Trisomy 13 and 18: When a lethal condition is no longer lethal

by Jenni LinebargerWhat is a “lethal condition” really? How does the definition change as medical advances are made? Several times a year, I meet parents who’ve had providers tell them that their baby has a “lethal diagnosis” (or worse, that the diagnosis is “incompatible with life”) when testing detects trisomy 13 or trisomy 18. Such dire prognostication sets the stage for all future interactions with the health care community. For some, it becomes a rallying cry to prove providers wrong, for others it becomes a sealed fate. For all, it declares a level of certainty that we just do not have.This summer, a paper published in JAMA by Katherine E. Nelson and colleagues sought to provide “more data about survival in general and after interventions” for families who have children diagnosed with trisomy 13 or trisomy 18. They conducted a retrospective, population-based cohort used linked health administrative databases for all children born in Ontario between 1 April 1991 and 31 March 2012 with a diagnostic code for trisomy 13 or trisomy 18. The data from this cohort confirms that survival is not as uncommon as once thought.They found:Median survival of 12.5 days for children with trisomy 13 , and 9 days for children with trisomy 18The rate of deaths slowed around 3 months of age in children with trisomy 13, and 6 months of age in children with trisomy 181-year survival was 19.8 percent for children with trisomy 13, and 12.6 percent for children with trisomy...
Source: Pallimed: A Hospice and Palliative Medicine Blog - Category: Palliative Care Tags: ethics hospital linebarger NICU pediatrics surgery Source Type: blogs