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 I am a reluctant
member of a club that consists of parents who are familiar with terms
such as intubation, cusp, cardiopulmonary bypass, Lasix and PICU. We
know the meaning of these words and share the significance of them in
our lives because we have children that were born with congenital heart
defects. According to the March of Dimes, congenital heart defects are
the #1 birth defect. In the US alone, over 25,000 babies are born each
year with a congenital heart defect. That translates to 1 out of every
115 to 150 births. (To put those numbers into perspective, only 1 in
every 800 to 1,000 babies is born with Downs Syndrome.) There are
approximately one million people alive with congenital heart defects
today.
My son, Jack, was born six weeks early along with two sisters. Not only
was he a triplet, he was born with the most common cyanotic heart
defect, Tetralogy of Fallot. Tetralogy of Fallot babies ("blue babies"
or "tet babies") have four heart malformations. This results in low
oxygenation of blood which gives them a blue appearance. Tetralogy of
Fallot is treated surgically and often in two phases. A temporary shunt
operation is done in small and very blue infants, to provide adequate
blood flow to the lungs. This lets the baby grow big enough to have a
full repair. Jack had his shunt surgery when he was only six weeks old
and barely weighed 6 lbs. The complete repair is done early in life when
the baby weighs at least 20 lbs. Jack's cardiac function today is good
and he has the potential to lead a normal life, thanks to Pediatric
Cardiology Associates in Baton Rouge and Ochsner Hospital in New
Orleans.
Jack says that the best thing about having a heart defect is getting to
go to Camp Bon Coeur every summer. This summer will be his fourth summer
in a row going to camp. Camp Bon Coeur, or Camp "Good Heart", is an
accredited nonprofit residential summer camp for children with heart
defects. In 1985, Camp Bon Coeur was created by Lafayette General
Medical Center, one of the leading cardiovascular centers in the south,
and Mended Hearts, Inc., a national support group for adults with heart
defects, to give children with Congenital Heart Defects a traditional
summer camp experience. These children might not have the opportunity
other kids have to enjoy summer camp due to their health needs. This
camp gives them the chance to meet other children from across the
country who also bear the scars of growing up with a heart defect. Camp
Bon Coeur is held each July at Acadian Baptist Center in Richard,
Louisiana. This location provides spacious air-conditioned bedrooms, a
cafeteria, classrooms and a gymnasium which offers many sports-related
activities that are tailored to meet the needs of the campers. The
school grounds boast century old live oaks, a pond, a large swimming
pool, a challenge course and plenty of room for recreational activities.
 At Camp Bon Coeur, the campers not only experience the summer camp
activities that are found at other summer camps, but also get to attend
a heart class. In heart class, the nurses educate the campers about the
human heart and their own heart problems. This class also gives the
campers a chance to share their personal stories about growing up with a
heart condition. At the end of the class, the campers have the chance to
learn "hands on" by helping to dissect a cow's heart and lungs!
The Camp Bon Coeur staff is trained to deal with the physical and
emotional needs of the campers. Prior to the arrival of the campers,
staff attends five days of training. During training, staff is certified
in First Aid and CPR. The staff learns about specific heart conditions,
team building, how to meet the needs of campers, about each program, the
goals and objectives of camp and many other topics relating to the camp,
its mission, and how to best serve the children in our care. Many of the
staff, instructors and counselors in training (CITs) were campers
themselves. Each staff member brings to camp a unique perspective and
many talents, which they are willing to share. The diversity of camp
provides our staff and campers with a wonderful opportunity to get to
know about the lives, people and cultures of our nation. The
camper-to-counselor ratio is 5:1. Cardiac nurses are at camp 24 hours a
day. The camp infirmary is equipped to deal with cardiac emergencies and
includes a defibrillator. Medical professionals, including a pediatric
cardiologist and ambulance, are on alert during camp, as well. Lafayette
General Medical Center is equipped and staffed to accommodate
cardiovascular emergencies and includes a pediatric intensive care unit.
Camp is twelve days in duration and accepts campers ages 8 - 16 years
old. Dates for the 2008 session are July 21 - August 1. This summer,
Camp Bon Coeur has campers who will be traveling from St Louis,
Cleveland, California, Florida and Illinois. Camp Bon Coeur, a nonprofit
organization that relies solely on donations, seeks sponsors to help
defray the campers' tuition cost and to provide first-time campers a
full sponsorship. To sponsor a child to come to camp or to register your
own to attend camp, call the office at (318) 233-8437 or send donations
to P.O. Box 53765, Lafayette LA 70505.
Visit the Camp Bon Coeur website at
www.heartcamp.com to download registration papers or to learn
more about sponsoring a camper. The following are testimonials written
by campers...
Kelly Jane Brosch, age 15 - Chicago, IL
“Your camp has provided a place where kids with heart defects can be
normal - where everyone takes pills in the morning and everyone has
wicked scars and crazy stories. I really look forward to going to camp
this year and seeing all my old friends.”
Kaye Lewis, age 15 - Lafayette, LA
“Camp Bon Coeur has changed my life majorly because I didn’t think I
could ever feel so normal. It’s great to feel like you actually belong
somewhere, where people won’t judge you because you’re different. My
favorite camp memory would be when I first got there and everyone made
me feel welcome. I have so many memories it’s hard for me to write them
all down.”
Joe Cable, age 14 - Cleveland, OH
“I would like to go back to camp because I have lots of fun there and
there are kids at camp just like me and that’s cool. Growing up, I was
real insecure about how different I was and a lot of times I cried
because I felt like the only kid in the world like that. That was until
my mom found a paper on Camp Bon Coeur while in the waiting room when I
was having surgery. At first, I was kind of nervous, but once I got
there and saw how I wasn’t the only one, I didn’t want to leave. When I
got back and went back to school I was in fourth grade and I was showing
people my scars and for once, I wasn’t so insecure. Camp Bon Coeur
changed my life and since then it’s been changing other kids’ lives just
like mine.”
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