Excerpted from our Fetal Alcohol Spectrum Issues topic ...
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 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. 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!