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'Feeling the Beat' for hypoplastic left heart syndrome

Families, advocates, researchers, and clinicians gathered at the Mayo Clinic Gonda Building.

Posted: Sep 8, 2018 10:53 PM

ROCHESTER, Minn. - 'Feel the Beat' is an event that brings together patients who have Hypoplastic Left Heart Syndrome, their families, and those who help take care of them at the Mayo Clinic Gonda Building.

According to the Center for Disease Control, Hypoplastic Left Heart Syndrome, or HLHS, is a critical congenital heart defect that occurs when the left side of a baby's heart doesn't form correctly during pregnancy. The condition affects normal blood flow through the heart. Babies born with the disease need surgeries or other procedures soon after birth, and may require other medical interventions throughout their lifetime. If the defect is complex enough, patients may need a heart transplant.

Gabrielle Wanek, a 23- year-old college student close to earning her degree in video design, was diagnosed with HLHS while she was in her mother's womb. "There's nothing that hinders me. My parents were always really adamant about trying everything, do whatever you want, don't stay on the sidelines," she explains.

Michelle Waletzko is the mother of a heart-healthy daughter and a 3-year-old son who has the disease. "It's been ups and downs and I think every family has a different journey. Some are better, some are worse, but we've kind of wavered, gone up the hill and down the hill. Things were not so great at the beginning, and then things were really really good."

At the event, families got to play science-centered activities and make care packages for the children at Ronald McDonald House.

There is no cure for HLHS. "It's not 'you've had a surgery and now you're better.' There's always scares and fears," says Waletzko. But despite the severity of the condition, she says her son and others who have HLHS are just like anyone else. "He's still a kid. We don't have to bubble wrap him. He still functions. He still climbs. He gets bumps and bruises. He likes being outside and he likes pizza."

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