They Won’t Live Past 21

These words still echo twenty years after I heard them in a first year medical school lecture on congenital genetic disorders.

At the time, patients with Down’s Syndrome (Trisomy 21) were not expected to live far into adulthood. While we needed to learn how to treat them as children and teens, we paid no attention to their possible lives as adults.

Experience has taught me otherwise. I have cared for teenagers and young adults with Down’s Syndrome, completed many medical clearance forms for Special Olympics, and discussed how elderly parents should plan for their children’s continued care after they die.  I have delivered children with Down’s when the prenatal testing said the risk was normal.  I remember the chill we felt when my wife’s 16 week ultrasound showed cysts in our daughter’s brain that suggested Trisomy 18, a lethal genetic defect. As we drove to the amniocentesis appointment, we wondered what we would do if the answer was  yes.  She turned eleven recently.  Thankfully, the answer was no.

As the youngest of eight, the odds were not in my aunt’s favor.  The prenatal testing we have today did not exist in the 1960’s.

She turned fifty last week.

I’m glad you proved them wrong.

Happy Birthday

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