Stories about: hypoplastic left heart syndrome

Family Advocacy Day: Three families take their stories to Congress

Nova, who has Pfieffer syndrome, walks through a park.
Nova is taking her story to Congress

Later this June, three patients from Boston Children’s Hospital will be joining other kids and young adults from across the country at the 2018 Speak Now for Kids Family Advocacy Day in Washington, D.C. During their visit, they will share their stories with Congress and ask them to protect all children’s access to health care.

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Experience Journal: Jake is charting new waters with HLHS

Jake Pickles was born with hypoplastic left heart syndrome (HLHS), a serious congenital heart defect that causes parts of the left heart to be underdeveloped. As an infant and toddler, Jake had three open-heart surgeries to repair his heart.

Now 22, Jake is one of the oldest patients to survive with HLHS. This makes his prognosis uncertain. At some point in the future, he may need a heart transplant or more procedures. But Jake and his close-knit family try not to dwell on this uncertainty. Instead, they live with gratitude and hope.

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Experience Journal: A bereaved mother’s lessons from the heart

Jessica with EthanJessica Lindberg’s son Ethan was a brave heart warrior whose journey at Boston Children’s Hospital began before he was even born. At 20 weeks, they learned he had aortic stenosis and evolving hypoplastic left heart syndrome (HLHS). At 22 weeks Ethan was the 30th baby to have an in-utero procedure to open his aortic valve and relieve pressure in the left side of his heart.

By the time Ethan was 2, he’d had four open-heart surgeries. He was also having feeding problems, developmental delays, and was struggling with executive functioning and spatial tasks. Like many other parents of children with congenital heart defects (CHD), Jessica wanted Ethan to thrive as well as survive — to make sure he had the skills to eat, walk, grow and socialize.

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Finn’s heart: A journey into the unknown

Finn travels from South Carolina to Boston Children's Hospital for HLHS treatment.

Three-year-old Finn stands in front of the full-length mirror in his parents’ room, with his shirt off. “Mommy, look how cool!” he shouts, placing his finger along the long scar running down the middle of his chest. “That’s where I had my heart surgeries!”

“That’s right, buddy,” Jenna replies, surprised because they’d never talked about his scars. “We always tell him he has a special heart. We don’t ever want him to feel different.”

Finn runs off to play.

It makes Jenna smile and sometimes cry to see her son so happy and full of life. Now 5 years old, Finn has had three open-heart surgeries to treat multiple complex congenital heart defects, and his journey is not over. “We are so thankful to Boston Children’s Hospital for giving our child life,” says Jenna. “Each day is a blessing.”

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