Stories about: ICD

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


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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