October 15, 2008 6:32 PM
Five-week test for Down syndrome
A jouranlist contacted me today to ask how I felt about the new test for Trisomy 21/Down syndrome, which detects the condition at five weeks gestation.
My off-the-cuff five minute reply:
Dear Jennifer -As the mother of four wonderful sons with Down syndrome - 1 by birth and 3 by adoption - all I can say is that I find the relentless efforts to detect and exterminate babies with Down syndrome very sad - even as for years I have seen people's growing greed and materialism sad.
Our efforts to create a "perfect" world for ourselves and to guarantee "perfect" children eliminate many beautiful lessons on what it means to be human that parents of children with Down syndrome have discovered - most often accidentally.
Time after time, I have heard parents echo thoughts I have said myself: My son Jonny was a gift I never expected, bringing lessons I never knew I needed to learn. While at first I thought his addition to our family was all about helping him reach his potential, the past 16 years have taught me it's really been about him helping us reach ours.
Jonny, Jesse, Daniel and Justin have 8 siblings, 2 brothers-in-law, 1 sister-in-law, and 12 nieces and nephews, all of whom would be the first to tell you that their own quality of life is better because they have people with Down syndrome in their lives.
So would their classmates and teachers.
Our society skews that outcome by instilling fear into potential parents, who don't know the benefits of not aborting their babies.
btw, one of my adopted children would have been aborted if we hadn't adopted him. Somehow I feel like the world would be a little less if he weren't in it.
And I'm hearing Elton John's song running through my mind:
I hope you don't mind
I hope you don't mind
That I'm putting down in words
How wonderful life is while you're in the world.
See also
New test for Down syndrome: good news or bad?
About that extra chromosone
Posted in Down syndrome, Pro-Life Issues | Permalink
Comments
This test is fairly new...I think it came on the scene about 3 years ago when I gave birth to my 3rd son. Last fall, it was a creepy feeling to have them offer that test at my first OB appointment......I wonder if some (christian doctors) simply avoid it and don't mention it. It's not the law to offer it, or is it?
I think it's creepy that standard OB offices just offer everything that is out there without a second thought........
Posted by: Lisa | October 15, 2008 7:45 PM
btw: Just wanted to comment on this:
Our efforts to create a "perfect" world for ourselves and to guarantee "perfect" children eliminate many beautiful lessons on what it means to be human that parents of children with Down syndrome have discovered - most often accidentally
We have taken the " perfect" thing so far it's ridiculous.......We want complete control over the timing, gender, health, and everything else that comes to having children. I'd say it's even accurate to say that some Christians have forgotten that children are a gift. We are partnering with God in raising them. They are not a right, but a stewardship. HE will give us what we need to raise them...
Posted by: Lisa | October 15, 2008 7:49 PM
I refused any prenatal testing other than the "routine" ultrasound and I only did that to sneak a peek at the baby and possibly find out the sex of the baby. When I got to that point of my pregnancy with my 2nd child that they do the big test to screen for problems my ob asked me if I wanted the test and before I could answer he mumbled no as he made a note in his file. He explained that for legal reasons he had to offer the test even if he knew the patient would decline. He told me of a situation where a woman gave birth to a baby with an issue and sued her ob on the grounds that she was not given a test to detect the problem and have the opportunity to abort. He was obviously sickened by the story and I was as well. By the time I had my third baby we both laughed when he offered the test.
This was seven years ago and even though it may not be a law, the malpractice insurance companies dictate what the doctors must do to prevent lawsuits.
I think it is very sad that so many people want a perfect child as another accessory in their materialistic lives.
Posted by: michelle c | October 15, 2008 8:23 PM
Beautiful response.
Posted by: Shannon | October 15, 2008 10:37 PM
Great response!
Posted by: Lauren | October 15, 2008 11:18 PM
My heart breaks for all the children with "disabilities" (an unfair description, in my opinion) that aren't in the world because of abortion. I have often thought that I would love to adopt a child with Down Syndrome, or any child who's mother was contemplating abortion. Are there any adoption agencies that work with women who would otherwise abort, specifically those carrying children with a disability? Does that make sense?
