November 11, 2005 2:57 PM
New test for Down syndrome - good news or bad?
Down Syndrome Now Detectable In 1st Trimester
Earlier Diagnosis Allows More Time for Decisions
Washington Post, Thursday, November 10, 2005
While this may be hailed as good news on the first page of the Post, I must admit I'm a little sad to see it. In a better world, everyone would know that people with Down syndrome have a unique contribution to make and that their elimination leaves the landscape a little less than it might have been had we welcomed them.
It's fear that drives the quest for the perfect test - resulting more often than not in an aborted baby - and the continuing drive for an earlier test. Now it can be administered en masse to eliminate those troublesome babies with Down syndrome who have slipped by to be born to younger mothers.
The ultimate irony is that in our lifetimes there has been so much enlightenment concerning Down syndrome - so that instead of locking these children away in institutions, we now raise them at home to love and be loved by their families, their neighbors and their communities. They are included in classrooms with their peers. They hold jobs in the community - and study after study reveals that where they are on the job, employee morale is given a big boost.
They are even homecoming kings and queens:
Lauren Welsh: Queen of the Class
Queen for Life: Jones Named Homecoming Queen
Homecoming king's election 'came from the kids' hearts'
A Wish Upon A Star Comes True In Bismarck
Triton Homecoming Queen Breaks Down Barriers, Wins the Hearts of Classmates
The King and I (If you only have time to read one, this one is guaranteed to make you cry)
These are just a few I pulled out of the top 10 of two Google searches: for Down syndrome homecoming queen and Down syndrome homecoming king. I mentioned above that Lauren Welsh is from our local high school. In the last place I lived, Petaluma, California, a young man with Down syndrome was homecoming king at Adobe High School.
How could these people who our society so fears that it spends vast amounts of money researching and testing to eliminate end up being number one in the hearts of their classmates?
My simple answer is this: because that's what they're all about. God is in the business of changing hearts, and a sprinkling of people with Down syndrome among us is one way he uses. If you have a family member or classmate or friend with Down syndrome, then God's been doubly good to you. But you probably already know that!
My eight "normal" kids are no angels (as anyone who knows us would tell you!), but people consistently remark on their kindness. Certainly, I can't take all the credit. Mostly, they are kind because they were part of the family team that's been raising four brothers with Down syndrome (one by birth, three by adoption). Each of us is different because of their presence in our lives.
What would happen in a world where Down syndrome was eliminated - so that parents could have "perfect" children who may grow up to be the furthest thing from perfect after all? The world would surely be a little less risky, a little more controlled. And a little less bright.
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You might also want to read About That Extra Chromosome and use my personal google on the left sidebar to search for more entries about Down syndrome.
Posted in Babies, Disabilities, Down syndrome, Family, Pro-Life Issues | Permalink
Comments
Having just read your previous few posts today, I almost left a comment asking your opinion on the new testing, and then you wrote this! Well said.
Posted by: Carol | November 11, 2005 4:12 PM
It's just sad.
Posted by: Julana | November 11, 2005 8:27 PM
I am so disappointed by what the medical world deems as a technological breakthrough. Is this really improving the quality of life (NO)? This is only providing woman with more reasons to consider terminating a life simply because he or she does not meet the standards or ideals of the parents or societies desire to strive for something perceived as flawless.
I believe that a woman who is not assertive enough or sure enough that she could parent a child with DS could be pursued by her doctor or others to terminate simply because the technology to diagnosis is so much earlier.
Posted by: Rebecca P. | November 11, 2005 9:44 PM
Hi Barbara - When I had my last baby 15 months ago, I was so saddened by the barrage of new tests available to me. Now we are offered the chance to eliminate not only Downs babies, but children with CF as well. What will the next tests be able to detect so we can "get rid of them?" Every ailment imagineable, I would think, because we don't want to create "less than a perfect human being."
I can't see that this new test is a good thing.
Posted by: Holly | November 11, 2005 10:41 PM
My first baby had Triploid Syndrome- a complete set of extra chromosomes. She lived in me for 20 weeks and 5 days. Needless to say, with this being my first experience with pregnancy, I struggled when I became pregnant with my son. I had the First Trimester Screen done. Because I had a history of a baby with a "chromosomal abnormality", in this case, 69xxy, and because the carrying of that baby put my life at risk, I wanted to know if my new baby had any of the markers of Triploid Syndrome. Thankfully, he didn't. I knew in my heart he wouldn't, but it was GREAT to have the reassurance.
I understand what you mean though Barbara. I feel absolutely sick when I think of mother's aborting their children because of Down's. For that reason, I think this test should only be used in special circumstances like mine. It wouldn't have made a difference if our son had Down's or Trisomy 18 or anything like that, but it was nice to have that reassurance that, in all likelihood, what happened to our first child wasn't happening again with our second child.
So I guess what I'm trying to say is that I think there are positives and negatives to the First Trimester screen. Sorry for being so inarticulate. I have a hard time being concise when it comes to discussing my first baby...
Posted by: Jennifer | November 11, 2005 10:46 PM
Barbara ~ Thank you for this excellent article. I am one of the minority of women who had a prenatal diagnosis of Down syndrome but never once considered terminating my baby. My ob/gyn insisted that I consult with a geneticist due to my advanced maternal age. During my ultrasound with the geneticist, she discovered that my baby had a couple of soft markers for Ds. Knowing that I would never abort my child, I declined the amnio. As soon as I got into my car, I had an overwhelming feeling that I needed to go ahead and have an amnio. I called the office as soon as I got home and rescheduled the amnio.
Personally, I felt knowing that Sarah had Ds and a heart defect well before she was born was a blessing. I think wondering for five months would have been more stress than I could handle. As it turned out, by the time she was born, there were only tears of happiness. We were overwhelmed with joy when our daughter was born.
I have mixed feelings about prenatal testing since in my case it was a blessing. Unfortunately and tragically, most women use it as a way to get rid of thier imperfect child. I wish the world could know what joy and happiness our child has brought to our family and to so many others.
Chris
Posted by: Chris | November 12, 2005 7:42 PM
I'm also one of those folks who had a prenatal diagnosis and chose to keep my son. I let it be known to reinforce the fact that these children are not discardable or avoidable mistakes. Whenever I hear about prenatal screening for chromosomal abnormalitites I can't help but wonder why they don't try and come up with tests to screen for rudeness, greed, thoughtlessness, propensities to start wars, cruelty and dishonesty. Those are the traits we need to eliminate from our society!
Posted by: Kathy | November 13, 2005 2:52 PM
I also declined an amnio and chose to keep my baby, knowing that she had a couple soft markers for DS. What saddens me about this new technology is that with the fewer births of babies with Down syndrome, comes the decreased services for those with it. There will be less inclusion and mainstreaming because there will be fewer children who are less than perfect. There will be less awareness. To me this new test is contributing to the corruption of the modern world as we know it.
Why they didn't take those dollars that sunk into the research for this test and put them into treatments and Down syndrome awareness is beyond me. It shows that technology is much more important in this country than any kind of social issues.
Posted by: Jeanne | November 30, 2005 11:37 AM
I had my Down Syndrome son when I was 16 and now he's about that age and he's awesome and my pregnancy after him was a little girl that had Triploid Syndrome but she passed a few months before due and I was 17 at that time.
Posted by: Stephanie Weddle | October 16, 2007 4:24 PM
I would happily have a test, but to prepare me for a child that might be more difficult to care for than a 'normal' child. I am in favour of testing, because it gives you that chance, but I know I could never have an abortion, so that reason for the test wouldn't really cross my mind...
Posted by: Emy | May 28, 2008 3:03 AM
