When Logan was diagnosed with CHARGE Syndrome as an infant, his parents, Jenn and Richard Kile, were devastated and overwhelmed. “I remember at one point that I was just a heap on the floor, sobbing,” said Jenn.
CHARGE is an abbreviation for the common features of the disorder: coloboma, heart defects, atresia choanae (blocked nasal passage), growth retardation, genital abnormalities and ear abnormalities. The NICU nurses quietly worried that Logan would be blind, deaf and mute.
Because only one in 10,000 kids is diagnosed with CHARGE, most hospitals shuffle families from specialist to specialist, treating each condition in isolation. And that’s just how it went for Logan’s family.
When Logan turned 7 years old, they really started to struggle. “We’d been through so many things that weren’t working. Logan would be sick for weeks at a time and unable to get off the couch. He was missing school, he wasn’t growing—it felt like everything was failing. And the cycle just kept repeating,” Jenn said.
That’s when a friend suggested they contact Cincinnati Children’s. Here, the team takes a comprehensive approach to treating all of the conditions together. This is especially important with a complex genetic disorder like CHARGE.
Jenn remembers the call from Lucy Marcheschi, the nurse coordinator for what is now the CHARGE Center, like it was yesterday. “When I talked to Lucy on the phone, she cried with me,” said Jenn. “That’s when I knew we had the right team and the right people.”
Soon after the call, the Kiles traveled from their home near Columbus to Cincinnati for a series of three sinus surgeries. Those surgeries changed everything, Jenn said. “Suddenly Logan was growing and going to school and doing all these things he couldn’t do before.”
They also came for more hearing tests, even though Jenn had previously been told there was no hope for Logan’s hearing. “That’s the thing about Cincinnati Children’s,” said Jenn. “They never say never. And we keep finding new things that work for Logan.”
Dr. Choo looked at his ears and referred Logan to audiology. “I assumed we’d go to audiology just to make another appointment for another trip, but it wasn’t like that at all. They sent us up that day, tested him right then and there—and he later ended up getting fitted for BAHAs,” said Jenn. BAHA stands for Bone Anchored Hearing Aid, which is a surgically implanted device to aid with hearing loss.
Today, the CHARGE Center is the only center of its kind. Created just for families like the Kiles, The CHARGE Center can provide the help needed to negotiate both the medical and developmental challenges associated with this condition.
“When we were first starting this journey with Logan, I didn’t feel like we were connected to the right people soon enough,” said Jenn. “For us, there are so many things that have happened just by being connected to the right people.”
She’s also learned to take on that “never say never” mentality. “When we were in the NICU, the outlook was pretty bleak. The nurses told us that he’d likely never crawl, let alone walk. Now, he’s 11 and he’s overcoming all these challenges and more.”
“This isn’t as scary as it once seemed. We take things in the here and now. Logan has led us. He runs the show. And I don’t let those other things worry me,” said Jenn. “There are days when you feel frustrated and you just think that this is too hard. And then there are days where my child says, ‘Mom’ for the first time and you realize that it’s all worth it. The awesome days definitely outweigh the tough days.”