Thank you again Barbara, for you insight to this issue.
Posted by: Addie | October 16, 2008 1:08 AM
Barbara,
Terrific response!
Your children also touch the thousands of people who view your website everyday! They are a gift to all of us.
Thanks for letting us get to know them through your stories!
Love,
Liz
Posted by: lizindc | October 16, 2008 9:41 AM
Lisa, you are right about the quest for "perfection." But there is no such thing as a "perfect child!" (or, really, we are all perfect in our IMperfection).
My sister, nearly forty, was a "perfect child." In her teens, she fell into drug use. She has been an emotional and financial drain on our family ever since. She has *yet to hold a full-time job for even one year. I worked in the disability field for seven years, and saw time and time again, "perfect" children who ended up with head injuries or other debilitating conditions. Tests cannot predict outcome. And the ability to test will always exceed the ability to treat.
Michelle, I remember a couple years ago hearing a story on NPR (originally in NYT) titled "Wrongful Life." It is exactly as you describe - doctors must offer/intervene solely to protect themselves financially. What a shame.
For many prospective parents of children with Ds, they get hung up on the "burden" of caring for a child ito adulthood. In reality, it is not a burden to be in the company of people you enjoy! This is why the Kennedy-Brownback bill is so important. Give people true informed consent - information - about the support and services available.
Stanford University has been a leader in Ds research, specifically how to improve the cognition of people with Ds. (I guess the new test is from a different department.) http://dsresearch.stanford.edu/research/
It is a shame that more money is spent on researching ways to eliminate people with Ds earlier and earlier, rather than improving the lives of people living with Ds. What does this say about us a people? Anyone else ever see the movie Gattaca? That totally creeped me out *before I had a child with Ds. I don't think I could even bear to watch it now.
Posted by: Jackie | October 16, 2008 10:16 AM
Addie, I'm sure Barbara has fabulous resources to share regarding adoption of children with Ds. We've thought about adding a fourth child through adoption someday, and of course we'd want a child with Ds!
A friend who wanted to adopt a baby with Ds, was concerned after the ACOG recommended the NT test, since it would "catch" all those young mothers carrying a baby with Ds. But I've heard success regarding international adoption and Ds - since often those children really are shut away in institutions after the age of 2 or 3 years. :-( They really are in the dark ages about Ds in China and Eastern Europe.
Good luck!
Posted by: Jackie | October 16, 2008 10:22 AM
Here is the linky for the NYT article I cited:
http://www.nytimes.com/2006/03/12/magazine/312wrongful.1.html?pagewanted=1&_r=1
Posted by: Jackie | October 16, 2008 12:20 PM
Thanks for your voice for "the less perfect". It really drives me crazy that we work so hard to eliminate what we think is not valuable, worthy or normal in our society. Reminds me of Hitler!
I have never had the priviledge of having a baby with Down's but our son Jonah did have Edward's Syndrome (Trisomy 18) and died shorty after birth. We were told we were in denial because we choose to carry him knowing the likely outcome. We just had a another child a week ago and I refused all testing and caught flack bacause I am 38 years old. I told my OB point blank if the baby is Down's he is welcome with open arms why do I need to know ahead of time.
I understand the fear people may have at the unknown but to take someone's life based on fear or inconveince is out right sick and an afront to the one who creates all good things.
I appreciate so much your standing up for those society is trying to get rid of one baby at a time.
Posted by: Mrs. M | October 16, 2008 12:44 PM
Mrs. M, my heart goes out to you. (((HUGS)))
After learning that a friend's baby had anencephaly, I came across parent interviews of babies with T18. I thought lucky are the parents that get to be with their baby, even if they only live a minute - the interviews were so moving. One family even pined for a baby with Ds, when they discovered their baby had T18. The families really came to terms, lined up great support, told their extended families. They still picked names, took a special baby outfit to the hospital, and were sure to take lots of photos, footprints and plaster hand molds, all while also planning memorial services. Amazing humans - all of them.
