Stories about: HLHS

Life with HLHS: Keeping up with Lucas

Baird-boys-3By Rebekah McGowan

When we first learned that our son would be born with Hypoplastic Left Heart Syndrome, we were devastated. But once the shock had worn off we were desperate to talk to other families who had been through the experience. We asked our doctor about support groups, but he was less than impressed with what was available.

“They’re out there, but it’s mostly propaganda,” he said, scrolling through a Google search of HLHS communities. “Regardless of what you may read, these kids can’t run and they can’t do sports.”

And while he wasn’t impressed with what Google had to say about the future of kids with HLHS, he was impressed with what Boston Children’s Hospital’s Heart Center could do for children with the condition—and I’m so glad he was. Through his referral we went to Boston, and there we found the hope we needed. It was there that we learned that our son had a good chance of having an extraordinary quality of life under their care. We were also told that other than contact sports, our son could do anything he wanted to.

Over the years Lucas continued to thrive. And for each year he got stronger we participated in the NSTAR walk for Boston Children’s Hospital. It’s our way to say thank you to the hospital that saved him, and to help fund additional research, particularly in the areas of congenital heart defects that affect 1 in 100 babies born every year.

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Determined to overcome HLHS

Peter-Dunn-3 Kerri Dunn can always tell when her son Peter is determined to do something because when he gets deeply focused his face scrunches up and he squints one eye tightly shut, which his mother says makes him look like a cute, 2-year-old version of Popeye.

It’s a face Kerri sees a lot, because Peter is a very determined little boy. The youngest of six children, Peter is always trying to keep up with his older brothers and sisters—or “my kids” as he calls them. And, despite his smaller size, he still manages to do so—whether they’re walking, running or even climbing trees.

While his determination to keep pace with his older siblings may seem cute on the surface, it’s actually an incredible testament to Peter’s strong will. Not only is he managing to follow in their much larger footsteps, he’s doing so with only fifty percent of a working heart beating inside his chest.

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A heartfelt reunion

Boston_EileenHuacoBday_and_ParentsChildhood friends Eileen and Annie were like most young girls who grew up in the 1980s: They played with Cabbage Patch Kids and My Little Ponies, and when Cyndi Lauper came on the radio to remind listeners that “Girls Just Wanna Have Fun,” they both danced and sang along like the song was written especially for them. But these two had a lot more in common than a mutual love for big hair and toy horses.

For starters, both girls were born with a serious congenital heart condition—Annie with Hypoplastic Left Heart Syndrome (HLHS), Eileen with Double Inlet Left Single Ventricle (DIVLS)—that brought them to Boston Children’s Hospital’s Heart Center for treatment in 1986. While at the hospital, they shared a room, each waiting their turn to receive the Fontan Procedure, a specialized surgery that helps children who have only a single working pumping chamber in their heart.

But Annie and Eileen shared more than a room and treatment plan; they also shared a common heritage. Annie was born in Peru, but was adopted by American parents and moved to the United States as a toddler. Eileen was a native Peruvian and came to the United States exclusively for her treatment at Boston Children’s.

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Our patients’ stories: Mickey’s got heart

By Mary Kay White

Mickey

Our son Mickey has been coming to Boston Children’s Hospital his whole life. Actually, he’s been coming here even longer than that. He was diagnosed with a heart defect during an ultrasound taken the 20th week of my pregnancy. It was hard at first to tell what was wrong with his heart but the images showed there was a significant problem, so we began meeting with Boston Children’s doctors to establish a plan of action.

When Mickey was born it was confirmed that he had a congenital heart defect called a double outlet right ventricle with coarctation of the aorta as well as hypoplastic left heart syndrome and severe tricuspid valve disease.

Where a normal heart has four chambers, Mickey’s only has three. He was born without a left ventricle and a severely narrowed aorta, which is the main supplier of blood to the body; so many of his organs, including the lungs, weren’t getting the blood they needed to function properly. It was decided that his best chance at life would be a series of three surgeries to re-route the blood vessels from his heart to his lungs to make sure his body got all the oxygen it needed.

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