Stories about: Tetralogy of Fallot

Prenatal diagnosis sets James up for success

james-tetralogy-of-fallotI remember it like yesterday. Pregnant with my first child, I went to my 9-week scheduled ultrasound not really knowing what to expect. I heard a little baby’s heartbeat in my belly! I was blown away.

When you go for your 18-week ultrasound, make sure your baby’s heart is checked. A simple scan can change everything. ~ Elizabeth

At the 18-week scan, it appeared that the baby only had one kidney. The doctor seemed to think that everything else was normal, but he told me I had the option to make an appointment at Boston Children’s Hospital for a fetal echocardiogram. My husband had to work that day, so my mother came with me. I truly was not concerned.

Little did I know that my life was about to change forever, and all because of a simple scan that I almost didn’t receive.

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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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Guatemalan teen with congenital heart defect inspired to study medicine

Juan PabloAs a child growing up in Guatemala, Juan Pablo was told by his parents that he was born with a little hole in his heart that was patched up. “It wasn’t until I was a teenager that I figured out that what I had was not that simple.“

Juan Pablo was born in 1995 with Tetralogy of Fallot (ToF), a condition involving four different congenital heart defects. With no pediatric cardiac surgeons in Guatemala at the time, Juan Pablo’s parents took their newborn son to Switzerland for treatment, which included open heart surgery to remove his pulmonary valve. He went on to lead a normal, healthy childhood.

As he matured, Juan Pablo began to ask questions about his condition and his past. He found out that his surgery in Switzerland was performed by Aldo Castañeda, MD, a native of Guatemala who had retired in 1992 as Chief Cardiac Surgeon at Boston Children’s Hospital. Juan Pablo also discovered that Castañeda was back in Guatemala running the country’s first pediatric cardiac care program at Unidad de Cirugia Cardiovascular Pediatrica de Guatemala (UNICARP).

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Heart2Heart: A legacy of mentoring

Alexa Horwitz and Eliot Greene have a lot in common. They’re both high school honor roll students. Eliot is his class president at Belmont Hill School, while Alexa is editor-in-chief of the school newspaper at Buckingham Browne & Nichols. Both are varsity athletes, even participating in similar sports—tennis for Alexa and squash for Eliot. They’re friendly, engaging and quick with a smile. And they’ve both undergone multiple open-heart surgeries at Children’s Hospital Boston, making them perfect candidates to pilot the Heart2Heart at Children’s Teen Mentoring Program.

The program—currently available in Cardiology—matches high school or college students who were born with heart defects with patients currently being treated at Children’s. It’s the first program of its kind involving face-to-face mentoring with both patients and parents. “The questions they have are the same questions we had,” says Alexa. “It’s easier to talk to someone who knows firsthand what you’re going through.”

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