Stories about: pacemaker

The gift of being heard

When Keira Kelley started collapsing shortly after her first birthday, her parents were terrified. But what was almost as upsetting was the feeling that no one believed something was actually wrong with their daughter.

“The first time it happened, she tripped over a chair and was unconscious and grey,” says Kate, her mom. “My husband thought she was gone. He called 911, and when the EMTs arrived she started to come to. They thought maybe she had the wind knocked out of her.”

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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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Summer in September: Pacemaker/ICD Camp lets kids be kids

Grace ziplining (3)Often you hear from parents that they want their child to be the best, the standout star — the child who rises above the rest and sets herself apart from the group as unique or special. But when you have a child who is often told NO, who has been set apart from a group because she is considered too fragile, too sick, too something … your hopes are different.

No child wants to be left out— an onlooker, an outlier — as many of our children are in their everyday worlds. For a parent, seeing your child cast aside due to something completely out of her control is often heartbreaking.

When Ligia Jordao, a nurse who worked for many years with the Heart Center’s Electrophysiology Program, told my husband Mark and me about Pacemaker/ICD Camp, we were skeptical. I couldn’t imagine sending our Grace off for a weekend by herself without us.

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Summer camp fun for kids with pacemakers/ICDs

Caroline_Sawyer_at_Pacemaker_Camp
 

Like many other 7-year-old girls, Caroline Sawyer and her twin sister enjoy watching Barbie movies, coloring and eating ice cream once a week. However, unlike other kids her age, Caroline has scars from several pacemaker surgeries. She got her first pacemaker at 2 days old because of congenital heart block, a form of arrhythmia.

At Boston Children’s Hospital’s annual Pacemaker/ICD (implantable cardioverter defibrillator) Camp, Caroline is just like everyone else.

On a September weekend, more than 50 campers flock to the YMCA-owned Camp Burgess & Hayward in Sandwich, Mass., for three days of kayaking, rock climbing, zip lining and camp songs. They also compare scars from pacemaker/ICD surgeries. Teen campers talk about being “part robot,” going through metal detectors and how their pacemakers are programmed to slow down at 10 p.m., so they can sleep at night. 

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