Akron Children’s Hospital program helps parents through tough times

Judy A. Doyle knows the frightening, helpless feeling that takes over the mind, body and soul of a parent when you learn that your child has a serious illness.

“When your kid is sick, everything else goes out the window,” says Doyle. “It doesn’t matter how much you know or don’t know about it. It becomes so hard to navigate all the stuff that you now have to do.”

Doyle has helped make that ordeal a little bit more bearable for parents at Akron Children’s Hospital through the Parent Mentor Program. When parents bring their children to the hospital, they now have the ability to connect with parents of children facing similar medical conditions.

“We don’t give medical advice or make comments about this doctor or that doctor or tell you that a certain medicine will solve the problem,” Doyle says. “It’s matching parents with other parents who are going through a similar situation with their child.”

Opening the door

The Parent Mentor Program at Akron Children’s has taken a number of twists and turns over the years. Doyle has played a key role in its development as has Joyce Swords. As mothers with children who had been diagnosed with serious medical conditions, their paths would cross in Akron.

Doyle’s third child, a boy who is now 17, was diagnosed at the age of 3 with cardiofaciocutaneous syndrome. It’s a rare genetic condition that typically affects the heart, facial features and skin. It’s so rare that it only affects about 300 children worldwide, Doyle says.

In 2001, Doyle met Swords, acting coordinator of the hospital’s brand new parent mentor program. In 1993, Swords’ 11-year-old daughter developed leukemia. She began treatment, but soon relapsed and eventually traveled to Cincinnati for a bone marrow transplant, a treatment that wasn’t available to her at that time in Akron.

“Cincinnati had a very open program for parents and families, especially if they were going through the transplant process,” Doyle says. “They would let you talk to a parent who was two weeks ahead of you. In fact, they would encourage you to talk to other parents. This was 1993. At the time, hospitals didn’t encourage people to talk to each other.”

Swords talked about how beneficial the program had been. Unfortunately, her daughter’s condition worsened and she spent more than 150 days at Akron Children’s before losing her battle with leukemia in 1994.

“So Joyce wrote Mr. (William) Considine, our CEO, and she said, ‘You guys did such a great job caring for Angie. I feel like I’ve lost my job because of the relationships I had at Children’s and all of the care that she got there. But I think there are things you could do better.’”

Swords mentioned that the first piece of mail she got after her daughter’s death was a bill from the hospital.

“That was something that was corrected,” Doyle says. “If you lose a child, that’s not going to be the first piece of mail you get.”

Someone who understands

The Parent Mentor Program still took time to develop. Swords was an employee at ComDoc and with the support of Riley Lochridge, the company’s CEO at the time and a man who was very involved in supporting Akron Children’s, she became a loaned executive at the hospital.

She would work 20 hours at ComDoc and 20 hours at the hospital laying the groundwork for the mentor program through the formation of a parent advisory council.

In 2001, Swords met Doyle, built a friendship and eventually asked if she would be willing to take the next step and build a parent mentor program.

“I got hired in 2001 to be the first paid parent person at Akron Children’s and I started building the program,” says Doyle, who now serves as coordinator for the program.

Over the past 15 years, Doyle has built a network of 184 parent mentors. So if you have a child with chronic ear infections, asthma, leukemia or one of dozens of different medical conditions, you can connect with another parent facing a similar situation and share what you’re going through with someone who understands.

“Some people are leery because they think, ‘I can’t add another person into the mix. I already have to tell my story 15 times to the different doctors,’” Doyle says. “They don’t realize that you don’t have to tell your story to a mentor because they already know it.”

The Parent Mentor Program has become easy to access through a page on the website that allows you to search by condition and learn about mentors before you make the connection.

In addition, the parent mentors have taken on a more prominent role by joining committees and helping the hospital provide the best service it can to all of its patients. And Doyle has used philanthropic funds the hospital receives to take a coffee cart around the hospital to deliver coffee and doughnuts to parents who often need a pick-me-up.

“It’s that human connection,” Doyle says. “I want the staff to see all the parent mentors and parent advisers and think, ‘Oh, that’s Judy. She’s one of our parents. She’s awesome. I would let any parent talk to her.’”

Doyle’s son is also doing pretty well these days. He still has his share of medical challenges, but he started high school this year and got a golf cart to drive around the yard.

“He’s a funny, happy kid who I wouldn’t trade for the world,” she says.