A new prenatal test, called MaterniT21 was made available to the public yesterday (in 20 cities across the U.S.), one that can detect Down syndrome early in a pregnancy with far less risk.
Odds are good that it will decrease the number of women who have amniocentesis or chronic villus sampling, the existing tests, both of which are more invasive. Odds are also good that there will be fewer babies born with Down syndrome, as women get earlier information more easily and decide to terminate their pregnancies.
This particular test is controversial for many reasons (you can read about that here and here) but what I want to talk about today is the philosophical underpinning of the tests.
Are children their illnesses? That is an ongoing question of parents whose children are diagnosed as having Down syndrome and autism spectrum disorders, and a host of other conditions that often define them to others. Decades of insistence by parents who know the power of language have made it clear to those who are paying attention, for instance, that there are no "autistic children" just "children with autism."
And yet, if you could somehow erase the condition, would you be left with the same child? And if you could avoid having a child with that condition, would you? Should everyone? Would there be something lost to the world if -- many would use the word "when" -- we can screen many in advance and reverse others after birth?
Temple Grandin, among the best known adults with autism in the country, has said that she would not accept a "cure" were one available. It comes up often when she is interviewed, most recently on the Brian Lehrer Show on NPR yesterday morning:
Amy Julia Becker's daughter Penny is a little girl with Down syndrome. Her mother writes about her often, on her blog, Thin Places, and most recently in her new book, A Good and Perfect Gift: Faith, Expectations, and a Little Girl Named Penny http://www.amazon.com/Good-Perfect-Gift-Expectations-Little/dp/0764209175/ref=pd_sim_b_1. A year ago, when she was pregnant with her third child, she wrote about her decision not to have any existing tests for Down syndrome, in spite -- or more accurately, because -- of the fact her daughter lived with the condition. Today she is here to write about the new tests, and her realization of how an extra chromosome does, and does not, define child.
So go on off to read what she has to say (as always, she says it beautifully.) Then use the comments to discuss a world in which some lifelong conditions are optional.
READ: Explaining Down Syndrome, To My Daughter, And Myself
Sara Winter: The Problem Wth Stuff
He was a 29 weeker that was in many respects lucky to survive. He has an above average intelligent, reads and absorbs more information than most. But his dam legs don't work so well
He has a great personality, stubborn, and very independent. How would he differ sans CP. If there were a "fix" he, me and his Mom would opt in.
Its not the same as Down or autism. But I've had a lot of contact with such children through my son's sports activities. I understand why some would say NO, to a fix for many of these. They are often smart (if not intelligent), functional if not social...but they have all had a positive impact on me and my family.
I saw some "judgement" replies criticizing those that might consider opting out. And as was stated, these people make an important contribution to families where they are loved, encouraged, and allowed to grow.
I wouldn't want to encourage parents to pursue having a handicapped child, but neither would I encourage selectively aborting them categorically.
It isn't the weakest link that determines the strength of a chain, its how you adapt surrounding it with stronger members.
>Made that up, but it makes sense to me;)
People have their rights though. I just hope that they will be accepting of others who do have the love in their hearts to raise a child with Down Syndrome.
I do not have a child with Down Syndrome but I would have happily (with some fear of course) born this special kind of child. I wanted a child. I was ready to accept my fate with whatever child was coming and no I am not a born-again Christian. I just wanted to be a mother.
Leo Toribio
Pittsburgh, PA
I also want to be clear about the sentiments of many parents with children that have disabilities. The children are ours. We love them very dearly, at least as much as every other parent loves their children. We worry about our children, in ways that parents of children without disabilities can only imagine. While we are blessed with a child who has relatively mild symptoms, we still worry about how to get him the appropriate educational support now, and how he will fare as an adult.
As far as screening during pregnancy is concerned, and resulting decisions or actions, I really am not prepared to make a comment on that, other than that I would not wish that on anyone.
Hindsight is a funny thing. I now have a beautiful, funny 7 year old son with FXS. I have contact with over 400 families with children with FXS. I know more about daily living with it than any geneticist or website. Now my answer is not only can I handle it, I love this life I would have rejected.
While I would make his life easier in any way possible, this comes down to a different question entirely. Would I not want *him*? If I had terminated my pregnancy, I wouldn't have *him*. I would have some other mix of genes, some other child and I would have missed out on so much for not knowing him.
I'm all for people having the info they need to make an informed decision but so few people seem to realize that you won't have all the *knowledge* you need to make a truly informed decision until it's too late.
Here's why: my husband has mild Aspergers. We didn't have a diagnosis when we were married, but I did notice some social/communication issues. He's kind, extremely intelligent man. A test would have shown that he has spectrum traits. Should he have never existed?
Our 1 1/2 year old daughter, while very neurotypical in most ways, shows low level spectrum traits. (Toe walking, obcession with patterns, etc.) She's probably a carrier of spectrum traits. Should she be encouraged to discard any future children she might have on the off chance they might end up with Aspergers?
Finally, I was the child of a teen mother. I have emotional issues due to trauma I experienced as an infant. You wouldn't know it if you met me, though. All I'm saying is, by some people's logic, neither my husband nor I should be here. Yet, here we are, productive members of society. Nobody is perfect, but some of us are able to fake it better than others to pass muster.