It’s mid-February, which means it’s probably about time that winter is rubbing me the wrong way and spring seems a bit far off. But it’s also Congenital Heart Disease Awareness month, so I’ll put away my personal feelings to talk about something more important, because I’m a pediatric cardiologist.
About Congenital Heart Disease
Congenital heart disease affects at least 1 out of 100 children born each day. While some heart defects are comparatively minor and can resolve on their own, others require cardiologists and surgeons to intervene to help. Some are life-threatening, and repeated surgery or heart transplant is the only path for those kids. But, the good news is that survival has improved remarkably in over the past generation.
Impact of Congenital Heart Disease
Children with more complex heart disease may require sophisticated medications or implanted devices, and most have the specter of their next heart procedure hanging over their heads. Younger children look at their chest and wonder why they have a scar that others don’t. Getting pulled out of school for a check-up is common, but going to see the heart doctor? Not a ton of their friends have to do that.
The heart is an emotional organ—I’ve never actually asked, but I assume CHD Awareness Month is February because of Valentine’s Day sharing the same month. But worry about heart problems is no small matter for kids who normally don’t have to understand mortality and risk at such a young age.
At Camp
At Roundup River Ranch, kids with congenital heart disease and other children with acquired heart disease have a place to spend a week not having to worry about such heavy things. The only heavy thing at Roundup is the bag of clothes they arrive with, because camp has pretty much everything else a kid with heart disease might need.
In The Depot (the medical clinic), nurses and physicians have nearly all the tools a hospital clinic would have to care for children’s hearts. We can do ECGs, though we rarely use them (the last one I did was for an adult maintenance worker having chest pain). Cardiologists are there during Heart Week, along with ER docs, pediatricians, family doctors, pharmacists, nurse practitioners, nurses… all ready to act if children need help.
But the truth is, at camp, we’re mostly there for reassurance. Regular meds get taken just like at home, but the nurses are more like counselors, and the doctors can be part of the background—unless of course a water fight breaks out, and then we have to join alongside.
Children with heart conditions often cannot attend “regular” summer camp. Medication requirements—such as those that must be taken exactly on time every day—are too strict for most camps. Some kids have risk of dangerous heart rhythms and require an AED nearby—not a “usual” camp practice. Others need to abide by certain diet or physical restrictions.
At Roundup River Ranch, none of this is a problem.
Each kid gets the medical care he or she needs. And the medical care is so automatic, and so normal to the staff and volunteers, that the medical diagnosis takes a back seat. This camp is about FUN. The rock climbing wall, boating and fishing, horseback riding, archery, crafts, occasionally “sneaking out” with their counselors to steal cookies… it all happens.
I’ve been a medical volunteer for over 10 years. I’ve been on the medical advisory committee for almost as long. There’s so little talk about heart conditions at camp, sometimes I forget that’s why we’re there. The kids do too, and that’s the magic of this place.
I once knew an adolescent named Michael who was at camp one week before he had scheduled a heart catheterization. I happened to be the one set to do the procedure. The counselors told me they overheard him talking about how scared he was. I held my tongue because I didn’t want to add to any attention about the procedure.
The next week, back in Denver, I walked into the room and sat down with Michael. I briefly reviewed the procedure we were about to perform, but then I turned my attention to Michael. “So, you were at camp last week, right?” I said. He hadn’t anticipated this change in direction, and he stared back at me without a word. “Remember the video of the doctors you saw at the end, and there was one guy in a hot dog shirt and a green tutu?”
“That was YOU!” he shouted, in the pre-op bay. “Oh my gosh!” And then he turned to his parents and talked for several minutes straight about camp. The anesthesiologist came to get him, and he told her a joke he had heard at camp. He was laughing long before he had received any of those loopy drugs you get to go to sleep. The procedure went fine. I’ve never seen more smiling before and after a procedure than that one. Camp did that.
Roundup River Ranch is one of the most amazing places I’ve ever been. My time there reminds me regularly why I take care of kids with heart defects: because I get to see them as they naturally are—children who happen to have a heart condition—but still children. And they deserve to feel like a kid. Roundup does that for them, and maybe for me too.
Meet the Expert
Jeff Darst, MD is the Associate Director of the Heart Institute at Children’s Hospital Colorado and the Medical Director of Clinical Operations. He has been a CHCO for 15 years. Jeff lives in Denver with his wife and two children, ages 8 and 4. He is also an amateur writer with a book forthcoming, and also very nearly was cast in a Coca Cola commercial that aired during the 2000 Olympics, but they picked someone who could actually act.
