Stories about: congenital heart defect

Mending a ‘backward’ heart

Joe, who has congenitally corrected transposition of the great arteries , sits with his dog OdieThe first clue came with a murmur.

At a mere week old, Joe LaRocca was diagnosed with an extraordinarily rare heart defect. Both ventricles were reversed.

Fortunately, with this particular defect, the arteries are reversed too, essentially “correcting” the abnormality. That’s where it gets its name — congenitally corrected transposition of the great arteries (CCTGA).

In a normal heart, the demanding duty of pumping oxygenated blood into the body is handled by the left ventricle, and the right ventricle pumps blood a short distance into the lungs. But Joe’s heart was far from normal.

“The right ventricle is not meant to do the harder work,” says Dr. Elizabeth Blume, Heart Failure and Heart Transplant Program medical director at Boston Children’s Hospital. “Since the ventricles are reversed in patients with CCTGA, over time, this muscle tires out.”

For the past three decades, the team at Boston Children’s Heart Center has medically and surgically managed Joe’s condition. And at 33, his heart is still ticking.

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Two-year-old twin makes history after receiving hospital’s 300th heart transplant

300th heart transplant recipient - two-year-old DeanThe cookies for Dean Andersen’s welcome-home celebration were decorated with “#300,” fitting for the two-year-old who, just six weeks earlier, received the 300th heart transplant performed at Boston Children’s Hospital.

“Dean does things in his own time and in his own way,” says his mom, Janet Andersen. “His transplant was no exception.”

The Boston Children’s Heart Transplant Program performed its first transplant in 1986, and this May marked the program’s 30th anniversary. Dean’s transplant in June was yet another reason for celebration.

“Milestones like these are not accomplished without our amazing multidisciplinary staff, whose unending commitment and dedication provide an incredible model of excellence; the families and their children, who have taught us so much about resiliency, love, and true spirit; and lastly, the donor families, who in their worst hours of loss, could see through to the needs of another child and family to donate the gift of life,” says Dr. Elizabeth Blume, Heart Transplant Program medical director.

300th heart transplant celebration cookies

A failing heart

Dean was diagnosed with a congenital heart defect while Janet was still pregnant. When Dean was born, he was found to have a more complex, rare type of congenital heart disease, which included corrected transposition of the great arteries with pulmonary atresia and atrioventricular canal defect. This meant his heart was on the wrong side of his body, the two main arteries leaving the heart were reversed, one of those vessels was not formed normally, and there was a large hole in the middle of his heart. Although a fraternal twin, his brother Lou was unaffected.

“After his shunt in the first week of life, his doctors told us that at about nine months to a year, Dean would need a complex biventricular repair including switching the atrial blood flow, closing the hole and a conduit to provide blood flow to the lungs, essentially to reconstruct the entire heart,” Janet explains. “And that’s what we geared up for in the first year of life.”

Dean went into the surgery healthy, but he never fully recovered. “It just wasn’t enough to help his heart,” says Janet.

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A prom to remember for two heart kids

prom photoIMG_5084 (2)Two kids went to prom together.

Not just any kids — heart kids.

Seventeen years ago, in 1999, Allie and Logan were roommates in the Boston Children’s Hospital Cardiac Intensive Care Unit (CICU), fighting for their lives against heart disease.

They were both undergoing the first two — of three each — open-heart surgeries.

Elizabeth (Logan’s mom) and Amy (Allie’s mom) spent every available moment at the bedside with their new babies — chatting about hearts, hospitals and life. Some days were more difficult than others, and there were setbacks for both kids.

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Faces of the Boston Marathon team

Miles for Miracles Lance
Lance, a Miles for Miracles runner, with his twins Lily and Luke

When I tell people I’m running the Boston Marathon as part of the Boston Children’s Hospital Miles for Miracles team, the standard reaction is the same. “I could never run 26.2 miles.” My response never varies. “Yes, you can … with the right training, anyone can do it.” My kids can’t give up when they don’t feel like doing something, and neither can I. ~ Lance

My feet ache. I’m often exhausted. I’m hungry all the time. And committing to a long run every Saturday — rain, snow or shine — isn’t always fun. But my efforts pale in comparison to what drives so many others on this team. There’s Lance, a non-runner channelling his children’s determination. And Hazel, a Boston Children’s operations manager and one of the fiercest runners I’ve ever met. And Melissa, a quiet presence, shouldering constant, unimaginable grief.

There’s no way I can acknowledge every single person who has been — and will be — part of this journey, so I’m approaching it the same way I think about the marathon … in 5-mile increments.

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