Value of a Short Disabled Life - Trisomy 13 & 18

In  the December issue of Acta Paediatrica, Annie Janvier and Andrew Watkins have a powerful and sobering account of children with trisomy 13 and trisomy 18.  



Children with T13 or T18 have one-year survival rates of just 6-12%.  And they have profound neuro-developmental disabilities when they survive.  In light of these statistics, many parents choose termination of pregnancy or comfort care only at birth.  



But some parents choose life saving interventions.  Janvier and Watkins clarify that such interventions are not "futile."  Indeed, they are performed with some frequency.  And survival rates are respectable.  In light of this data, it is inappropriate, the authors argue, to describe T13 and T18 as "lethal disorders" that are "incompatible with life."  



Beyond arguing for more balanced information and personalized care, Janvier and Watkin argue that "fragile neonates with short lives can enrich society" by providing a "greater richness of a community in which a variety o lives and ways of being can flourish."