Children Who Survive Congenital Heart Defects Can Face New Problems As Adults

A few weeks ago, our family gathered for a meeting that we hope will save my sister's life. Our goal was to demonstrate to a hospital social worker that we could take care of her should she get a heart transplant.

My sister Sara is now 50. (NPR isn't using her last name to protect her medical privacy.) For her to get on the transplant list, her anatomy needed to be suitable and her antibody levels low despite prior surgeries. She had to show that she could withstand the grueling transplant process; that she could consistently take her anti-rejection medications; didn't abuse drugs or alcohol; and had a stable home life.

A heart transplant costs about $1.4 million, according to data from the actuarial firm Milliman. And there aren't enough hearts to go around.

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