Sad and Frustrating Article Encouraging Doctors to Deny Life-Sustaining Care to Infants Like Ali

Alegria has been blessed with nothing but wonderful, supportive doctors, but I have heard from numerous other parents this is NOT the norm.  MANY physicans refuse to give life-sustaining medical care to children like Alegria citing the statistics "proving" this is a condition "incompatible with life".  Until today, I had not seen any numbers sharing how pervasive was this medical mis-information and bias.  Barb (a mother whose 3 month old daughter with trisomy 13 WAS denied life-sustaining medical care and died as a result) shared this article on facebook today.  http://pediatrics.aappublications.org/cgi/reprint/121/6/1106

My first reaction was WOW!! This article wasn't just published in some no name medical journal... this was  published in the journal of the American Academy of Pediatrics, not decades ago either... only 2 years ago!!! They found only 44% of NICU neonatalogists in NY would provide resuscitation to a child born with both Trisomy 18 and a heart defect. It then goes on to tell doctors they SHOULD refuse life sustaining care to child born with T18! Trisomy 18 and Trisomy 13 (what Ali has) are typically lumped together statistically, so these same doctors would easily have treated Alegria the same way!

This is one of the many reasons I am very thankful we did not have a prenatal diagnosis and we did not consent to genetic testing until Ali was over 2 months old! She is a joyful, healthy 16 mo old with full trisomy 13 (and she was also born with congenital heart defects!) I am thanking and praising God once again for the marvelous doctors we has provided for her who have chosen to treat Alegria as a child rather than a statistic!!!