Kids arent the only patients at Nationwide Childrens Hospital – Lancaster Eagle Gazette

Ken Gordon, The Columbus Dispatch Published 8:42 a.m. ET Dec. 28, 2019

John Cole has learned to put up with getting strange looks in the Nationwide Childrens Hospital waiting room.

Ive had some people look at me weird, because Im sitting here by myself with no kid with me, said Cole, 54. And then they call my name and I walk in.

But Ive been doing it long enough that Im 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 Childrens, as have all of his follow-up procedures, to install and replace pacemakers (He is on his 12th device).

The main reason Cole continues to be seen at Childrens into middle age is because thats 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 childrens 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 developed as an adult, rather than the much different anatomy of a repaired congenital defect.

He said doctors at Childrens 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 will help care for patients at Wexner Medical Center at Ohio State University.

But if you have been associated with the heart center at Childrens, its hard to divorce yourself away from that, Daniels said.

Sara Xhepa also has been seen at childrens 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 at the time, and she underwent three open heart surgeries at Boston Childrens 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 Childrens Hospital as part of an outreach at five regional sites. The others are in Mansfield, Zanesville, Portsmouth and Lima.

While going through a high-risk pregnancy six years ago, Daniels collaborated with Xhepas obstetrician (her daughter, A.J., now is a healthy 5-year-old).

I have never not gone to a childrens hospital, said Xhepa, who lives in Troy, a northern suburb of Dayton, with her three children. Theres always such a rapport when I go to Dayton Childrens. The little group with Dr. Daniels, theyve all watched me grow up and now theyre watching my kids grow up.

Mindful of the issues and concerns specific to its adult patients, Childrens 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, `Im an adult, and Im in a waiting room and watching cartoons and its full of childrens 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 Childrens.

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, its possible their children may stay at Childrens for the rest of their lives.

In college, I started feeling silly (about going to Childrens), 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.

kgordon@dispatch.com

@kgdispatch

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Kids arent the only patients at Nationwide Childrens Hospital - Lancaster Eagle Gazette