Author: Ellen Greenlaw

A biventricular repair for Jayce’s one-of-a-kind heart

Jayce, born with heterotaxy syndrome, crawls through a tube at the playground.Amanda Mattioli was working in Afghanistan as a government contractor and had just completed a whirlwind round of travel to three separate continents when she learned she was pregnant.

The helicopter unit that took her back to the main base, so she could return home for her pregnancy, gave her a unit sticker to commemorate her baby’s first helicopter ride. Little did she know it would also mark the beginning of a much longer journey for her and her son, William “Jayce” James.

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Does your child have narcolepsy?

Teenager with his head down is sleeping in class, possibly with narcolepsy.

Teens are a notoriously sleepy bunch. Left to their own devices, many will happily snooze into the early hours of the afternoon. About 28 percent of teens also report falling asleep in school at least once a week, according to a poll by the National Sleep Foundation. This can make it difficult for parents to know when a teenager’s love affair with sleep might be the sign of narcolepsy or another sleep disorder.

While narcolepsy is a rare condition, affecting only about .05 percent of the U.S. population, it often goes undiagnosed. It is a condition that typically develops between ages 10 and 20.

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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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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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