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Life for CHD Patients Always Vigilant, Even Before COVID-19

You would never know it to look at Halle, but she is a tough heart warrior who has survived congestive heart failure and open heart surgery. Before her birth, Halle was diagnosed with Atrioventricular Canal Defect, and she got her “zipper scar” at six weeks old. At the same time, her parents learned she had a chromosome abnormality and Gilbert’s Syndrome.

Doctors told Maranda and Alan that they didn’t know how — or if — the chromosomal condition would affect Halle, so they watch and wait. So far, she has thrived and started kindergarten this year.

“She’s excelled at school, and we’re so proud of her,” Maranda said. “We wonder sometimes, is this when something’s going to happen? It’s hard as parents, not knowing whether she’ll be okay, but at the same time, trusting that she will.”

Halle has continued leakage in her mitral and tricuspid valves, which is closely monitored by her pediatric cardiologist, Neill Videlefsky, MD. She may require another surgery in the future, but for now, she is doing remarkably well. She participates in gymnastics and swim team, which her pediatrician recommended for building her heart muscle and stamina.

Like the rest of the world, Halle and her family have been locked down inside their home while COVID-19 spreads outside. Halle, who loves school, has maintained her connection with her teacher and classmates through Zoom meetings and phone calls.

We took the lockdown very seriously from the beginning, probably more seriously than others did at first,” Maranda said. “It was hard for her to see her friends still outside playing and going to playground. But she is more high risk, and any time she’s at risk, we take every possible precaution. She knows, even at her young age, that her heart and lungs are different. When I have to go out to the grocery store, she checks that I have my mask and tells me not to touch anyone.”

Maranda said wavering between believing that Halle will be okay and playing the “what if” game is the uncomfortable zone where she and other cardiac parents live all the time. It’s part of their normal lives to be constantly vigilant about germs and cognizant of their children’s high-risk status.

In February, Halle participated in a jump rope for hearts fundraiser for the American Heart Association at her school. Maranda said it was the first time she’d seen her daughter reach out to neighbors and family members to talk about her CHD.

“She told people that she had a broken heart in three places, and the doctors fixed it,” Maranda said. “She said, ‘There are more babies like me out there, and we have to help them.’ This was something she did all on her own.”

In the process, Halle shared about her heart condition with her kindergarten class, and she learned that one of her classmates also has CHD! Halle raised the second highest amount of donations, and she received a heart hero cape from AHA.

“It’s really neat to see her embrace it,” Maranda said. “I’m proud of her for that. She knows  that everyone has something that makes them different, and this is her thing that makes her unique.”

For more information about Sibley Heart Center Cardiology and our pediatric cardiology specialists, click here.

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