Stories about: congenital heart defect

After a rough start, Joey is finding his voice

Joey, born with trisomy 14 mosaic and several congenital heart defects, poses in front of kangaroos at the zoo.If you run into Joey Vautour in the grocery store, he’ll probably wave and give you a big “hi!” What you might not realize is that saying “hello” is still a big deal for the happy 4-year-old. Although Joey loves people and is social by nature, speech has not come easily for him.

Shortly after his birth, Joey was diagnosed with trisomy 14 mosaic. This is a rare disorder that causes an extra chromosome on some, but not all, of the body’s cells. Kids born with trisomy 14 mosaic can have a variety of medical problems, which for Joey included three congenital heart defects, serious gastrointestinal defects and a cleft palate. He has also faced a host of physical and developmental delays.

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Celebrating six: Stories of inspiring hearts

Sonia, who was born with congenital heart disease, dances onstage.

February is American Heart Month. Join us in celebrating our team members whose personal experiences led them to Boston Children’s Hospital Heart Center and honoring our patients whose care led them to pay it forward. From our hearts, to yours.


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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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