Summer Camp for Kids with Heart Disease

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Summer Camp for Kids with Heart Disease

Camp del Corazon founded by nurse Lisa Knight

By Daria Waszak, RN, MSN, CEN, COHN-S
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Two decades ago, Lisa Knight, RN, a cardiology nurse at UCLA Medical Center, had a young cardiac patient who refused to take off his shirt for a medical examination. He felt so uncomfortable with the surgical scars on his chest that he tried to conceal them even from his own doctor. That patient made a profound impression on Knight and the patient’s physician, UCLA Medical Center’s Kevin Shannon, M.D. “Through this child, we realized there was more to having a disease than just having surgery,” Knight says. “There was an emotional component.”

To help that patient meet others like him, Knight and Shannon tried to find a camp for children with heart disease, but learned that the nearest one was in Louisiana — not close enough. Knight and Shannon teamed up to create their own camp: Camp del Corazon (“of the heart”). Knight’s passion, nursing experience with children, and knowledge of both cardiology and camps helped to make the Catalina Island camp a reality.

NO CAMPER TURNED AWAY
Now in its 20th year, Camp del Corazon is open for three five-day sessions every August, hosting a total of about 400 campers each year. Camp del Corazon provides 24-hour medical and nursing care, so campers can spend the night away from their parents.

It provides a unique opportunity for kids to forget they even have a medical issue and focus instead on gaining confidence, forming friendships and recovering emotionally from their heart problems. The camp also offers education to families as well as other programs and services.

Thanks to the fundraising efforts of Knight and the camp’s board of directors, which includes celebrities like Tom Arnold and Joe McHale, the camp is offered at no cost to all children with heart disease aged 7 to 17. Knight says no child has ever been denied attendance and children have come to Camp del Corazon from all over the world. Some campers hail from as far away as Australia.

★★★★★

LIFE OUTSIDE THE HOSPITAL
Campers participate in activities such as swimming, nature walks, rock climbing, arts and crafts, performing skits and more. The kids have access to the Catalina beach and get to sleep in cabins. Campers are not pressured to participate in any activities and are encouraged to openly discuss their heart conditions with other campers.

“When they get in the cabin groups and meet each other, nobody is excluded,” says Kathy McCloy, RN, MSN, ACNP, who has worked at the camp since its inception in many roles, including nursing director. “There is a welcoming experience right off the block. We add in activities each day and challenge the kids. By the second or third day, the more hesitant kids are participating.”

The camp gives the children and their healthcare providers a chance to see one another in an environment outside of the hospital setting. Doctors and nurses participate in some of the activities and even put on a dance after lunch one day.

“My favorites are the kayaking and rock climbing,” McCloy says. “There are lots of kids with fear of water and heights. Not only are the activities super fun and addictive, but they help the kids become confident, happier and more outgoing.”

★★★★★

FULL-TIME MEDICAL SUPPORT
McCloy says there are 20 nurses and two physicians onsite at all times. The doctors and nurses provide medications, practice mock codes and are fully equipped with a defibrillator and code cart. There is even a helicopter on standby.

“With the advances in pediatric cardiology and surgery, these kids are very stable,” says McCloy, who also works with cardiopulmonary patients at UCLA Medical Center. “But, we are prepared for anything. We have a small infirmary that can be changed into an emergency room.”

Knight says the camp’s providers administer about 10,000 doses of medication during the camp sessions each year. A single heart transplant patient may need 13 or more medications two or three times a day that must be timed and administered effectively. “We do it in a wonderful, seamless way that deemphasizes the medical aspect,” says McCloy. “It’s about the kids and their experiences.”

Knight is impressed with how diligently and gracefully the camp’s providers distribute medications to the children in a way that doesn’t disrupt the kids’ activities. “The nurses are so fabulous,” she says. “They are all volunteers. It is a spectacular thing.”

★★★★★

A YEARLY TRADITION
One camper, R.J. Bieti, was just 10 years old the first time he attended Camp del Corazon eight years ago. “I was scared because my mom never left me with anyone for a sleepover,” he says, “but when I got there, I realized this is where I want to be.”

Bieti was born with Tetralogy of Fallot, a congenital heart condition consisting of four defects that cause abnormal blood flow through the heart. By age 7, he had already endured multiple surgeries, including two open heart surgeries.

“Before camp, he was always embarrassed of his scar,” says his mother, Michelle. “He wouldn’t even want his shirt open to show a little bit of his chest. After camp, he was going around with his shirt off or with a tank top on.”

Bieti has returned to the camp every year since then. “It helps me connect to others who go through the things that I do: doctor’s appointments and the effects of having a heart condition,” he explains. “I get to talk to and do things with people who know how I feel.”

★★★★★

WARRIOR OF THE HEART
Lisa Knight is now Camp del Corazon’s executive director, but after all these years, she still attends the camp, where she is known by her camp name, “Xena.” “It is ingrained in my being,” she says. “My job is at UCLA, but my work is at Camp del Corazon. I couldn’t imagine not doing it.”

“She has the nicest, gentlest personality, but she is really a warrior underneath,” McCloy says of Knight. “She made this camp happen — its growth — and it’s become so successful.”

Some of the most special moments for Knight come at the end of each camp session when she watches the children reunite with their parents and tell stories about the camping experience. Some children cry because they have to say goodbye to friends they know they won’t see again for a while. Campers frequently return, as Bieti has, and some later become counselors. “These kids transform, even over five days,” explains Knight. “We get letters from parents after camp saying the child has changed — they are not so hesitant to go to school. And the camp gives a little break to the parents.”

★★★★★

FULFILLING THEIR POTENTIAL
Thanks to Camp del Corazon, Bieti says he was more prepared to go on other trips. His mother was more at ease as well. She says that feeling safe with having her son at Camp del Corazon made her more open to letting him do other things. In fact, when we spoke with Bieti, he had just returned from his high school’s senior trip to Hawaii.

Camp del Corazon “prepared me because I have a little more independence,” Bieti says. “I understand my heart condition more now. Before camp, I wasn’t comfortable with it.”

“There is a perception that the kids are limited in their overall stamina,” says McCloy.  “We help them realize their potential.”  
                       
Lisa Knight, RN, BSN, a.k.a. “Xena,” is always looking for new campers and nurse volunteers. For more information, please see campdelcorazon.org.

This article is from workingnurse.com.

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