Surgery and Therapy Lead to Improved Quality of Life for Patient With Cerebral Palsy
Family Treats Keith No Differently, Despite Chronic Condition
Like most 12-year-old boys, Keith Johnson stays busy. He plays on his tablet, enjoys his toy cars and revels in various video games.
Unlike most 12-year-old boys, Keith has cerebral palsy. He visits Cincinnati Children’s often and receives ongoing treatment from different experts, including our CP team, audiologists (he was born deaf in his right ear), and occupational, physical and speech therapists.
But despite his many medical challenges, Keith’s family doesn’t treat him with kid gloves, or even as a typical CP patient with physical limitations.
“I never treated him any differently from my grandkids. I treated him the same, as if he didn’t have a disability,” said Tanya Johnson, who considers herself Keith's mom. While not his biological mother, she brought Keith home from the hospital and has raised him ever since, where he spends lots of time with his extended family.
"And they [the grandkids] do not treat him any differently," added Tanya. "You know little kids —they want to fight each other, hit each other, and they do it with Keith too. They don’t hold back with Keith.”
Keith and Tanya’s grandchildren, who he calls his “cousins”, basically grew up together since Tanya takes care of them most weeks from her home as a childcare provider. Rough housing is part of growing up, but she draws the line at anyone messing with Keith’s cochlear implants.
“They have fun. But they look out for Keith. And they’re all right there around the same age together,” said Tanya, noting their ages between 6 and 13 and how this has been a great benefit to Keith and his ongoing development.
“They helped him grow to what he’s doing, just by being around all the time.”
Therapy and Surgery Help Keith Become More Independent
Described as having a “mild case” of cerebral palsy, Keith still had trouble walking as an infant and it persisted as he grew older. Therapy sessions were a great help, but last year surgery was performed on his left leg and left foot to help alleviate pain and help him become more active. The results have been obvious, according to Tanya.
“He’s gotten a whole lot better. He’s moving around more. He’s more independent. I really think that Cincinnati Children’s has helped me out a whole lot, by giving me the resources to take him where I need to take him,” she said. “Like the OT, PT, speech, audiology—all of that. If it wasn’t for (Cincinnati) Children’s helping me stay on top of it, he wouldn’t be where he is today.”
James McCarthy, MD, MHCM, director of the Division of Pediatric Orthopaedic Surgery, is happy to see Keith’s continued success, describing the sixth grader as having significant limitations prior to surgery.
“He had a really difficult time getting around and even walking. Not only are things much less painful, he is more stable standing and can get around without foot pain,” said McCarthy.
Regular therapy sessions and clinic appointments will continue for Keith, as well as one more surgery down the road which Tanya decided to wait on, initially.
In Keith’s case, his mild cerebral palsy affects the left side of his body. Initial surgery on his leg and feet were successful, but at the time Tanya did not feel comfortable with a third surgery on his hand. The plan is to wait until he’s a few years older.
“They could’ve done it all at the same time – his leg and his hand, but I thought it was a little too much,” she said. “We’ll probably wait until he gets done with the ninth grade.”
Doctors did not push back or argue with Tanya’s decision, saying when Keith is ready, and she is ready, they will reopen his case and complete the surgery on his left hand.
This open dialogue with Keith’s medical team is one of the many reasons Tanya appreciates Cincinnati Children’s.
“They listen to me and I listen to them. I always ask questions when in doubt,” she said. “And it’s very convenient. The people are polite. And since he’s been going there, I know just about every department at (Cincinnati) Children’s.”
(Published September 2020)