It really made me rethink my anti-pre-natal testing stance. If I *knew that my baby might only have one minute on this earth, wouldn't I want to be sure my parents were there? Would I perhaps want to enlist the incredible work of www.nowilaymedowntosleep.org?
Why does the desired result of a "perfect baby" mean more than the process of being pregnant and giving birth in our culture?
Posted by: Jackie | October 16, 2008 1:57 PM
I have always thought of pre-natal testing as just another tool to help me be the best mom I can be. If this earlier test were safer than a later test, maybe it would be a good thing? Of course I know many will use it in an evil way, but for those of us who treasure our children from the moment we first have an inkling they might be forming inside of us, it might be an option.
I could never understand the concept that if your baby passed all the tests you were in the clear anyway. I mean have these people never heard of the thousands of other childhood diseases, accidents, etc. that could befall your child at any time? Do we ever get to say - OK, NOW he/she is going to be Ok for the rest of his/her life - If they are only willing to raise "perfect" children they should probably rethink their plan to become parents. I pray God will prepapre me to handle, with grace, anything unplanned in the lives of my children.
The only reason I always had testing was to give myself the opportunity to be prepared, if I could be, to take good care of the child God gave me, by reading, researchng, etc. before I had to start taking care of an infant and make medical/treatment/other decisions with a sleep deprived brain.
Another point I always had in the back of my mind, although I have not yet had occasion to put it to use, is the powerful message it sends to those you encounter if you do in fact "choose" to have a baby outside of society's definition of "normal" as opposed to being surprised by one on delivery day. Just remember how surprised everyone was to learn Sarah Palin had in fact undergone pre-natal testing and had her beautiful boy anyway. If these doctors encountered more moms like that, maybe their message and delivery would change when delivering test reults to their patients.
I continue to learn and grow from reading this blog and all of the carefully considered comments. Thank you.
Posted by: Danielle | October 16, 2008 3:47 PM
My sonogram did, in fact, reveal a "chromosomal anomaly," but it was that vague. I didn't reveal the results to family, only to three close, like-minded pregnant friends. I didn't want to hear family-members opinions, or be pressured by anyone else. (We didn't reveal baby names for the same reason.) There was no indication of a heart problem. And I sure didn't want to risk a 1 in 200 chance of miscarriage post-amnio.
But you're right, they only test for the 350 most common things out of 4000. And one can argue that merely by testing for something, that it is undesirable. (see the book The Tentative Pregnancy)
So many things change *after birth, too. A heart problem then became apparent, but it disappeared on it's own with a year. A friend gave birth to a "perfect" baby only to learn that it needed GI surgery at 8 days old. There are never any guarantees, and if someone expects some sort of warranty to come with their baby they should rethink parenthood. :-)
There is also an unspoken heirachy of disability. "Well, my child might need a wheelchair, but at least they don't have a cognitive impairment" or "Down syndrome has no cure, but with autism there is hope for one," etc. People should recognize the *gifts* of each person, without ranking them.
Posted by: Jackie | October 16, 2008 4:46 PM
Thanks for your kind words Jackie.
I always thought that pre-natal testing was a tool to help the parent like you mentioned....to be prepared. I was naive and quickly found out at least in Canada that pre-natal testing has a very different agenda....as soon as the doctors confirmed Jonah's T18 they wrote us off and sent us home. Yet, if we terminated they had support groups and other forms of help available. It become so clear to me that they lead us down the testing rode so THEY could find out if my son's life was worth their effort. There are no laws in Canada to protect children born with disabilities....even if born alive. The tests had nothing to do with helping our family in anyway but to take his life. I was told to starve him if he lived to speed up the inevitable.
I guess for me, when they have the testing done it is permission to stop helping you and your baby....that's why I recommend to others not to have testing where I live because once they know they walk away.
But on the other hand I am glad I knew ahead of time. It was hard to plan a birth and a funeral but it gave me things to do and way to make that time really what we wanted for our son and family.
It is not wrong to use the testing for your advantage...but for us we thought thats what we were doing but were wrong.
Thanks again for your thoughts
Posted by: Mrs M. | October 17, 2008 2:19 PM
