Having a Child with Down Syndrome Part VII: Decoding the Medical Arts

Copyright © 2009 Steve Hawley, All rights reserved.

I never took Latin. In theory, I had the opportunity when I was in high school, as there was still a single Latin class being taught, but due to an aggressive honors schedule, this was not possible. The teacher was also thought to be senile, so many people avoided it on those grounds. I did have a few language arts classes that put some stress on understanding roots of words, so you pick up a couple of good things now and again. What I know has come in really handy in doctor’s offices. Anatomy and physiology are some of the last bastions of heavy Latin use, so many diagnoses are given in those terms.

Alice entered the world with seizures due to a stroke. As is common in Trisomy 21, Alice has a heart defect. She has an atrial septal disorder (ASD), which is a hole between the two atria of her heart. If it’s minor, which it appears to be in her case, it is not a problem in the short term and the course of action is to do nothing. They think that the stroke was due to a blood clot that broke free from the placenta, went through her ASD, up her carotid artery, where it broke into three pieces and lodged in three different places in her brain.

These are all scary things, so let me tell you that it paid off to have had fairly solid biology classes. Dismantling a dead frog may seem to some to be an act of cruelty, but I needed that to understand what had happened so that Alice’s mom and I could make good choices. It also helps that Alice’s mom used to design surgical tools used for cardiac surgery. What a coincidence, huh? It gets better – so where did this clot come from? I have a clotting disorder (as yet undiagnosed), but when a pediatric hematologist starts talking to you about possible causes, it’s good to have on hand the full knowledge of what has been ruled out: Protein C? No. Atnithrombin III? No. Factor V? No. Protein S? Low, but not abnormally so. And so on and so forth. Pretty big coincidence, but no correlation yet.

Where it comes in handy is when doctors rattle off lists of issues and you can pick up their real meaning. Bilateral rhinorrhea. I can’t tell you how many times we have to deal with that one. Of course, bilateral rhinorrhea sounds much better than “dual snot rivers”.

What happens when your newborn has had a stroke is that even though I know all the things that aren’t the cause of my clotting issue, they wanted my records, so I called up my old doctor’s office 3,000 miles away and asked about getting them sent out. They said, “sure that’ll take about 6 weeks.” Want to know how to get them to deliver the same day? Tell them your daughter is the NICU. Wins every time.

So we’ve learned about cardiac surgery, tympanograms, done sleep studies, learned how orthotics are made and designed, how to build strength on her stroke affected side, and on and on. It’s all necessary to try to figure out what’s best in both the big and the little picture.

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