Stories about: congenital heart defect

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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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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