What Will the X-ray Say?

It’s a big week for Joey and his family

Rebecca is understandably nervous.

In less than a week, she will travel the 29 miles from her St. Peters, Missouri, home with her 13-year-old son, Joey, to Shriners Hospitals for Children — St. Louis for his yearly follow-up. Joey will leave his mom in the waiting room, and a radiology technician will take yet another X-ray of his left leg. 

And then they will wait.

“It’s always an anxious time because you never know what that X-ray is going to show and what it will mean for our future,” she said.

The fact that there is a left leg to take an X-ray of is a testament to the care Joey has received at the St. Louis Shriners Hospital since he was 7 months old.

‘You should amputate’

It was a quiet Saturday morning of family time as Joey, 6 months old at the time, pulled himself up to a standing position using a table. Rebecca held him by his hips to steady him.

And then he collapsed, screaming in pain. Rebecca and her husband, Kevin, looked their child over.

“Any time we got near his leg, he started screaming more,” Rebecca said. Visits to two emergency rooms that day provided no answers, and the family was forced to wait until Monday to see an orthopaedist. After examining Joey, he gave the family a heart-wrenching diagnosis.

“He said, ‘This is the worst case of pseudarthrosis I’ve ever seen. You should amputate,’” she said.

Pseudarthrosis is a condition in the lower leg in which the tibia is bowed and fractures. Over time, it can lead to complications such as limb-length differences, joint stiffness and more fractures.

“I was terrified. I was devastated,” she said. “I was like, ‘Can’t we try something?’ I didn’t want to accept it at all.”

So she didn’t.

‘Dr. Google’

She took her baby boy home and, as she said, started using “Dr. Google” to find alternatives to amputation. The search-engine physician returned the name of Perry Schoenecker, M.D., at Shriners Hospitals for Children — St. Louis. Less than a month later, Rebecca, Joey and her then-2-year-old daughter, Isabella, walked through the doors of the hospital for the first time.

“Dr. Schoenecker immediately had a plan that didn’t involve amputation,” she said. “He gave us hope.”

The road ahead would be difficult, the physician told her, but amputation was not a certainty. By the time the family walked out of the hospital that day, Joey had a better-fitting brace than the one he was initially given and plans for a major surgery when his bones were strong enough to support the hardware Dr. Schoenecker would need to implant to stabilize his leg.

That was amazing enough, Rebecca said, but there was more to Shriners Hospital that impressed her on that first visit.

“Everyone was warm and welcoming,” she said. “The nurse found ways to connect with Joey. She kept Isabella entertained. They cared about us as a whole family.”

Growth through adversity

Joey underwent that first surgery shortly after his first birthday. He’s had numerous surgeries since then. How many?

“Oh gosh. Let me think. How about ‘a lot?’” Rebecca said. “I’ve lost count.”

With each surgery, Joey’s once-condemned leg gained structure and strength. Now, as a 13-year-old boy with a love of math, video games and soccer, Joey has appreciation for the care he has received at Shriners Hospital since before he can even remember.

“I feel like I wouldn’t be walking if I didn’t get this kind of care,” he said

That doesn’t mean it has been easy. Besides the physical pain from the surgeries, there has been the emotional pain from peers who see a leg brace and think: “Different.”

“Some kids just wouldn’t want to be my friend,” he said. “That was hard.”

But the adversity has helped shape Joey’s character and made him a person adults admire.

“Teachers say he is the most empathetic kid in class,” Rebecca said. “When someone is sad or not feeling good, he helps them. He’ll be silly around them just to get them to laugh. He knows what it was that made him feel better when he was in pain or sad, and he uses his own life experiences to make other people feel better.”

A bright future

Joey shows more than just amazing empathy in school. He’s also, well, pretty brilliant. As a seventh-grader, he showed so much intelligence that he was asked to take the ACT, which earned him an invite to a prestigious boarding school – an opportunity his parents have declined for now. Now as an eighth-grader, he’s taking physical science and German classes that will earn him high school credits.

He continues to wear a brace and will at least until he stops growing, though it appears no more surgeries will be necessary. He has a goal for the future, a goal he hopes the X-rays this coming week will help him realize.

“I always hope that one day it will just be healed and I won’t have to wear this brace,” he said. “That’s my hope.”