For those parents who choose to carry the baby to term and see what happens, it’s about asking how to optimize the outcomes. “We still know it is a life-limiting disease. Nothing has changed about the genetics of the disease. But some kids will live, some will leave the ICU, we don’t know which way it is going to go.”

Neonatalogist Dr. Natasha Henner describes how a subset of parents of children with Trisomy 13 and 18 are pushing — it is creating data that some kids survive beyond a year. And those who are surviving are surviving better than we thought they would. Which leads to the question of “How do you define a good outcome?” and does the parent have a different definition of a good outcome than we previously did. And how that influences the care now being provided to kids diagnosed with Trisomy 13 and 18.