The general perspective about Down syndrome is relatively better today than it was 20 or more years ago. Unfortunately, despite the awareness generated over the past several years by organized groups, blogs, families, and self-advocates with Down syndrome, there is still a lot of work to do. Headlines like Down's syndrome test breakthrough 'on the horizon', New screening halves the number of children born with Down syndrome, and Non-invasive screening in early pregnancy reduces Down's births by 50 percent make it alarmingly apparent that society in general has not really changed their minds about Down syndrome.
I reshared a friend's status on my facebook wall yesterday (referring to the article Down's syndrome test breakthrough 'on the horizon'):
"He said...[this] will encourage more couples to take the test and therefore slowly eradicate the disease." The "disease" being Down syndrome. MY KID. Could they be any more obvious? I'm all for early detection if it means bringing babies into this world more safely; we knew ahead and I'm glad for that. But suggesting this as a means of eradicating my child and people like him is just sickening.
It's so sad.
If tested positive, why not encourage more proactive prenatal care and perhaps a form of targeted nutritional intervention (TNI) as the baby develops in utero instead of suggesting or encouraging termination? Is there scientific research about prenatal care for preventing or lessening the chances for heart defects and other common issues in newborns with DS, thus giving them a healthier start in life?
There is no cure for Down syndrome. But many individuals with Down syndrome are leading happy and productive lives. The general consensus among families and friends of people with Down syndrome is that people with DS bring out the best in us and give our lives more meaning. I agree 100%.
What's next? There is no cure for autism, cerebral palsy, and other conditions. If a non-invasive blood test to detect these in utero is developed, would it also be viewed as a means for eradicating fetuses diagnosed with such conditions?
9 comments:
"would it also be viewed as a means for eradicating fetuses diagnosed with such conditions?"
I hope not. :( I think children today are faring better than hundreds of years ago and I hope it gets even better in the future.
I agree with you whole-heartedly. I wish that more funding would be put into researching ways to help our kids live productive & healthy lives. Newsflash to the medical community: Not everyone who learns of a DS prenatally wants to "terminate" the pregnancy!!! I know that for a fact because, I learned about my son's DS & heart condition prenatally & he is still here & he is thriving. I would also like to add that fewer parents might be so quick to terminate if physicians gave a more accurate portrayal of what raising a child with DS is like, rather just focusing on the negatives, as many tend to to do.
This has been a hot topic in the Ds community. I was at my geneticist a month ago and asked her about the test. She said it's only about 70% accurate and not a reliable test. She doesn't think it will make it into the mainstream because of that. She said they will not be using it at her clinic. I think it has a long way to go and I guess I wouldn't worry about it right now. I don't think there will ever be a non-invasive test that will be accurate enough to cause a lot of terminations. And I think there will always be people who find out prenatally that won't terminate because of love, morals or religion. Just my two cents, but I understand where you are coming from because those words are hurtful. Especially since we know first hand how wonderful our children are.
Oh, dear, what a post. I think a non-invasive method for detection is a marvelous thing. We opted for that because we (a) didn't want to risk a miscarriage and (b) weren't going to abort if the ultrasound looked positive for Down syndrome, but rather be prepared if we had a baby with Down syndrome. The statement in the article isn't directly quoting the doctor but I can't help but shudder at the suggestion that the test will "eradicate the disease". The idea that anyone would abort a less-than-perfect baby is abhorrent to me - and I'm pro-choice, which is a whole other issue - but this is just wrong.
Thanks again for posting this - Hugs,
Deb
Even though we have come along way in the last 20 years,I agree that we have so much more work to do to chance societies view of how they view down sydrome. The 90% statistic of Women who abort thier child with down syndrome is alarming and with the new testing Im sure that will increase. As a mother of a child with down syndome I feel the answer is educating people of the joys of raising children with down syndrome through different medias and to have doctors inform parents of the positive rather than negative. Having a mandatory film slide show showing the love the parents have for thier children with DS would make a big difference.
All this money they spent on developing a non-invasive test could have been spent on research into cognition or speech to develop therapies that would help actual living children with Down's Syndrome. I also have a child with DS. We should not say there is no cure. Of course we don't want to change DS - its not a problem. But there are problems which many people with DS share and are also problems for others, like cognition and memory issues and speech difficulties. We should focus on these so people with DS can live life to the full and independently. DSTRF is making great headway on this research but they do not get the funds available to other conditions.
You know I feel the same way! You're so right that attitudes really haven't changed for society - now its just easier to terminate. I think in that article he did say they were looking at researching other prenatal tests for things like cerebral palsy. It just won't end.
Personally, I do not see individuals with Down syndrome as "less-than-perfect". I do not believe happening to be born with the "typical" number of chromosomes makes someone "perfect" or in any way "superior" to someone that is not born with the typical number of chromosomes. They are ALL human children, born as equals, and being human children, ALL will have their individual strengths and challenges, whether they have the typical number of chromosomes or not.
How sad. Ds isn't even an inherited genetic disease in most cases. It seems their rationale is to get all parents to have testing and follow through with termination if they indeed hope to "eradicate" people with Ds. My daughter is 3 months old, we found out New years eve, when she was 12 days old that she did indeed have an extra copy of chromosome 21. My husband and I both knew when we saw her eyes the night she was born. She has been a joy already. I think the fear is put needlessly in place by some in the medical community. My grief did not come from the fact that my daughter has Ds, it came from the fact that people choose to see the diagnosis instead of her.
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