Stories about: Dr. Janice Ware

Experience Journal: A bereaved mother’s lessons from the heart

Jessica with EthanJessica Lindberg’s son Ethan was a brave heart warrior whose journey at Boston Children’s Hospital began before he was even born. At 20 weeks, they learned he had aortic stenosis and evolving hypoplastic left heart syndrome (HLHS). At 22 weeks Ethan was the 30th baby to have an in-utero procedure to open his aortic valve and relieve pressure in the left side of his heart.

By the time Ethan was 2, he’d had four open-heart surgeries. He was also having feeding problems, developmental delays, and was struggling with executive functioning and spatial tasks. Like many other parents of children with congenital heart defects (CHD), Jessica wanted Ethan to thrive as well as survive — to make sure he had the skills to eat, walk, grow and socialize.

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Nathaniel’s heart: One for the record books

care for congenital heart defect

As 3-year-old Nathaniel Wesley nervously watched the big machine move toward his chest, he spotted a familiar face: It was the cartoon character Barney — in sticker form. “Give Barney a kiss!” his parents urged, and he smiled at the friendly purple dinosaur while the scanner took images of blood flow in his lungs.

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