Stories about: Cardiac Neurodevelopmental Program

After a second chance, Lincoln is growing by leaps and bounds

Lincoln, a heart patient, poses with Buzz Lightyear and Woody
Lincoln and friends

“You’re the best mom ever,” is music to any mother’s ears. But when 6-year-old Lincoln spoke these words to his mom, Amber, for the first time just a few weeks ago, she totally lost it — in a good way.

“I never thought he’d be able to say that,” Amber says. “Thanks to his team at Boston Children’s Hospital, he’s come so far in just a few years.”

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Helping heart patients overcome developmental issues

Focus on Boston Children's Cardiac Neurodevelopmental Program
PHOTO ILLUSTRATION: PATRICK BIBBINS/BOSTON CHILDREN’S HOSPITAL

If you have a child with congenital heart disease (CHD), you’re likely well-versed in the medical issues your child may face. But many parents don’t realize their children born with CHD may also be at risk for developmental problems.

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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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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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