Author: Ellen Greenlaw

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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Courtney’s story: Piecing together a genetic puzzle

Courtney, who has Loeys-Dietz syndrome poses after her college graduation. Courtney Whitmore was born 22 years ago with a cleft palate, two clubbed feet and fists that were so tightly clenched they couldn’t be pulled apart. Since Courtney was an otherwise happy and healthy baby, neither her parents nor her doctor saw cause to be concerned about these seemingly unrelated conditions. What they didn’t realize was that these were the first clues to a genetic puzzle that would take ten years to unravel.

The next clue came at age 3.

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Keeping the Beat: A retreat for kids with pacemakers and ICDs

Kids from the retreat get ready to zip line.
Photos by Richard Koch

Every year in early September, something extraordinary happens at the YMCA Camp Burgess on Cape Cod. That’s when a group of kids with pacemakers and implantable cardioverter defibrillators (ICDs) descend on the campground for the Keeping the Beat Retreat, a weekend filled with games, outdoor activities, dancing, singing and bonding. This year, I was lucky enough to get to join in on their fun as a volunteer counselor.

The weekend began with hugs, high-fives and screams of excitement as the kids piled off the bus and connected with old friends and former counselors. As a first-timer, I was clearly in the minority. Many of the kids have been attending the retreat for years, some since it began in 1999.

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Back in Kosovo after life-saving surgery, Lis’s heart remains in Boston

Lis, who had Kawasaki disease, poses for his birthday.Like many kids, Lis Spahiu loves wearing his Boston Celtics and New England Patriots t-shirts. His mom, Zana, jokes that sometimes she needs to hide them so he’ll wear something else. But Lis isn’t a typical Boston sports fan. This 5-year-old from Kosovo has grown to love Boston, and its sports teams, after several trips to the Boston Children’s Hospital to receive life-saving care for his heart.

“In Kosovo, the health care system is very poor,” explains Lis’s mom Zana. “So when Lis contracted Kawasaki disease at 5 months old, he was misdiagnosed.”

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