to skip the sticker part, but the following photo tips will still be helpful.

FAS Facial Photographic Analysis

In more borderline situations we might need eye measurements. The size of the eyes (measured from the inside to the outside of the visible part of each eye) can only be accurately measured with a specialized photograph, one that you can take on your trip and email to us for computer analysis. Here’s how to take that photo …

The key here is an internal measure of scale – you’ll need a small round sticker 1/2 to 3/4 inches in size, which you can get from an office supply store. Homemade stickers or pieces of tape are not helpful, as they are of variable width. Mark the width in magic marker on the sticker - this is important, as we must know the width of the sticker. Place it on the child’s forehead between the eyebrows … yes, they will look at you funny in the orphanage when you do this, and you want to be sensitive to staff and older children’s feelings. Put some stickers on your own face if you want to goof off, give out extra stickers, and if you can, print/send/bring a nicer smiling photo to the child as a memento. Again, we only need the sticker if the lip or philtrum is worrisome.

Use a digital or 35mm camera – polaroids aren’t good enough. Take a closeup facial portrait photograph so that the head fills the entire frame (but watch the focus). When looking at the face in the viewfinder you should be able to draw an imaginary line from the ear canals through the bony ridge below each eye (lower orbital rim). That makes sure the child isn’t looking up or down. There also should be no left-to-right rotation – make sure both ears are equally visible.

The facial expression is important – smiles or frowns can really distort the features and make a nice thick upper lip and deep philtrum disappear. No smiling! We need a relaxed facial expression with lips gently closed, eyes wide open, and no eyeglasses. For older children, ask them to look at your nose, and breathe through their nose - this often relaxes their expression.

Asking the child to look up with their eyes (“what’s on the ceiling?”) without tilting their head up will help the eyes be wide open; for younger children ask someone to wave something just above your head. It may well be that one photo gives a good look at lip and philtrum, and another one gives us eyes wide open, so keep trying. Please review your photos on the camera screen before packing up, as we get a lot of out-of-focus or otherwise less than useful photos.

A “3/4 view” halfway between frontal and side view is also helpful, especially if you have a centrally mounted flash that can wash out the philtrum in frontal photos. A profile view may also help. One last tip is to use your digital camera’s “video clip” function to capture a brief, very upclose view of the face as it moves through different angles – we can pull frames from this video clip that may capture the true lip/philtrum better than a still photo. If you want more information about the photographic analysis, visit our FAS clinic's website. You can also print out instructions for taking screening "sticker" photos for FAS, and view a video animation of proper camera alignment.

Sounds complicated ... but we do this routinely in our clinic, and have a lot of success even with older infants and toddlers. We've found that parents really are able to do this themselves, especially if they practice a bit in the hotel room. Have fun, and good luck!

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, a lot of young kids with the FAS face are 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 these children.

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 will 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.

Resources for Caregivers

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 FASD parenting resource is available for free download that has a lot of great ideas on how to manage various behavioral and cognitive challenges. FASD - Strategies Not Solutions is another helpful guide for caregivers.

Resources for Educators

Here are 3 free, downloadable PDF guides for educators (also very useful for parents, who often have a lot of advocacy to do at school):

Teachers can find more practical strategies in the do2learn Teacher Toolbox.