Author: Ellen Greenlaw

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.

Read Full Story | Leave a Comment

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.”

Read Full Story | Leave a Comment

Experience Journal: Jake is charting new waters with HLHS

Jake Pickles was born with hypoplastic left heart syndrome (HLHS), a serious congenital heart defect that causes parts of the left heart to be underdeveloped. As an infant and toddler, Jake had three open-heart surgeries to repair his heart.

Now 22, Jake is one of the oldest patients to survive with HLHS. This makes his prognosis uncertain. At some point in the future, he may need a heart transplant or more procedures. But Jake and his close-knit family try not to dwell on this uncertainty. Instead, they live with gratitude and hope.

Read Full Story | Leave a Comment

Hope for Kevin’s heart: Five-year-old shines after novel treatment for Ebstein’s anomaly

Kevin, who was born with Ebstein's anomaly, practices his dance moves.As the lights dimmed and Pharrell Williams’ “Happy” blasted from loudspeakers, Kevin Nolan III took to the stage for his very first dance recital. Sporting striped pants, a turquoise bow tie and a black top hat, Kevin joined his class in performing two hip-hop jazz routines to a packed house. Kevin’s mood was perfectly in step with the song’s lyrics.

“He had so much fun,” says Kevin’s mom, Laura. “He said he can’t wait to get on stage again.”

While a first dance recital is a big deal for any 5-year-old, it’s especially poignant for Kevin, who was diagnosed prenatally with Ebstein’s anomaly, a rare heart condition that causes leakage of the tricuspid valve and backup of blood flow into the heart. Kevin also had pulmonary valve regurgitation, which was stealing blood flow away from his essential organs. His condition was so severe that when it was first discovered during a prenatal ultrasound, doctors at a hospital in Boston said he might not survive.

“We met with a heart specialist who told us we should just say goodbye,” says Kevin’s dad, Kevin Jr. “He said nothing could be done.”

Read Full Story | Leave a Comment