Three-Year-Old Boy on the Road to Recovery from Heart Defect

At 3-months-old, Charlie Levin wasn’t thriving like a normal baby. He was losing weight, constantly vomiting and breathing rapidly. After a chest X-ray in his hometown of Buffalo revealed an enlarged heart, Charlie was diagnosed with hypoplastic left heart syndrome. Charlie’s left ventricle was underdeveloped and unable to pump sufficient blood to his body. The right ventricle had to work harder to pump blood, making it enlarge.

Charlie was transported by ambulance from Buffalo to Golisano Children’s Hospital at the University of Rochester Medical Center, where George Alfieris, M.D., chief of Pediatric Cardiac Surgery, performed the first in a series of open-heart surgeries that saved his life.

“Most people don’t know that some of the heart babies from Buffalo, Syracuse and Erie, Pa. go to Rochester if they need surgery,” said Merredith Levin, Charlie’s mother.

Charlie stayed in the hospital for six weeks after undergoing his first surgery, which reduced the blood flow to Charlie’s lungs and re-routed the right ventricle to pump blood to his body. At 13-months-old, he went in for his second surgery, which re-routed the blood flowing back from the top third of Charlie’s body so that it went directly to his lungs. Charlie went into the second surgery healthy and strong, and only needed six days of recovery in the hospital. He went through physical therapy and occupational therapy after the surgeries and caught back up to where he should be. Charlie has two more surgeries ahead of him before he reaches kindergarten – one surgery to repair a leaky valve and another to re-route the blood flow from his lower body directly to his lungs.

“We all work together in Buffalo, Syracuse and Rochester to provide top-rate pediatric cardiovascular services to the kids of western New York,” Alfieris said.

Now, Charlie is pretty much like any normal 3-year-old boy, but his parents will never forget what he went through. His diagnosis inspired his parents, Ken and Merredith, to start Heart Works, a group that aims to extend and improve the lives of children with congenital heart disease.

Heart Works will be hosting its first fundraiser in East Amherst Saturday, Sept. 10, at the Transit Valley Country Club. An Evening with Heart Works will have live music, food, dancing and a silent auction. Tickets are $50 and can be purchased online at www.heart-works.org.

Proceeds from the fundraiser will be split evenly between the American Heart Association (AHA) and Golisano Children’s Hospital. Levin wants to help fund research with AHA and help Golisano Children’s Hospital purchase new equipment for the Children’s Heart Center.

“Golisano Children’s Hospital saved Charlie’s life,” said Levin. “We hope the funds we raise will help other children get the chance to live a normal life, just like Charlie.”