Summer Camp for Children With Heart Disease
by Victoria Porter
First Published 10/1/2001 © 2001 Medscape
Congenital heart defects -- ranging in severity from simple problems such as holes between chambers of the heart to very severe malformations such as complete absence of 1 or more chambers or valves -- challenge the lives of an estimated 1 million Americans. Each year, approximately 35,000 babies (8 out of every 1000 births) are born with a heart defect, making this the most common of all birth defects. The structural problem can occur even before a mother is aware of the fetus's existence. Although the etiology of these defects is usually presumed to be genetic, drug use or an infection during pregnancy can be the culprit in rare cases.
Acquired heart disease occurs much less commonly than congenital heart defects. This form of heart damage is due to infection rather than congenital defects, such as in cases of Kawasaki disease (mucocutaneous lymph node syndrome) and rheumatic fever.
There is more reason for optimism about the fate of a child with a congenital heart defect than there was in the past. A significant decrease in overall mortality has been observed over the past few decades (from about 30% in the 1960s and '70s to about 5% today). Although most children with simple heart defects enjoy a reasonable lifespan and lead fairly normal lives, exercise capacity is often limited, and developmental delays are common. Highly specialized care, extensive financial expenditures for hospital stays and community- and school-based resources, and patient/family education are essential.
Pediatric heart disease also exacts an emotional toll on afflicted children and their families. Feelings of inferiority, self-consciousness, anxiety, and negative body image have been noted in several studies of children and adolescents with congenital heart disease.[2-5] Classmates and peers do not always exhibit compassion, and in fact are inclined to make fun of those who are "different." Therefore, organized group activities can be a source of tremendous stress for these children.
Before 1987, children with congenital heart defects or acquired heart disease had a hard time finding a summer camp where they could feel a sense of belonging. Many of them avoided camp altogether -- not necessarily because of their physical limitations, but because of the emotional scars and self-consciousness that often accompany their cardiac disorders. But that year, Camp Bon Coeur, "A Rehabilitative Cardiac Camp for Children," was launched (see footnote). Just a few years later, children with heart disease were given another opportunity to attend a camp where they could interact with others like themselves in a safe and fun environment -- for free! -- at Camp del Corazon in California. The hundreds of volunteers on staff at this nonprofit camp, founded in 1995 by Kevin Shannon, MD, Medical Director, and Lisa Knight, RN, Executive Director, have made it possible to continue offering this valuable experience, at no cost to the children and their parents, for the past 7 years.
Camp del Corazon started out as a 2-person show. The idea came to Shannon and Knight while they were discussing a brochure Dr. Shannon had requested from Camp Bon Coeur for one of his patients. This boy had undergone an operation that had dramatically improved his heart function but had left a scar on his chest that made him extremely self-conscious.
Knight was moved by the realization that such a camp could make a big difference in children's lives and greatly improve their quality of life. "As medical professionals involved in the care of children, we are often witness to the effects of heart disease on the health and well-being of children." She cited physical limitations, the need for frequent treatments and medications, and a feeling of separation from their peers as the primary effects. "Merely treating heart disease is not enough; we must strive in every way to make these children feel normal and good about themselves. . . Children with heart disease often carry their emotional scars quietly, not believing that anyone could ever understand -- not Mom or Dad, and certainly not friends at school or in the neighborhood."
All fundraising efforts, invitation application forms, mailing labels, luggage tags, and nametags, etc, were generated after hours and during lunch on Dr. Shannon's office computer. Fundraising was accomplished with the help of Dr. Gerald Buckberg, Department of Thoracic and Cardiothoracic Surgery, University of California Medical Center, Los Angeles, who raised nearly half the money by calling his contacts at pharmaceutical companies. Despite these herculean efforts, more money was spent than raised. The UCLA Division of Pediatric Cardiology covered this deficit for several months.
Forty-nine children attended the first session of Camp del Corazon. They spent 3 fun-filled days on Catalina Island, 26 miles out to sea off the Pacific coast of Newport Beach, California. "It seemed we had hardly left when it was time to return," says Dr. Shannon. "I am still quite convinced I spent more time moving luggage than anything else. Yet, when we returned, it seemed every child had a wonderful time, and couldn't wait to tell their parents."
