Kacey from Ella Grace directed me to this post from Where There's a Will... And I have to agree. Completely.
Not that I would wish complications or heart defects or Hirschsprung's disease or surgeries or delays or any of that scary stuff on anyone. But still...if the Jolie-Pitt family had a baby with a little something extra...wouldn't that be cool?
And just coming off of a meeting put on by my local Down Syndrome Association of Charlotte that highlighted just how little money our governement puts toward research on Trisomy 21 that is NOT completely directed at "early detection and prevention"...it makes one wonder how our kids would benefit from gads and gads of money spent on research to improve the quality of life from the Brangelina Bank.
I wish I had the energy to dig out the handout that has all the figures on it, but suffice it to say, the money put toward DS is completely disproportionate according to the number of people DS affects. Also, on that note, a point was made that one out of every 733 babies is born with Down syndrome. Born. Live births. Now, take into account that 90% of pregnancies with early detection of Trisomy 21 are terminated. So, with my meager math skills (and the help of a member of the DSAC board) that means that in reality, approximately 1 out of every 73 pregnancies is genetically enhanced. Right? So DS really affects a LOT more people than we even think about.
Anyway. Just my thoughts.
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- Laurie
- Wife to Bryan, Mom to Ian, Chase, Gavin, and Zeke. Down syndrome advocate. Literacy educator. Wine-drinking Christian. Keeper of chaos.
4 comments:
I always thought that 1 in 733 were the odds, but I guess I don't know enough about math to know how that really works. Is that seriously the actual birth stats? that's wild. Definitely something to think about. I hate math problems.
Let me start by stating that I am not good at math, but
I could be wrong but I thought the 1 in 733 is for live births which I believe is totally unrelated to the abortion rate (I think).
We don't know what the number of babies diagnosed prenatally and then aborted. Are 1000 given a diagnosis and 90% abort (900 babies) or are 100 given a diagnosis and 90% (90 babies) abort.
That is the number I would like to know. How many have a definitive diagnosis prenatally. How many babies are actually being aborted?
As we know, many babies born with Ds and totally surprise their parents with their diagnosis at birth.
Not too surprised that the government doesn't put a lot of money into researching T21. If we as parents want to see money going to T21 research, we need to support organizations like the Down Syndrome Research and Treatment Foundation.
OK, so I have stirred over my emotions on the posting for the past 2 days.I am not one for controversy but I just have to share my personal thoughts on this topic.
After reading the blog you mention-
this is my comment I left.
I am a mother of 3. My oldest son has a developmental delay and an impulsive behavior disorder.By no means am I comparing that to having a child with Ds. I just know that what I have been through the past 8 yrs-the testing,Dr's appointments,meds,therapies, not to mention all the tears-I would never wish upon another mother. I couldn't imagine wishing a child with any form of a disability on my worst enemy. What if you had a child who was blind or deaf,would you wish that upon an unborn child? I honestly don't mean to sound harsh at all. I completely understand that you mean no harm in your posting and I appreciate your honesty. I even agree with you 100 % how awesome it would be to kick out stigmas and misconceptions of Ds. I just feel rather than wishing Down Syndrome on an unborn child,maybe wishing they would adopt a child with an extra chromosome would be equally effective.
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