Stories about: Heart Center

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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Pulmonary vein stenosis: A clinical trial in Jack’s juice glass

Jack, who has pulmonary vein stenosis, is pictured sitting on the back deck at this family homeAt just 6 months old, Jack Marquis was suddenly given four weeks to live. After he was born with complex congenital heart defects, Jack’s doctors in California had performed two open-heart surgeries that they thought would save Jack’s life.

But just when they thought he was out of the woods, Jack’s condition suddenly began to deteriorate rapidly.

“On top of everything else, we learned he had a rare condition called pulmonary vein stenosis,” says Jack’s father, Andrew.

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Experience Journal: ‘Heart defects won’t keep me from reaching my goals’

Emily Ryan was born with coarctation of the aorta and a ventricular septal defect (VSD). But these congenital heart defects have never kept her down. Even though she’s had a pacemaker since age 4, she’s always led an extremely active lifestyle.

Emily’s parents and her team of caregivers from the Heart Center at Boston Children’s Hospital have helped Emily understand her heart condition and have given her the confidence and encouragement to realize her full potential — both in the classroom and on the track.

Now a competitive Division 1 athlete and outdoor leader in college, Emily wants everyone to understand, “Just because you have a congenital heart defect, doesn’t mean you can’t be active or do whatever you want to do.”

The Experience Journals are collections of stories, videos and personal experiences from families about what it has been like to live with their children’s illnesses. This video is part of the Heart Experience Journal, created by the Department of Psychiatry and the Heart Center.

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Thank you from the bottom of my three-chambered heart

Austin is the first person with a 3-chambered heart to run the Boston Marathon.
Austin hugging his father at the finish line of the 2017 Boston Marathon. Photo credit: Joseph Kelly

When people ask me what it was like to run the Boston Marathon, I don’t just think about the race itself. I think about about my entire life journey and all the people who helped get me to Boylston Street. Yes, the actual marathon day is one day in time that people can point to on a calendar, but it’s the long journey with all its ups and downs and the people you meet along the way, that makes it all worth it.

My journey has come full circle, as I went from my mom and I waiting for my dad at the finish line 19 years ago, to them waiting for me as I finished a marathon of my own.

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