Hypoplastic Left Heart Syndrome: Ben's Story

Ben was diagnosed with hypoplastic left heart syndrome before he was born — and he was just 3 days old when he had the first of the three open heart surgeries he would need to survive.

Ben Hypoplastic left heart syndrome (HLHS) is a severe heart defect in which the left side of the heart is underdeveloped – and it requires a series of open heart surgeries.

Pediatric heart surgeon Stephanie Fuller, MD, performed all of Ben's surgeries at The Children’s Hospital of Philadelphia, reconstructing Ben's heart so that it would function as a one-sided pump. His heart now receives oxygenated blood from the lungs and pumps it to the body. This is called Fontan circulation.

Ben is now a funny, feisty 6-year-old who loves climbing trees and playing with Legos. “People tell us, ‘If we didn't know that he had a heart condition, we would never believe it,’” says his mom, Ellen.

Originally published February 2015

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