Stories about: Diseases & Conditions

Building a healthy heart through cardiac fitness

Joao, who has Ebstein's anomaly, poses in New York City. This spring, Joao DeToledo will be stepping onto the volleyball court to play for his high school team for the first time. It will be a proud moment for the high school senior from Somerville — playing a competitive sport is a goal he hadn’t dreamt possible just a few years ago. Though Joao has always loved sports, he was born with Ebstein’s anomaly, a congenital heart condition that, until recently, has forced him to spend a lot of time on the sidelines.

When Joao expressed frustration at not being able to participate in gym and sports as much as he’d like, his cardiologist, Dr. David Fulton, recommended the Cardiac Fitness Program at Boston Children’s Hospital. The program, one of the first of its kind, offers kids and adults with congenital heart disease a chance to exercise in a safe environment.

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The joy of cooking (and eating) after tracheomalacia

Charlotte was diagnosed with EA/TEF and tracheomalacia as a baby

For most little kids, a trip to the supermarket is an annoying chore, made tolerable only by the opportunity to request sugary snacks as a reward. But when Charlotte McQueen accompanies her mother, Erin, to the store, it’s a journey marked by imagination and delight. “Mom, can we get that?” she asks, pointing to a can of pureed pumpkin. “Oh, and we’ll need marshmallows and we can make chocolate frosting. It will be a great cake!”

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The five emotions of raising a child with infantile scoliosis

Avery, who has infantile scoliosis, with his brace

One night, while doing our son’s usual bath routine, I saw what looked like a hump on his back. Avery was 6 months old at the time. At first, I thought that it was just something I was imagining, but the hump never went away. In fact, it seemed to get worse. When Avery was 13 months old, he was officially diagnosed with infantile scoliosis, a rare form of scoliosis that occurs in children under 2 years of age.

The first hospital we were referred to would not even consider treating Avery until he was at least 18 months, and that was not a guarantee, so after doing some research, we came to Boston Children’s Hospital for a second opinion. We were referred to Dr. Michael Glotzbecker, one of the surgeons in the Spinal Program at Boston Children’s Orthopedic Center that specializes in early onset scoliosis.

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New year. New lungs.

Teenage girl after lung transplant I’ve had asthma and chronic lung disease since I was very young. I had to use everything — from my head to my toes — to help me breathe. I remember being able to hear myself wheezing, to feel my lungs rattling. I had marks all over my face from my oxygen mask. I thought I would never be clear of mucus and never be able to walk without being out of breath.

All I ever wanted was to breathe.

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