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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.
Contact Karen Schmidt, RN at krnschmidt@earthlink.net
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