Brave Hearts
At cardiac camp, nurses help children with heart defects learn self-care, confidence and how to just be a kid

By Karen Schmidt, RN
February 20, 2002

When 17-year-old Jay Moline of St. Louis carried the Olympic Torch last month along a portion of its journey to Salt Lake City, friends from one coast to the other cheered and clapped for the blond high schooler. With six congenital heart defects, pulmonary hypertension and only one lung, Jay owes his vitality both to medical science and to several summers of "cardiac camp."

Hundreds of children with cardiac defects revel in these special camp environments each summer, where they get a boost in their outlook, confidence and understanding of their illnesses.

Cardiac camp plays a dynamic role in physical, social and emotional growth, offering opportunities that are instrumental in the futures of many youth like Jay.

Jay's camp experience took place at Camp Bon Coeur in Lafayette, La. Like similar camps in the United States, it's a place where, despite a duffel bag full of medications and a history of frightening medical procedures, boys and girls with heart disorders enjoy new experiences, gain desperately needed self-confidence and self-esteem, and make friends with other cardiac kids, nurses and staff. Campers often become counselors, and the nurses who volunteer say it's a fulfilling part of their own lives.

Just another camper

Between 35,000 and 40,000 babies are born with heart defects each year, or eight out of 1,000 births, according to the American Heart Association.

Advancements in diagnosing and treating congenital cardiac defects have reduced the death rate to 5 percent within one year of birth, compared to 30 percent in the 1970s.

Of the 35 defects identified, ventricular septal defect (VSD) is the most commonly diagnosed. However, many children, like Jay, have a combination of cardiac problems and sometimes blood or pulmonary difficulties or chronic illnesses such as diabetes.

But when they drop their suitcases at cardiac camp, each child becomes just another camper, said Susannah Craig, executive director and program director for Camp Bon Coeur. This alone is a gift to children who have been protected, singled out, sidelined and sick much of their lives.

"Here, our kids aren't odd because of their defect; they don't stand out because of their heart problem, but because of their unique personalities," Craig said.

Being seen for their individualism rather than their medical conditions helps give campers new opportunities that most have never had. Craig said it's clear on the first day of camp each July who is new and who's been there before. Most first-timers are quiet and hesitant, but almost without fail, they're transformed into exuberant, confident children when they leave nine days later.

Craig recalled one youngster who arrived for the first time with a paralyzing fear of water. Swimming and canoeing petrified him. Bit by bit, the staff encouraged and cheered on the camper, until he stepped into the swimming pool.

"When I told his mother on the phone that her son was swimming, she was astonished," Craig said. "She said he had been so afraid of water that he wasn't able to be baptized. She cried because she was so proud and pleased for him."

On a mission

These stories are the norm for cardiac camps. Camp Bon Coeur (French for "good heart") started in 1985 when Lafayette General Medical Center, a prominent cardiovascular facility in the South, linked up with a local chapter of Mended Hearts Inc., a national support group for people with heart disease.

The camp's mission is to provide a safe summer camp environment in which children with heart defects can grow physically, intellectually, emotionally and socially, while learning lifelong coping skills.

None of that could happen without a cadre of nurses who commit their time and expertise each summer. Maria Chavez, RN, worked in the ICU at Our Lady of Lourdes Regional Medical Center in Lafayette in 1989 when the hospital sent out a call for nurses to help at Camp Bon Coeur.

"I was reluctant, because I'd mainly worked with adults, not with children," Chavez said. "But I went, and it was wonderful. When I look back at my experiences I realize how much I enjoy the pleasure of seeing the kids laughing, having fun, enjoying the camaraderie with each other. It's so rewarding; I can't tell you how good it makes me feel."

Chavez has returned every year and has served on the board of directors since 1990. She works in hyperbaric medicine at Our Lady of Lourdes; in her off-hours, she's promoting the camp, raising funds and recruiting other nurses.

Last year, Chavez appeared on TV to ask nurses to work at the camp. She also persuaded her local American Association of Critical-Care Nurses chapter to help publicize the need for camp nurses.

During each of two nine-day sessions, the camp requires a minimum of two-preferably three-nurses on site. Three nurses provide enough coverage for the various activities, such as horseback riding, swimming and canoeing, Chavez said. "That way, we can evaluate the kids' status and give first aid if needed. We want to be able to intervene early in the game if there's a problem."

Craig said sometimes she hears that nurses, even those with cardiology experience, are leery at the thought of working at a camp populated by medically challenged children.