Describing her recollections of the camp's beginnings and the uncertainties she and Dr. Shannon were faced with, Knight says:
Kevin and I had no clue -- not an inkling of how to start, let alone run a residential camp. Where will it be? Who will be able to come? Where will the money come from? Were we even thinking rationally? After all, Kevin and I both have full-time positions running the Pediatric Electrophysiology Service at the UCLA Medical Center.
But something deep, deep inside us told us that if we built a special, safe place where children with heart disease could play together, they would come! We put out "feelers" . . . and one by one, the answers to the tough questions appeared! Catalina Island Camps donated the campsite, . . . donations started to arrive, and one by one, friends announced that they would love to help; and then came!
The second year of its existence, the program grew considerably: 86 children attended an expanded 5-day session, and Glenn Knight joined Camp del Corazon as CEO. In 2000, the camp was expanded to offer 2 age-specific sessions, a Teen Camp for eighth-graders and older and a Junior Camp for school-aged children up to seventh grade. The camp also instituted a counselor-in-training program and became accredited by the American Camping Association that year.
What was once a 2-person operation has now blossomed into a nonprofit corporation staffed by an executive director, medical director, treasurer, nursing director, camp director, development director, a lawyer and an accountant (both volunteers), and 4 board members, as well as the many volunteers who sign up as counselors each year. [Anyone interested in volunteering to work at the camp can download a registration form, or request one by emailing firstname.lastname@example.org.]
Activities are led by trained activity counselors and supervised by medical nurses. On-site physicians tend to the medical needs of the campers and sometimes teach or participate in the activities. The children are accompanied by their cabin counselors to 5 optional activity periods each day. They can go on a morning hike, scale the climbing wall, or play adventure games -- which emphasize teambuilding and cooperative play. Other choices include waterfront activities (kayaking, canoeing, swimming, and paddleboards), which are supervised by a certified lifeguard and 1 or 2 counselors, arts and crafts, boom ball (similar to softball, but played with a very soft ball and a big water cooler bottle instead of a bat), volleyball, archery, and court games (basketball, hockey, and tennis). The older campers (14- to 17-year-olds) can also participate in snorkeling, powerboat (tubing) activities, and golfing. Standard camp activities such as campfire stories, sing-alongs, themed barbecues, and hikes are offered in the evenings.
"We go out of our way to make the activities easy to self-restrict, in order to avoid having to tell these children they cannot do something," says Dr. Shannon. "One of the goals of camp is to let them test their limits in a safe and supportive environment."
An activity that has been especially popular among the Camp del Corazon participants is "Disco Bingo" -- the kids have to show up clad in disco attire, and dancing ensues every time someone gets bingo. Campers' parents have reported that their children plan their outfits for the next year's disco bingo way in advance.
"Just a simple activity such as swimming or hiking that we take for granted is an unbelievable experience for these children," says Glenn Knight, CEO of Camp del Corazon (and Lisa Knight's husband -- they were married at the camp in the summer of 2000). "I see it in their eyes, and smiles, as they make it to the top of the climbing wall, as they hit the ball in boom ball with a bat that they can barely lift, and run to first base out of breath."
He emphasized that many of these children did not know, until they came to Camp del Corazon, what it feels like to do these activities. And this participation has helped them to overcome some of the self-consciousness and feelings of shame they often carry around with them. In fact, one day during carnival festivities, an 11-year-old camper painted his very large, prominent surgical scars into warrior stripes across his chest.
"I think we all have the potential to rekindle the child in us, and to remember the first time we made it to the top of a wall, or ran to first base," says Glenn Knight. "And when you finally remember, you understand why we need to be here: It's so they too can experience this."
