Cardiac camp changes child’s outlook on heart condition
Two things changed the course of 18-year-old Bethany Gooch’s life – the diagnosis of a congenital heart defect and a week-long Cardiac Kids Camp.
At just 10 weeks old, Bethany turned blue at a family Christmas celebration.
At the hospital, the family learned their youngest daughter had three heart conditions. For the first six years of her life, Bethany couldn’t do many of the things her friends and siblings did.
“I remember when she was in kindergarten, she couldn’t go to school all day. When they would do recess, the teachers would make her sit and watch because she was still turning blue. Bethany would tell me,‘Mama, I just want to go out and run with the other kids,'” said Bethany’s mother, Serena Gooch.
That school year, Bethany had a major surgery that suddenly gave her a lot more freedom.
“She came home and said ‘I ran at recess and I beat those boys,’” Serena said. “We’ve come a long way and I’m grateful for that.”
Life changed again when Bethany was 8 years old and finally old enough to attend Le Bonheur’s Cardiac Kids Camp, an annual summer camp for children with heart conditions. The week-long camp, which started in 1998, serves about 50 children ages 8-16 each year. it’s free to families thanks to generous donors.
Cardiac Kids Camp is staffed by physicians, nurses, pharmacists, sonographers, EKG team members, respiratory therapists, child life staff and chaplains. About 10 adult congenital heart patients serve as mentors during the week of camp. There is a high staff-to-camper ratio, because for many of these children, Cardiac Kids Camp is their only opportunity to be away from home for a week.
“For some parents, they’re so afraid of something happening to their child, that this is their only break all year. it’s a well-deserved break they really need,” said Camp Director Crystal Thomas.
At camp, Bethany learned about her heart. Four hours each day is dedicated to education. doctors and nurses teach the children about anatomy, blood flow and different diagnoses. This intense time gives children more information about their hearts than they can get during a clinic visit. understanding the diagnosis can save a child’s life, Thomas said.
“My goal is for 100 percent of kids to know the scientific name of their defect, their medications and why they take them,” Thomas said. “We’ve seen teenagers go to athletic events and pass out on field. Their mom and dad may not be there. it has happened more than once with our patients. it’s so important that they can easily communicate their diagnosis and treatments to any first responder.”
The rest of each camp day is spent on self-esteem building activities and time for the kids to connect and build friendships.
“These kids have a really hard journey,” said Thomas. “It’s challenging to stay motivated and encouraged to take their medication. They have to have a great self esteem to know they’re worth taking care of. The better they take care of themselves, the better chance they will have long-term success.”
The Gooch family says camp has also given them a support system of people who really understand what they’re facing.
“We really felt alone after Bethany’s diagnosis. We had Le Bonheur, but we didn’t have a support system. Heart camp has brought families together. Not only does she have the support system, so do I,” said Serena.