Amy Pratt struggled for years to get the support and care her three children with CHARGE Syndrome needed. With her husband, Jason, staying home in Texas to work and provide for the family, Amy drives thousands of miles each year to Cincinnati Children’s, where she’s finally found the help their kids need in our one-of-a-kind CHARGE Center.
After years of searching, it only took a few minutes for Amy Pratt to realize Cincinnati Children’s was the hospital she needed for her children – no matter the driving distance. In fact, it only took one phone call.
During her initial conversation with Lucy Marcheschi, nurse coordinator with the CHARGE Center, Amy described the difficulties her family has endured at other hospitals, including misdiagnoses and frequent visits with few answers. But what she didn’t need to describe was CHARGE syndrome or her children’s daily struggles.
“I found myself pleasantly surprised because I wasn’t having to explain everything to her. I didn’t have to do all that,” Amy said. "It was just amazing. [Lucy] is an angel on Earth.”
Parents' Burden Eased
According to Marcheschi, it’s just part of her job. At the CHARGE Center, the goal is to provide a trusted environment for parents like Amy and Jason so they feel confident in the best outcome for their individual child. As a nurse, she knows the parents’ and the children’s struggles all too well.
“These kids struggle to survive, especially in the first years of life. This family has a full-time job just getting the kids to the doctors’ visits. Couple the physical challenges with the developmental and emotional challenges, and everyday life can be overwhelming. The Cincinnati CHARGE Center is well-suited to prioritize and streamline care to maximize individual outcomes,” she said.
With three of Amy’s five kids diagnosed with CHARGE, she juggles medications, therapy appointments and hospital visits on a near-daily basis. All of the children – who range in age from 7 to 13 years – are home-schooled, partially because of their various disabilities, but mostly because they are not physically healthy enough to handle a school environment.
“Finding a way to clone myself on a regular basis is something I wish for more and more,” she said.
But since arriving here for their first visit in July 2017, Amy said her burden has eased.
“Cincinnati Children’s has moved mountains for me,” she said. “The CHARGE Center. The Child Life Center. The way they go through the programs to help the kids who really struggle. It’s nice to know there’s a facility that does that. Other hospitals and physicians have a lot to learn. And I don’t say that lightly.”
Amy is all-too familiar with the inside of hospitals. From Houston to Boston, she and her children are well-traveled, but only in Cincinnati did she find the collaborative approach of the CHARGE Center and their hard-working staff.
“They weren’t talking to one another,” said Amy, recalling other hospitals’ staff. “I was the care coordinator. I had to tell the pulmonary and ENT docs what the heart doc had said. I don’t know why. It didn’t seem to matter what they were doing in other [areas of the hospital]. And then to come up here and everyone talks to one another. It was a game changer.”
Unique Care for Each Patient
Amy is proud to say her three boys with CHARGE Syndrome – Spencer, Quinten and Bryton – are each getting the individual attention and unique care plans they deserve.
“I think way too often other doctors get caught up in the idea of checking boxes. But they forget no one is the exact same. Cincinnati Children’s does a great job of looking at them as individuals,” said Amy. “They each have their own issues and [hospital staff] respect and address them accordingly. I drive 1,800 miles to come here three to four times a year. That should say something.”
Amy recently brought her children up to Cincinnati for various clinic visits and to attend the 2018 CHARGE Conference. She said it was great to be in a room full of parents and to talk with providers about opening up new avenues for her children and her husband, Jason.
“Seeing the work that is going into understanding CHARGE better and to be able and help not only kids, but people with CHARGE, was very reassuring,” said Amy, adding it’s particularly important for her, given Jason was recently diagnosed with CHARGE, as well.
And while the drive can be daunting at times, the good news is that the care received at Cincinnati Children’s has cut down on the number of doctor visits back home and allowed them to spend more time as a family.
“Because the docs [back home] didn’t understand what was going on, we were doing six to eight week follow-ups. We were in the office all the time,” said Amy. “But now, they are getting to actually be kids. It’s amazing to be able to plan family vacations and enjoy different things.
“I wish someone had told me sooner about Cincinnati Children’s. To think what my boys wouldn’t have had to go through before. What we as a family wouldn’t have had to go through. Cincinnati Children’s has stepped up and is helping me when no one else could.”