All We Saw Was Perfection
/The Boston Globe
The words are ugly in the 1952 Funk & Wagnalls Standard Encyclopedia. Trisomy 21, called Down syndrome now, was called mongolism then, and the description of the condition was graphic and cruel and wrong.
But that's the way it was. The smartest people scientists, doctors, writers of encyclopedias agreed that babies with Down syndrome weren't worth the effort it would take to teach them because, insisted the best and the brightest, they were not educable. "Put him in an institution. Forget you ever had him. It will be the best thing for you and your family," Marian Burke's doctor told her in 1965, when she gave birth to her son Chris, wh o would later star on the television series "Life Goes On.”
Walls were coming down everywhere in the United States. But not this wall. Babies with Down syndrome were almost always institutionalized when Marian Burke ignored her doctor's advice and took her son home.
Of course, doctors today would never suggest institutionalizing a baby with Down. Today's trend is to abort them.
Since screening became a routine part of prenatal care in the early 1990s, 80 to 90 percent of babies considered likely to be born with Down syndrome (the tests are not perfect) have been eliminated.
Now comes another screening test that women can have sooner in their pregnancy. Announced this month, a $15 million study funded by the National Institute of Child Health and Human Development, six years in the making, found a first trimester screening test to be a better indicator of Down syndrome than the standard second trimester test. (Imagine if this money and effort had been spent helping instead of identifying babies with Down.) The lead author of the study insists that this is "not a search and destroy mission.”
But experience suggests that's how the information will be used
"The Down dilemma: Is life with the syndrome worth living? A first trimester test raises the question earlier than ever," is a question Time magazine poses in its Nov. 21 issue. The Washington Post recently ran an essay by a 42-year-old woman who aborted her baby after she was told he had Down.
What is it about babies with Down syndrome that frightens people and that makes science want to eliminate them? When did having a child with Down become the worst thing?
My granddaughter Lucy has Down syndrome. We didn't know before she was born. Her mother declined the test. And we didn't know until 12 hours after she was born.
So all we saw when we looked at her was perfection.
And then a doctor said the words and how we saw her changed.
SHE didn't change. She was still perfection. We changed. We saw Down syndrome. Not our beautiful Lucy Rose.
Here's what we have learned since Lucy was born: That life is a challenge for everyone. But there's no prenatal test that tells most people what's to come, that forecasts that at age 1 a baby will contract cancer. Or that when he's 4, he'll be hit by a car. Or that she'll develop mental illness, or become a drug addict, or die in a fire when she's 25. You can't test for these things.
But if you could? What makes a person dispensable? Is being slow to walk and talk a reason for execution? Blindness? Deafness? A propensity for aggression? Homosexuality? Death at a young age?
What is so awful about an extra chromosome? Maybe it's fear of the unknown. Most people don't know anyone with Down syndrome. All they know is that there's a test that screens for it and there's the worried look on the doctor's face. And there's the hard reality of mental retardation.
In the United Kingdom they don't use this term. They say learning difficulty. It's inclusive, not exclusive.
We all have learning difficulties.
Lucy is 2 now and the only difference between her and other 2-year-olds is that she looks a little younger. She sits, stands, walks with a little help. She tells you how old she is: "Two!" And what a cow says: "Moo!" And whom she loves: “Mama!
She reads books and listens to music and watches "Mary Poppins" and plays with her cousin Adam, and likes going on rides, and walks to school, and church, and the library.
The latest scientific advances work against children like Lucy. All the polite words "peace of mind" and "informed choice" don't disguise this.
We used to institutionalize babies with Down syndrome. Now we kill them.
