SUCCESSFUL COPING

Children with heart defects find camaraderie at Camp WholeHeart

Children and teens with complex congenital heart defects learned about Latino culture at Camp Don Lee in Arapahoe during the ninth annual Camp WholeHeart in October. 

Twenty-seven campers from eastern North Carolina enjoyed the theme, “La fiesta de nuestros corazones/The fiesta of our hearts,” with activities including piñata and worry doll making, dance and cultural lessons from East Carolina University’s Student Association of Spanish-Latino Affairs (S.A.L.S.A.) and a performance from the energetic Mariachi Charros de Mexico. 

While the camp’s activities were fun, many of those involved said it’s the camaraderie that brings campers back each year. This year, two of the camp counselors were former campers themselves. 

Erika Stilley, pictured above, is enjoying her final year as a camper. She plans to return next year as a camp counselor.

Erika Stilley attended Camp WholeHeart as a camper for the last time this year. Stilley has attended camp since its inception. 

“I look forward to Camp WholeHeart all year. Not many people in my day-to-day life understand what it’s like living with this disease but here at camp, everyone gets it,” said Stilley. “While I am sad that this is my last year as a camper, I can’t wait to come back as a counselor next year.” 

The camp’s supportive environment provided a good opportunity for pediatric cardiologists, who were on-site in shifts throughout the camp, to discuss heart function with the campers to help them better understand their own heart defects. 

A wide variety of heart defects were represented among the campers. Many have had multiple open heart surgeries with the potential for more surgery in the future. Some have suffered strokes, experienced extended hospital stays or had pacemakers implanted. Some children may have also faced developmental disorders and learning difficulties. 

Dr. Priti Desai, assistant professor of child development and family relations at ECU, serves as camp director. “One of the best things about camp is that the campers get to see doctors and nurses as down to earth people who can have fun, and the doctors and nurses get to spend time with the children away from clinics and hospitals,” said Desai. “It puts everyone at ease and makes them feel like part of the same team.” 

Desai specializes in child life, an undergraduate program that trains students to work with seriously ill and hospitalized children and adolescents. She brought the camp to the region. 

“Camps for children with complex heart problems exist elsewhere in the United States,” said Desai. “I knew camp would be beneficial for children and families in our rural, underserved region as our campers are more likely to feel isolated both by rural living and by their serious health issues. Camps and family support groups are vital to successful coping for children and teens with a chronic health condition,” she said. 

Camp WholeHeart is sponsored by the Children’s Miracle Network, a fund raising program of the Vidant Medical Center. Camp volunteers included ECU students and faculty from programs in child life, nutrition and exercise and fitness, as well as staff from the James and Connie Maynard Children’s Hospital at Vidant and other community members.