Stories about: complex congenital heart defect

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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SuperMason vs. complex congenital heart disease

“We want him to run and fall like any other kid,” says Adreana Duchesne, describing her approach to raising her 4-year-old son Mason. Adreana and her husband Jeremy know that even though their son has complex congenital heart disease, his lifestyle doesn’t need to be limited in any way.

“Mason is super hyperactive. He’s a maniac, he’s fresh; he loves to sing and dance and put on a show. He has a personality the size of Texas.”  He also has a scar the length of a ballpoint pen on his chest — the one visual reminder of his three open heart surgeries.

Adreana found out about Mason’s heart condition at her 20-week prenatal ultrasound near the family’s home in western Mass. “We were told to simply go home and grieve — that there was nothing we could do to save our son’s life. But we wouldn’t accept that.”

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This week on Thrive: June 7-11

Here’s what Thrive was talking about this week.

Child athletes who get back on the field right after suffering a concussion are placing themselves at great risk. One of our experts helped word a bill before Massachusetts lawmakers that would make concussion safety a bigger concern for public school sports teams.

The Wall Street Journal featured an article on Children’s Hospital Boston’s Gene Partnership Project (GPP), a new program in which all patients entering Children’s will eventually be able to take part in genetic research—as active partners.

Scott Leibowitz, MD, of Children’s Hospital Boston’s department of psychiatry, blogged about a soon-to-be launched gender and sexuality psychosocial pilot program he has coordinated at Children’s, which will be the first of its kind in the United States.

Casey Bolton, the mom of a Children’s patient, blogged the about her Children’s experience with her son, Parker, born with a complex congenital heart defect (CHD) called hypoplastic left heart syndrome (HLHS).

Just because your child suffers from asthma doesn’t mean he or she can’t enjoy running, swimming and other outdoor play made possible by the long, bright days of summer! Check out the Healthy Family Fun website, a project of Children’s Hospital Boston and Kohl’s Department Stores, for info on this subject and more!

Children’s pediatrician Claire McCarthy wrote a blog on how parenting can feel like a competitive sport.

Did you know kids can suffer a stroke? Though rare, it’s not just an adult medical condition. Hear from Michael Rivkin, MD, director of the Cerebrovascular Disorders and Stroke program at Children’s Hospital Boston, who talks about childhood stroke and its treatment.

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One patient's story: my baby's congenital heart defect

By Casey Bolton

During a routine ultrasound I had in the 20th week of my pregnancy, I learned that my soon-to-be-born son, Parker, would be born with a complex congenital heart defect (CHD) called hypoplastic left heart syndrome (HLHS).

Parker medical smile
Parker a few weeks after leaving Children's

Because of the severity of Parker’s condition, our doctors recommended an induced birth in Boston so he could be immediately rushed to Children’s Hospital Boston’s Cardiac Intensive Care Unit (CICU).

Parker’s first 24 hours of life were so unstable that doctors weren’t sure he’d make it. His condition was so severe that even as his parents we weren’t allowed to see him in the cardiac ICU until they could stabilize him with an emergency catheterization.

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