But once nurses try it, she pointed out, they find it's not what they expected.

"Emergency situations don't happen that often," Craig said. "We've never had to use our defibrillator."

The camp also has its own crash cart, which has rarely been needed. Craig said the infrequent ER visits have been for typical camp injuries. Like most other cardiac camps, Bon Coeur is accredited by the American Camping Association, which requires meeting high standards for safety and health issues.

Even so, recruiting nurses is something that campers, counselors, board members and Craig do all year long. Nurses must have ACLS or PALS qualifications, obtain a Louisiana nursing license and be willing to volunteer their time. Some hospitals, such as Our Lady of Lourdes, sponsor nurses to work at the camp for up to a week.

A different state of mind

Although local nurses sometimes drop in to volunteer for a day, a night or even a few hours, maintaining continuity of care is a challenge. Last summer, Craig said up to 20 nurses gave their time.

Deborah Hanisch, PNP, RN, also drums up volunteers in addition to her work in pediatric cardiology at Lucile Packard Children's Hospital at Stanford. As the camp's head nurse, she's witnessed plentiful positive results among campers summer after summer.

Hanisch said the nursing work is personally beneficial because it offers her a look at a different side of pediatric care. Daily at work she sees anxious, sick and parent-dependent children admitted for procedures.

"But at camp, the kids are in an entirely different state of health and mind," she said. "They're free to be themselves. They're not patients, but simply children who happen to have a problem with their heart. This has helped me to make my approach to working with these children and their families much more holistic."

Hanisch and Chavez agree that camp is more fun than work for them. Besides applying ice and bandages, offering hugs or whacking a Wiffle ball in the annual camper-staff ball game, they teach heart class. Nurses and local pediatric cardiologists share responsibility for explaining how a healthy heart functions, what each child's defect means and how to take good care of themselves.

Getting their feet wet

For hands-on experience, children dissect a cow's heart and experiment with echo and ECG machines. The enigma of cardiac tests and vocabulary becomes much less fearsome as campers gain a new and powerful sense of control over their situation, Craig said.

Mike Zaletel, a former camper who serves as Camp Bon Coeur's program director, agrees. "Kids can ask all the questions they want in heart class and get all the answers they feel they need," he said.

Zaletel, a Cleveland resident, had his first camp experience at age 8 and returned yearly through high school. His medical history included surgery for a ventricular inversion, pulmonary stenosis, VSD and an AV block. After graduating from high school, he returned as a counselor-in-training, then became a full-fledged counselor.

He said his choice to become a special education teacher is a result of the freedom and growth he discovered during cardiac camp. "Camp was a safe place where I could try new things. I met lots of people with conditions similar to mine. Each year I went back, I tried more new things and had more confidence. The freedom of camp brought me out of my shell."

The "coming out of the shell" transformation is what Leslie Sisk witnessed in her son Payne, who first attended camp while anticipating pulmonary valve replacement surgery related to his defect, tetralogy of Fallot.

Heart class, being with kids like himself and the chance to relax about his condition drew Payne out.

"At camp, Payne opened up a lot and began to relate to the other kids who also had problems. His counselor had had open-heart surgery four times, so he could set Payne at ease about it. That gave Payne confidence and lessened his fears. Camp opened up a whole new world for him."

Now 15, the Louisiana teen-ager looks forward all year for the next camp experience, and is considering a career in nursing as an outcome of cardiac camp.

Besides learning about their hearts, Camp Bon Coeur campers wet their feet in a fund-raising class. In so doing, they learn some basics about raising money to attend camp.

Craig said the eagerness with which campers await the next summer's session shows in their willingness to raise the $1,200 camp fee and often their travel expenses. Craig spends significant time writing grants, seeking sponsors and helping families raise funds that come through hospitals, individuals and local groups such as Mended Hearts. Yet campers themselves are some of the best fund-raisers.

"A couple of our campers have raised their entire fee themselves," Craig said. "One girl went door-to-door, selling plants her mother had grown. Another boy worked with his father to talk to his dad's business contacts to raise money for camp."

Craig said no camper who is eligible for camp has been turned away yet for lack of money.

Even now kids from around the country, with all sorts of heart anomalies and defects, are counting their dollars, poring over last year's camp photos and keeping in touch with friends they've made at cardiac camp. Camp staff are assembling the volunteer roster and considering how to tempt a few more nurses to join in the fun.

A few kids might be undergoing procedures. Others, like Jay Moline, are taking hold of great opportunities that once might have seemed unattainable.

Cardiac Camps