Is prenatal testing for Down syndrome always a good thing?
Submitted by ohboys
I recently went to a ceremony at
my son's middle school where he
(along with 100 or so other kids)
earned an award for "top effort and citizenship." When they called his name, he literally strutted to the front of the auditorium and gave high-fives to the line of teachers waiting there for him. The crowd roared, the teachers grinned and Aidan floated back to his seat.
Big deal, a middle-school ceremony, right? Well, Aidan has Down syndrome
, and nights like that bring home to me a few things: 1) that Aidan can do so much more than people give him credit for; 2) that kids with Down syndrome are more like other kids than they are different; and 3) that this kid has taught me two lifetimes-worth of lessons in the 12 short years he's been on this earth.
So I get worried (and sad) when I read the stories about all the new, better, safer and earlier prenatal tests
offered to pregnant moms, because to me, that means 20 years from now, people with Down syndrome may be a rare sight.
Two companies in California are getting ready to try out new prenatal tests that are totally noninvasive (amniocentesis
and chorionic villus sampling
[CVS] are currently the only definitive prenatal tests to detect chromosomal abnormalities, and both carry a risk of miscarriage), and can bring results as early as five weeks.
Sounds like good news, I suppose, but I see the darker implications: 90 percent of fetuses that are prenatally diagnosed with Down syndrome are aborted. With safer testing available, it's possible more women will test. And more will abort. And nights like the one at Aidan's middle school may not happen anymore.
The prenatal tests aren't the problem, of course. Lots of women want to know early if their baby will have a disability so they can prepare themselves (physically and emotionally). But the ease and timing of the tests, combined with the bad information that doctors hand out, could mean the end of people with disabilities.
The prognosis for people with Down syndrome is actually light-years from what it was even 20 years ago. Kids with Down syndrome these days are going to school (some to college), getting married
and working. People with Down syndrome are artists
, poets, musicians
and actors, to mention just a few. They're living full lives, lives full of promise.
But when doctors deliver the news to parents-to-be, they often portray Down syndrome as some horrid disability that leaves kids drooling in a corner. I know so many women whose doctors urged them to have an abortion when their baby was diagnosed.
It's impossible to hold back science in its quest to find the easiest, earliest and cheapest test. But I hope that an equal amount of attention will be paid to the importance of people with disabilities in our lives.
I can say unequivocally that having Aidan has been the seminal event in my life. And I've never met the parent of a child with a disability who didn't say the same. I'm not saying it's all milk and honey (that stereotype of kids with Down syndrome being angels? Don't believe it!), but neither is raising a typical child. Aidan has added a texture and grace to my life that I didn't even know I was missing. How bland our world would be if we were to wipe out the people who add such layers—and nuance and joy.