More Than Just a Good Time
Campers stay in typically rustic but comfortable wooden cabins. Each cabin has 6 bunk beds to accommodate up to 9 campers, 2 counselors, and an activity counselor or medical nurse. To accommodate the campers' medical needs, the site is equipped with a free-standing infirmary, which takes on an emergency room quality after it has been filled with all of the supplies and equipment required to ensure the health and safety of the children. All of the medications and equipment you would find on a hospital crash cart are available at Camp del Corazon. In addition, programmers are on hand to operate the more common types of devices, such as pacemakers and implantable cardioverter defibrillators.
"We are prepared to handle a variety of emergencies, up to and including cardiac arrest," says Dr. Shannon. The camp has devised an evacuation plan that can include air transport when needed. This evacuation plan had to be implemented, for the first time, this past summer. A teenager with a heart transplant had to be transported off the island because he required oxygen and had to be treated for pneumonia. It seems that he had been feeling sick when he got on the boat, but, according to Dr. Shannon, he had been so excited to go to the camp that he did not tell anyone.
Adults with congenital heart disease are also invited to volunteer at the camp, and they perform the same tasks that other volunteers do, such as processing applications and training staff members. Their presence encourages the children with heart disease to realize that, despite their problems, they have the opportunity to grow up and achieve success in their lives. Among these special volunteers are patients from the Ahmanson/UCLA Adult Congenital Heart Disease Center, a tertiary care facility that provides services to patients with congenital heart disease who reach adulthood and a major training and research facility for medical and pediatric house officers and cardiologists.
The gratitude and good feelings that are generated by Camp del Corazon are evidenced by the many letters that have been sent to the staff members over the past 7 years. Impressed by the positive effects the camping experience had on her son, one mother wrote: "Letting him go was difficult for all of us, and yet to see his natural smile when he walked off that boat will forever be an image in my mind. He seems so much more at peace with himself and his condition." And one young camper expressed her appreciation in a letter by saying: "I don't know if everyone realizes how much Camp del Corazon means to us campers. It is not only a place to meet the most amazing people but a place for us to forget our problems and know that everyone there sees us for who we are and not the person who has a heart problem and has scars."
According to Dr. Shannon, even though the camp has nearly tripled in size (there were 231 campers, 3 physicians, 17 nurses, and 54 activity and cabin counselors at the 2001 summer session), it is still "a program about children, for the children, and about teaching children with heart disease that they are not alone, and that strength derives from overcoming obstacles." His goal for the future of Camp del Corazon, simply put, is "To make this opportunity available to anyone who might benefit from it. This includes the doctors, nurses, camp staff, and adults with congenital heart disease who have volunteered as well as the children who attend, for we all walk away with a better understanding of who we are, what we do, and the importance of understanding how others see the world."
Lisa Knight echoes this sentiment. "Our dream? Simply to make Camp del Corazon available to anyone who might benefit."
How to Make a Donation to Camp del Corazon
Donations and support are needed from individuals, corporations, and organizations dedicated to overcoming childhood heart disease. A donor form is available from Camp del Corazon, Inc., or can be downloaded from their Web site. All volunteer staff members must fill out application and reference forms before being accepted into the program, which must be submitted by June 30 in order for a staff position to be ensured for that summer. Mandatory staff training is held each August.
Camp del Corazon has set a fundraising goal of $300,000 for 2001, in order to have a cushion for the future, especially in the event that demand for the program grows and more sessions are added. They also need additional volunteers to help with mailings, application processing, and other administrative tasks.
Check the organization's Web site to find out about upcoming fundraising events in your area. Past events that have successfully raised money for Camp del Corazon include "Have a Heart Benefit" in Minneapolis, Minnesota, "Valentine's Day Heart Fair" at the UCLA Medical Center, and "Growing Up With Heart Disease in the New Millennium" at Universal City, California.
Created in 1985 through the joint efforts of Lafayette General Medical Center in Lafayette, Louisiana, and Mended Hearts, Inc., Camp Bon Coeur relies entirely on monetary and in-kind contributions for its operation. It costs $900 for 8- to 11-year-olds to attend a 9-day session, and $1250 for 12- to 16-year-olds to attend a 12-day session; both sessions are held in July at the historic Academy of the Sacred Heart in Grand Couteau, Louisiana.
About the Author
Victoria Porter is a Copy Editor at Medscape.