Stories about: Pulmonary atresia

Danny’s journey to a biventricular heart

Danny, born with heterotaxy syndrome, peeks out from a tree.The first hint that something wasn’t quite right with Danny Sanchez-Garcia’s heart came at his mom’s six-month prenatal visit.

“There was a little blip on the ultrasound, but then it was gone on the next one, so they didn’t think it was anything and I didn’t worry any more about it,” says Danny’s mom, Cynthia.

Cynthia was overjoyed when Danny was born at her local hospital seeming perfectly healthy. But as the hospital staff monitored Danny overnight, they noticed his oxygen level was lower than normal and decided to run more tests. His doctors believed the tests pointed to a congenital heart defect called tetralogy of Fallot with pulmonary atresia.

“They transported him overnight to Boston Children’s Hospital,” says Cynthia. “I felt like I was on a roller coaster, especially as a first-time mom.”

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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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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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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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