Stories about: Pulmonary atresia

Having Faith: A novel approach to heart surgery

Faith, who had heart surgery for pulmonary atresia using her own umbilical cord as a shunt, poses in a chair. When Rachel and Rudy Fasano of New Haven, Connecticut learned they were having their first baby after three years of trying, they were overjoyed, as were their families. At Rachel’s 15-week ultrasound to learn their baby’s sex, both grandmothers were also in tow, eager to hear the news. But the visit delivered some unexpected results.

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Sonia’s story: Saving hearts a world away

ALL PHOTOS: COURTESY OF THE GEAMBASU/CONOVARU FAMILY

When Sonia Conovaru was born in Romania in 2007 with a number of complex congenital heart defects, she was given a 10 percent chance of living 12 months. Her mom, Oana Geambasu, a young acting student, didn’t know anything about health care, but knew she wasn’t willing to accept that outcome. It was the start of a journey that would take them thousands of miles and forever change the course of their lives.

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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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