Theme: Advocating for your child

Trisomy 13 and 18 as an example of some parents now asking, “What if we did try to push a little further?”

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Trisomy 13 and 18 as an example of some parents now asking, “What if we did try to push a little further?”

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.