During the summers in Ripley, West Virginia, about 70 kids splash in a pool. They’re as young as eight and as old as 17. They’re at summer camp, enjoying the American experience of fishing, archery, drama, and arts and crafts.
They seem like any other group of kids—except when they take off their shirts. They all have scars across their chest and scar tissue in their hearts. They are survivors of congenital heart disease.
Pediatric cardiologist Larry Rhodes has worked at the Bob Hartley’s Mountain Heart Camp since its inception 18 years ago. He helped found it with other doctors, nurses, and community members.
He wanted the children of West Virginia and the region to have a break at no cost after spending so much time in hospitals in pain and being so different from other kids.
“You can imagine being a ten-year-old, an eleven-year-old and having to take your shirt off in gym class and having a big scar,” Rhodes said. “All the kids at that camp have that same scar, so when they’re in the pool and you can see their scars they don’t stand out.”
A graduate of West Virginia University, he returned to his alma mater for most of his career, after working in Philadelphia for a decade. Some of the babies he treated in his first years are still his patients now.
It would be unusual for a pediatrician to have as many adult patients as he has—the average age is 20. But for decades most congenital heart patients didn’t make it to adulthood. And they still need someone who understands the aftereffects of coming into this world with broken hearts.
HOPE
Rhodes chose pediatrics because he likes children. They, more than most, want to leave their sickness behind them.
Watching them grow up has created a kind of codependency, he says. They still rely on him as teenagers, and while he encourages them to see doctors who treat adults, he hates to see them go.
He knew them when their lives were at their most dire. And he’s been the person who’s had their hearts in his hands.
As more of his patients have survived longer, there’s more to worry about. Like the boy who made it out of his teens and is getting sick again. Rhodes’ gut tells him that 40 may be an unlikely milestone for this patient.
But even getting to teenager-hood is difficult for these children. Years ago, a baby girl from Beckley had heart surgery but was struggling to recover.
“I remember telling her parents goodbye on a Friday afternoon because I really thought she would be dead by Monday morning,” he said.
But she’s still alive today, running and going to school.
There are kids he can’t forget.
As a fellow at Boston Children’s Hospital in the 1980s he performed a still relatively new surgery for patients who had hypoplastic left heart syndrome. It was so difficult to treat that you’re unlikely to find anyone with the condition born before 1984 who is still alive.
“All the kids at that camp have that same scar.”
At the time it was still normal for children to die after their second operation. “I had a little two-year-old that I played with the night before,” Rhodes said. “He sat there and painted his face with mashed potatoes, just handful after handful rubbing it on his face … and I was just sitting there watching and laughing. Well, he was dead within 24 hours.”
THE PLACE I BELONG
In 1989, doctors started a new procedure that used catheters to end abnormal heart rhythms. When successful, it saved patients years of taking medications—that sometimes didn’t even work— and avoided sending them to the hospital five or six times a year.
By 1991, Rhodes and Dr. Stan Schmidt were using the technique to treat tachycardia at WVU. It had been expensive to acquire the equipment, and it was unusual for a place the size of Ruby Memorial Hospital to offer such a new treatment so quickly.
It’s that attention to patient care that Rhodes most appreciates about his workplace.
Because WVU Children’s Hospital does not stand separately from the rest of the hospital, he’s able to collaborate with doctors who are treating adults. Together, they navigate treating adults who have childhood diseases.
And he and some of his colleagues still travel to patients, hosting cardiology clinics in Martinsburg, Huntington, Charleston, Lewisburg, Parkersburg, Beckley, and Princeton so that it’s the doctors and not their 40 or so patients who are driving through the hills and winter weather to each clinic.
He says he really does care about his patients and strives to make their lives better. But investing his own heart in their lives gave him a realization several years ago.
“I used to think I was doing it for the kids, and then one day I realized I wasn’t,” he said.
“I was doing it for myself.”