When a Baby Dies

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| New York Times Health.

Ethan Butler’s best chance to truly live was for his parents to accept the fact that their infant son would die.

Born with a congenital heart defect, Ethan had lifesaving heart surgery when he was 10 days old in the spring of 2008. Unfortunately he suffered a very rare complication, a major stroke that left him severely brain damaged. Physicians from different disciplines told Ethan’s family that their little boy had limited brain function, for which there was no cure, and that a ventilator was keeping him alive.

I was then invited by the cardiology team to meet Ethan and his family. Our interdisciplinary team has met the families of many children facing life-limiting conditions. Each case is heartbreaking, tragic and utterly unfair in its own way. Our role at Children’s Minnesota – one that still goes unfilled at many pediatric hospitals – is to work with families on a plan to help their child live as long as possible, as well as possible.

The family told me about Ethan’s short life and showed me photos of him.

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