Friday, October 21, 2016

31 Days of Down syndrome Awareness - Day 21

One topic that is hard to avoid when you are talking about Down syndrome awareness is the fact that some where between 73 and 95% of pregnancies with a prenatal diagnosis of Down syndrome are terminated.  The statistics vary a little but the point is that pregnancies that would otherwise be wanted are being terminated simply because of a Down syndrome diagnosis.  Here is a link to a recent article on the topic.

MARK LEACH OCTOBER 13, 2016 GONE: estimate reduced by 20% of people with Down syndrome in United States

I should frame this by saying that I do not believe in abortions.  That is my personal belief.  Your beliefs may be different and that is OK.     It is OK if we disagree but  I want you to really think about the statistic that you just read in that article.   Here it is again for you reading ease :-)

  A 2012 study estimated that about 74% of pregnancies with a prenatal result for Down syndrome are selectively terminated, i.e. a 74% termination rate. But, that does not equate to a 74% reduction in total births of babies with Down syndrome. This is because many parents do not opt to have prenatal testing and (as reported in this post) more women than ever are choosing not to abort following a prenatal result. Plus, not all pregnancies carrying a child with Down syndrome will result in a live birth due to natural miscarriage (as reported here). Therefore, while there is a 74% termination rate, only 30% of all live births are reduced due to selective abortion.

We knew prenatally that Riley had Down syndrome.  I don't share that to claim to be better or have a stronger moral compass than anyone else.  I say that because I can also say it was one of the scariest times of my life.   I felt scared and alone and not capable of parenting a child with special needs. 

 There are more prenatal tests available now than ever before and they are easier and less intrusive than ever.  I don't think prenatal testing is bad.  I will always be grateful for the time I had to prepare for Riley's arrival.  I stressed and planed and cried and stressed and cried some more during that time.  Honestly I still had to look and make sure they got it right in the delivery room.   As stressful as it was I was able to read and research and grieve before I had to balance that with caring for a baby, pumping milk to take the NICU and trying to be a mom to Rex all while being completely hormonally imbalanced after giving birth.  

People that would otherwise be attempting to carry their pregnancy to term are deciding that it is a life not worth living because of a diagnosis of Down syndrome.  They are deciding a child just like Riley isn't able to life a meaningful life full of love, joy sorry, anger and 
sassiness.   Every life is valuable.  I won't lie to you and say everything for Riley is roses.  Sometimes life is hard.   I'll let you in on a little secret though Life is hard at times.  Life isn't always fair but it is always worth living.   

I guarantee you that our family looks at life a little differently now that we have Riley.  We celebrate more of the little things.   We try to remember that we are all different and that being different is ok.  We laugh a lot!  I hope that by sharing our family others can see the value in the life that Riley is living.  

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