In some cases, kids aren’t the only patients at children’s hospitals
John Cole has learned to put up with getting strange looks in the Nationwide Children’s Hospital waiting room.
“I’ve had some people look at me weird, because I’m sitting here by myself with no kid with me,” said Cole, 54. “And then they call my name and I walk in.
“But I’ve been doing it long enough that I’m used to it by now.”
The Westerville resident was born with a ventricular septal defect — basically, a hole in his heart.
He underwent his first surgery at 3 months and then at age 8, in 1973, had another, more major, procedure done.
Both surgeries were performed at Children’s, as have all of his follow-up procedures, to install and replace pacemakers (He is on his 12th device.)
The main reason that Cole continues to be seen at Nationwide Children’s into middle age is because that’s where doctors have the most expertise in congenital heart defects.
In fact, the hospital has an Adolescent and Adult Congenital Heart Disease Program (ACHD) that treats about 2,500 patients a year.
“If you are born with (heart defects), you have it your whole life,” said Dr. Curt Daniels, director of the ACHD program. “We can correct the problem, but not cure it. Not many things stay with you your entire life; this is unique.
“The difference between this and other chronic illnesses is that the most expertise comes from children’s hospitals — the physicians there deal with these problems and understand these problems best.”
Daniels said cardiologists at “adult” hospitals are more accustomed to treating patients with “acquired” heart disease that develops as an adult, rather than the much different anatomy of a repaired congenital defect.
He said doctors at Nationwide also treat adults with several other chronic childhood diseases, such as cystic fibrosis or sickle-cell anemia, but that congenital heart defects make up by far the largest segment of their adult-patient population.
Because some adults have other complications (such as diabetes or high blood pressure), it sometimes makes sense for congenital heart defect patients to be seen at an adult hospital, Daniels said.
For that reason, the ACHD program has six cardiologists and a team of support staffers who also help care for patients at Wexner Medical Center at Ohio State University.
“But if you have been associated with the heart center at Children’s, it’s hard to divorce yourself away from that,” Daniels said.
Sara Xhepa also has been seen at children’s hospitals her entire life.
The 33-year-old was born with hypoplastic left heart syndrome, meaning the left side of her heart was underdeveloped.
Her family lived in Virginia when she was born, and she underwent three open heart surgeries at Boston
Children’s Hospital before she was 6.
After moving to the Dayton area in 2001 as a teen, she has been seen by Daniels and the ACHD staff at Dayton Children’s Hospital as part of an outreach at five regional sites. The others are in Mansfield, Zanesville, Portsmouth and Lima.
While Xhepa was going through a high-risk pregnancy six years ago, Daniels collaborated with her obstetrician. Her daughter, A.J., is now a healthy 5-year-old.
“I have never not gone to a children’s hospital,” said Xhepa, who lives in Troy, a northern suburb of Dayton, with her three children. “There’s always such a rapport when I go to Dayton Children’s. The little group with Dr. Daniels, they’ve all watched me grow up and now they’re watching my kids grow up.”
Mindful of the issues and concerns specific to its adult patients, Nationwide employs a social worker, Alex Giraldo, to deal with those in the ACHD program.
Giraldo said those issues can include transportation, insurance, financial arrangements, mental-health assessments and guardianship.
“I hear people say, ‘I’m an adult, and I’m in a waiting room and watching cartoons and it’s full of children’s magazines,’” Giraldo said. “But what offsets that awkwardness is the level of care provided here.”
Cole said he prefers the attentive and friendly staff at Nationwide Children’s.
Not only does he continue to be treated there, he also is a longtime volunteer, visiting parents of young patients to help answer their questions.
He tells them that, like him, it’s possible their children might stay at Children’s for the rest of their lives.
“In college, I started feeling silly (about going to Children’s),” Cole said. “I asked my cardiologist, ‘Should I transfer to another place?’ and she said, ‘No, just keep coming here.’
“I was good with that.”