One of the reasons I had Will's story included in the "Gifts" book was to once again, try to let others hear my point. So many mothers like me go to great efforts to let other people know what the realities of DS are. Again and again they try to solicit the aid of various media forums, TV shows, television news stories, newspapers or magazines. We usually have to be happy with small articles here and there that are also sure to include the voice of the other side, the side that we are desperately tying to tell people is wrong, is out of date, is misinformed. Some days we are horrified to read front page columns about the new testing, about ways of identifying children like ours sooner and about preparing for a complicated delivery. I guess that sounds great to the average reader, but most times the articles don't include the fact that 90-93% of those positive tests result in an abortion. We mothers are aware and are saddened for the moms, who are frightened and unaware, for those babies, but mostly for our own children, who will grow up knowing that they are so unwanted by society. Even with all the things our kids have to give to us as moms, as families and as a community, they are deemed better off dead.
Today the Boston Globe ran an article about one point of view. It was clear and concise and was what I would love to say so precisely. It also promoted the new "Gifts", coming out in July.
I'm beginning to see what a good choice I made in having my voice included in "Gifts", how my voice is finally being heard. That is a satisfying feeling to say the least. It's titled "Lucy is learning, Are the doctors?" That is such a great title, and such a valuable piece if insight for any expectant mom...just how informed is your doctor about DS?
BEVERLY BECKHAM
Lucy is learning. Are the doctors?
February 4, 2007
When I brush my granddaughter Lucy's hair and put it in a ponytail, I always kiss the back of her neck. And she giggles. She is 3. She talks. She dances. She goes to school. She plays house and tea, and kick ball and follow the leader. She loves books and Bambi and church and playing with her cousin Adam.
Lucy has Down syndrome. She looks and acts more like a 2-year-old than a 3-year-old. But is this so awful? Don't we say, "Children grow up too fast"? Lucy isn't growing up too fast. She's taking her time.
She had heart surgery when she was two months old. It was awful, but she survived. And so did we. Hospitals are full of children with problems. Should they all be eliminated before they are born? Future screening tests may make this possible.
Imagine if doctors told every parent all the things that could happen to their child. He might get cancer at 1, or diabetes at 2. Or asthma; it's rampant, you know. Or encephalitis. Or meningitis. He could lose his sight, his hearing, his ability to walk, to talk. He could have an allergy and bite into a peanut butter sandwich and die at school one day.
Some women would choose not to have children.
For decades, doctors frightened women into believing that babies with Down syndrome were better off in institutions. They can't learn, they told women. They'll ruin your life. Pretend you never had him. And because doctors knew best, many women did.
Of course, now we know these doctors were wrong.
They continue to be wrong. Now they're identifying Down syndrome in the womb so that these children don't have to be born.
In December, the American College of Obstetricians and Gynecologists gave its imprimatur to a simple new test that screens for Down syndrome in the first trimester of pregnancy.
Down syndrome, also known as Trisomy 21, is a genetic condition in which an extra chromosome alters an individual's physical and mental development. Women 35 and older are routinely screened later in a pregnancy. But the screening has many false positives, so to be certain, women have amniocentesis. Some 85 percent abort when told that their baby has Down syndrome. That's how frightened pregnant women are.
The new screening is a blood test combined with an ultrasound, which measures the back of the fetal neck. Thickness there is a marker of Down syndrome. I kiss Lucy's neck and think of this.
Women abort babies with Down syndrome because they are afraid. They are afraid of mental retardation. They are afraid of stares and "We're sorrys." They're afraid their child won't go to a prom. They're afraid of everything. And too many medical professionals don't assuage that fear. They stoke it.
Most doctors are unduly negative when diagnosing Down syndrome. Two surveys of more than 1,000 mothers conducted by Dr. Brian Skotko of Children's Hospital and Boston Medical Center document this. One mother told how her genetic counselor "showed a really pitiful video first of people with Down syndrome who were very low tone and lethargic-looking and then proceeded to tell us [in 1999] that our child would never be able to read, write, or count change." Information that is not only negative, but wrong.
People fear what they don't know. And people, doctors included, don't know enough about Down syndrome.
A little known book, "Gifts," may change this. Subtitled "Mothers Reflect on How Children with Down Syndrome Enrich Their Lives," it is the work of 63 women who were afraid, too, before they brought their children home and loved them.
A collection of short essays, it could be called "If I knew then what I know now." It is affirming, honest, current, and, unfortunately, out of print. But Woodbine House in Bethesda, Md., is reissuing it in July, and every member of the American College of Obstetricians and Gynecologists should read it.
Because doctors need to learn what these women know. That children with Down syndrome are just children, full of life and curiosity and wonder. Some may have health problems, but the problems are treatable. They grow at a slower pace, and statistically may have shorter life spans , but so what? They're turtles, not hares. They're in the race with everyone else, but they go at their own pace.
And they will get to the finish line in their own good time -- if they are given the chance.
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