Tuesday, January 25, 2011

Disappearing Babies?

Over the past few weeks, I am sure that many of you have read the various articles regarding the development of prenatal Down syndrome-specific testing via blood sample at 12 weeks pregnant.

"Will Babies With Down Syndrome Slowly Disappear?"   


http://childrenshospitalblog.org/will-babies-with-down-syndrome-slowly-disappear/#disqus_thread

I know that this is a touchy subject.  This is NOT a blog or forum to argue pro-life or pro-choice views.

All of that being said, I feel it is impertinent for me to say something.

Medical research can be wonderful.  It can save lives or find treatments for various diseases or develop exciting things like pacemakers to keep some of the people in my family alive.

As I read these various articles, I shake in fear.  Fear that people are making decisions uninformed.  Many of these articles state that medical professionals do not know how to counsel parents about DS.  That is true.  I can actually state as being both a medical professional and also as being the new mother on the receiving end.  In fact,  Dr. Brian Skotko recently published a study in Pediatrics that involved gathering information from mother who learned of their child's DS diagnosis postnatally.  He and his colleagues concluded that many of the mothers felt uninformed about DS, heard mainly negative aspects rather than positive ones, and were not given access to other venues of information (ie local DS society, other parents for children who have DS).

Then the comments on the articles about the new testing.  Oh the general populations' comments on these articles. . .it just shows me how uneducated people are.  It also makes me cry.  Is this what people think about my Ellie when they see her beautiful face??  Is this how she will be viewed when she is older and in school and in the workplace?

Comment: If you can prevent suffering, wouldn't you? Perhaps something like Type II diabetes -- a disease that is usually adult-onset and easy to manage with proper attention -- wouldn't be worthy of an abortion, but something as serious and disabling as down syndrome? I know that the individuals who have it often lead relatively good lives, but they die young and often suffer quite a bit during their lives.

I would urge the parents of these children who advocate against testing or termination upon a positive test to examine how much of their opinion is based upon their own need to care and love for their child. Yes, your child is likely wonderful and kind -- most people with down syndrome are incredibly nice -- but are all the struggles they go through worth it? Wouldn't it be good to abolish something as clearly problematic as down syndrome, to effectively cure it?


Yes, I realize that some people will choose to have their baby whether or not the blood test shows DS--that they just want to be prepared and know in advance.  However, as it stands right now, with the current testing, only 8% of those with a prenatal diagnosis (this is not even a definitive diagnosis people!!!  but an odds ratio) keep their little blessing.  With this new test, I struggle to think what will happen. . .

Why cannot funding be used to find better treatments for colon cancer or better techniques for craniosynotosis repairs?  What about therapies for autism?  Treatments for childhood and adult obesity and all of the complications that occur with that?  Goodness, more funding for speech therapy would be great.  Instead, we are screening for DS specifically?  What next?  A prenatal screening test for cerebral palsy, autism, ADHD, asthma, the need for braces?  Then we can have the perfect child.  Oh come on.  Perfection is unattainable.  If it could be achieved, then in my eyes, Ellie Bear has it.  With all 47 of her chromosomes.


Our Perfect Angel

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2 comments:

  1. Perfect! God doesn't make mistakes Humans do :) And by the way the picture at the top of this page is freakin adorable!

    ReplyDelete

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