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.
Caroline had a blast jumping on the trampoline and going swimming with friends who also have ICDs. The only activity that she needs to worry about is contact sports, which could break her life-saving device by impact. Caroline is a really tough, courageous little girl, says her mother, Kelly Sawyer. “It does make me sad that she will have more surgery, but I’m also really hopeful for her future.”
Why kids need Pacemaker/ICD Camp
Children with pacemakers can be excluded from regular camps because of liability concerns.
“Most camps are not able or willing to take in a camper with a medical condition without medical equipment and skilled care, which usually exceeds what they have on-site,” says Lou Bergholz, camp director and the owner of Edgework Consulting. Pacemaker/ICD campers come from all over New England and even states as far away as California.
Amy Walsh, a pacemaker nurse from Boston Children’s, explains that children with pacemakers/ICDs often have medicines for rhythm issues, and they may not get the supervision they need at a regular camp. (She explains the personalized approach of Boston Children’s Inherited Arrhythmia Program in this video.)
Pacemaker/ICD Camp solves the dilemma of safety issues by weaving together medical staff from Boston Children’s and camp staff to design a safe and fun environment for kids with cardiac devices. Boston Children’s staff has a full suite of necessary equipment to take care of campers during an extreme situation, Bergholz adds, which is something that regular camps cannot provide.
Caregivers and Pacemaker/ICD Camp
The number of pacemaker/ICD patients in the U.S. totals about 10,000. Boston Children’s Electrophysiology Service was among the first to address the unique needs of this patient group.
Finding strength and friends at Pacemaker/ICD camp
“[We] wanted the children to see that there are other children with pacemakers/ICDs and to show families that their children are not as fragile and vulnerable as they (the parents) might believe,” says Dr. Berul, a former Boston Children’s cardiologist who helped found the camp.
Twelve-year-old Danny Simons, an ICD user who has survived open heart surgery, feels different from other kids at school because he cannot run as fast. Yet he boxes, sails, plays golf and does karate.
“Camp made me feel better because I got to meet people who went through the same experience as I did, and everyone there had an ICD or a pacemaker,” Danny says.
On the last day of camp, the energetic campers beat the huffing and puffing counselors at the annual Campers vs. Counselors Capture the Flag Championship.
“The goal at camp is to have kids try new things and participate to the fullest extent they can while still being safe,” says Boston Children’s pacemaker nurse Jamie Harris.
“At this camp, every parent knows her kid is OK,” Danny’s mother, Tong Sun Simons says. “I could tell Danny was happy when he came home. It is a comfort knowing Pacemaker/ICD Camp is for children with those devices, and this camp also lets my son know he is not alone.”
Campers attend free of charge thanks to donations and a grant from Boston Scientific, a pacemaker/ICD manufacturer.
Learn more about Boston Children’s Pacemaker/ICD Camp.
About the blogger
Megan Clancy is a freelance journalist based in Southern California. A current patient of Dr. Laura Bevilacqua, Megan also has a pacemaker. She credits the incredible physicians, nurses and staff from the Boston Children’s Hospital Heart Center as the best in the world and the only team she’ll ever trust.