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Children and teens with congenital heart defects enjoyed an Olympics theme during Camp WholeHeart, a program brought to the area by Priti Desai, ECU assistant professor in Child Development and Family Relations (Contributed photo).

Camp WholeHeart Benefits Campers and Counselors

By Peggy Novotny

Rainy weather could not dampen the spirits of the 24 children and teens who eagerly awaited the chance to get together, have fun, and enjoy a weekend in the company of those with similar life experiences.

As the rain fell during the weekend of Oct. 17-19 on Camp Don Lee in Arapahoe, N.C., campers didn’t notice it amid campfire chatter, Olympic-style relay races, and a much anticipated annual talent show.

This was the fourth year for Camp WholeHeart, a weekend experience for children and teens with complex congenital heart defects. Though the campers are from several eastern North Carolina counties and they see each other infrequently, camp has helped many develop friendships that blossom again with the first camp hug.

Camp WholeHeart was brought to the region by Dr. Priti Desai, assistant professor in ECU’s Department of Child Development and Family Relations. Desai said, “Camps for children with complex heart problems exist elsewhere in the U.S.

“I knew camp would be beneficial for children and families in our rural and underserved region as our campers are more likely to feel isolated both by rural living and by their serious health issues,” she said.

Desai said the presence of serious congenital heart defects often results in enormous emotional and financial strain on families.

“Camps and family support groups are vital to successful coping for children and teens with a chronic health condition,” she said. “ Many of the parents are as excited about camp as the campers.”

Rhonda Jones, mother of a camper, stated in a letter, “In just one weekend Jonathan learned what I’ve been trying to teach him for 11 years—he’s not alone. For the first time in his life he was able to take off his shirt without someone looking at his chest and asking him, ‘Oh, what happened?’”

According to the American Heart Association, of 1,000 births, eight babies will have some form of congenital heart disorder. Nearly twice as many children die from congenital heart disease in the United States each year as die from all forms of childhood cancers combined. Camp WholeHeart campers have a wide variety of heart defects. An example is tricuspid atresia where the child is completely missing the tricuspid valve, which eventually leads to a hypoplastic or an absence of the right ventricle. Many of the children have had multiple open heart surgeries or may have suffered a stroke. Many have experienced extended hospital stays. Some have pacemakers and are taking medication. For them, summer camps that healthy children enjoy or sustained physical activity and intensive sports programs are unlikely. Some children with complex lesions may additionally face developmental disorders and learning difficulties.

Desai credits the Children’s Miracle Network of the Pitt Memorial Hospital Foundation for funding the camp. “We started the camp four years ago through collaboration with pediatric cardiologists and nurses at the Brody School of Medicine and Pitt County Memorial Hospital,” she said. “Drs. David Hannon and Dennis Steed steadfastly support the camp and have served as camp doctors for the entire weekend over the years,” she said.

Desai explained that many of the campers are Hannon and Steed’s patients. “But at camp they get to see the whole child,” she said, “and that gives them further insight into the full potential of the children.”

At the same time, Desai explained, the children get to see their doctors wearing jeans and T-shirts and tennis shoes, just having fun. “This can help relieve the anxiety children experience in a traditional health care setting,” she said.

This year the campers enjoyed an Olympics theme. They formed teams representing participating countries and throughout the week, their arts and crafts, games and activities reflected the theme.

“We ate foods from other countries; we were visited by Chinese dancers; and we created our own endearing Chinese dragon, Moo-shu, who entertained family members at closing ceremonies,” Desai said.

Community volunteers such as Chandra Green enrich the camping experience, Desai said. And ECU students from all disciplines have the opportunity to serve as camp counselors. Twenty students this year from child life, nutrition, English education, bio mechanics and other disciplines volunteered to help the children feel safe and supported.

The camps help ECU students develop leadership potential, while broadening their exposure to diverse cultures and situations. “The exposure is as valuable for the counselors as it is for the campers, since it broadens understanding and acceptance of other people around the world,” Desai said. “Most of all Camp WholeHeart gives us the incredible opportunity to applaud the champion spirit of each camper.”

This page originally appeared in the Nov. 3, 2008 issue of Pieces of Eight. Complete issue is archived at