Step by Step: 8-Year-Old Boy Learns to Walk After Series of Surgeries
WAUNAKEE, Wis. - Spend five minutes talking to Christian Sylvester (pictured, on his father's lap) and it's obvious what he likes most about his dramatically improved motor function.
The Waunakee 8-year-old's newfound mobility has allowed him to join a youth flag football league and emulate the moves of his idol, Green Bay Packers quarterback Brett Favre.
"Don't tell Dr. Iskandar," says Greg Sylvester, Christian's dad, referring to UW Health surgeon Benny Iskandar, MD, who operated on Christian two years ago.
Greg Sylvester can joke now about keeping his son's surgeon in the dark about covert football forays, but for much of Christian's childhood the thought of him walking from the living room to the kitchen was outlandish - to say nothing of him joining his friends on the playground.
That it happened is a testament to the collaboration of Christian's medical team, which included three physicians and a full complement of rehabilitation specialists; the unwavering resolve of Christian's parents; and the courage of a little boy who went through more physical duress in his first five years than most people endure their entire lives.
A difficult beginning
Recalling Christian's medical history, Greg Sylvester speaks with the wary stoicism of a father who has had to get used to seeing his son in pain almost from the start of his life.
"He was born ten weeks early. We sensed something was wrong," he says in an even, unflinching voice. "He was two pounds, 10 ounces and 15 inches long. He developed a bleed, developed hydrocephalus. They did spinal taps at five weeks. That reduced the swelling in his head, but the blood adhered to the brain, which they said scarred it. He had a VP shunt at eight weeks. Then we brought him home with a heart monitor."
Greg went on to mention Christian's hernia surgery at the age of four months, after which he got involved with UW Children's Hospital's Birth-to-Three program. Deb McLeish, MD, MS, a pediatric rehabilitation medicine physician, told Greg and wife Barb about Christian's latest malady.
Christian was diagnosed with cerebral palsy (CP), a group of motor problems and physical disorders that cause uncontrolled reflex movements and muscle tightness. The resulting spasticity Christian experienced as he grew was so severe it turned his feet and legs inward, making walking near impossible.
"You don't know how bad it is at first," Greg says. "He crawled for a long time. As he got older, he could stand but not walk real well."
"It was so sad to see him struggle all the time," Barb adds.
Phenol and botox injections reduced Christian's muscle tightness, but that was a temporary solution. His medical team, which now included Drs. McLeish, Iskandar and orthopedic surgeon Kenneth Noonan, MD, began discussing a more permanent course of treatment.
The conclusion they reached was a selective dorsal rhizotomy, a surgical procedure during which Dr. Iskandar would sever or partially sever the sensory nerves that were causing his exaggerated muscle tightness by misinterpreting signals from his brain.
"We saw he did much better when he had less spasticity," Dr. McLeish says. "When we controlled the spasticity of his muscles, he made very nice progress. We felt if he had permanent elasticity, he'd be better off."
The doctors explained the benefits of the rhizotomy without sugar-coating its inherent risks, a process that Greg admits "scared the hell out of us." After numerous discussions and lengthy research, Greg and Barb jointly decided that the rhizotomy was the way they wanted to go.
"When Dr. Iskandar mentioned the rhizotomy, I was thinking, 'What? Operate on his spine? He's so young.' But by that time we were ready to try something because we wanted Christian to have as good a life as he could and to be as independent as he could be," says Barb. "But it was scary as heck to make that decision."
By all accounts the rhizotomy was a success, but for Christian, who had now reached five-and-a-half years old, the hard work was just beginning. The post-rhizotomy inpatient rehabilitation program is an arduous five-week regimen consisting of daily, three-hour sessions during which rehabilitation specialists literally have to teach him how to move.
"At this point, Christian had a different body," says Dr. McLeish. "Our goal is to help him be as energy-efficient as possible, and some of the old habits he had when he had spasticity are not efficient. We have to teach him to move all over again."
Christian gutted his way through rehab and progressed, but the degree to which his feet and legs were turned inward was still troubling. That's not uncommon, says Dr. Noonan, who estimates that 75-80 percent of children who undergo rhizotomy also need orthopedic surgery to correct residual problems.
The Sylvesters again convened with the medical team, and endorsed their suggestion of an operation that consisted of procedures that included bony osteotomies at the feet and hips as well as some tendon transfers. Dr. Noonan would cut into Christian's thigh bone and straighten his thighs and feet, and also transfer tendons in his legs that were too tight in an attempt to give Christian greater flexibility and range-of-motion.
The importance of collaboration
This treatment was a team effort, with input from both Dr. Noonan's orthopedic surgery team and the outpatient rehabilitation team at UW Health's Gait Clinic in Middleton, which provided a gait analysis before creating Christian's post-surgery rehabilitation program.
"It's by no means an autocracy. It's a team," says Dr. Noonan. "Christian gets his gait analysis, and we look at the numbers. We talk about it and work to come up with what's best for him."
More therapy followed. Jim Miedaner, a physical therapist and the rehabilitation team supervisor at the Gait Clinic, worked with Christian to develop his strength, flexibility and balance, all of which had suffered because he had been unable to run around like most children his age. The results were encouraging.
"We noticed that he was walking faster and more efficiently, and he was walking symmetrically," Miedaner says. "The quality of his gait had improved."
Like Dr. Noonan, Miedaner believes the collective input from a range of experts contributed to the success of Christian's rehabilitation. "As a therapist I appreciate (the doctors') interest and willingness to listen to our perspective," he says. "We do have better outcomes when everybody is putting that information in."
As for Greg and Barb, they're just happy to see their son get off the bus and walk up the driveway to their home after school. Though Christian's gait is more labored than that of a child who hasn't had to overcome the obstacles he has faced, the difference between now and a year or two ago is pronounced.
Last year, Barb says, Christian needed a walker to get around. But this September, when she brought the walker to him, he refused it. "He said, 'Mom I don't need that thing,'" Barb says. "It was such a cool thing to hear him say that. He doesn't want to rely on that. He wants to go, go, go."
"There are things we know he won't be able to do," Greg adds. "So we say, 'If you can't do this next year, you can be the coach. We'll find something for you.'"
Date Published: 08/02/2007