On Life

Prior to our adoption I read with interest about the new prenatal testing to detect Down Syndrome earlier in pregnancy.  My interest was more intellectual than anything at that point.  While doing the paperwork end of adoption our son was still a picture, an idea, not yet a little boy in my arms.  I sat today rocking him to sleep for his nap and prenatal testing is far more personal.  It is talked about as a way to help parents prepare for parenting a child with Down Syndrome.  To prepare for therapies and possible medical treatments that would be needed.  Preparation is good, but the statistics show that a prenatal diagnosis of Down Syndrome is overwhelmingly not used for preparation, but rather termination.  Up to 80-90% of the time the parents choose abortion.  As I watch my son these first weeks home, those numbers strike a deep chord.  The statistics are about the same in Hong Kong, his birth country.  His mother did not get prenatal testing and for that I am eternally grateful.  No, I do not know the choice she would have made, but I know, statistically speaking, his chance of surviving pregnancy had she known would have only been 10-20%.  This is not, for me, just about the choice a woman makes, but also about the life of my son and children like him.  I could be easily labeled by some as judgmental and insensitive, but what judgement is being made by these statistics.  A judgement that a life with DS is a life not worth living in the eyes of so many and yet a survey done by Dr. Brian Skotko at Massachusetts General Hospital showed that "nearly 99% of people with DS indicated that they were happy with their lives, 97% liked who they are, and 96% liked how they looked."  Perhaps we could learn something from people with DS.  As I soak up the time I have with my little boy, I am grieving society's judgement that the obvious and understandable outcome of discovering a child has DS prenatally is termination.  Perhaps it is time we as a society examine the judgements we make about living life with disability.


PS - Here are two other surveys of parents and siblings of people with Down Syndrome by Dr. Brian Skotko.

Having a Son or Daughter With Down Syndrome: Perspectives From Mothers and Fathers
Having a Brother or Sister with Down Syndrome: Perspectives From Siblings