One Step At A Time
A Remarkable Recovery From Spastic Cerebral Palsy
BY GWENDOLYN ZEPEDA
DARIUS SONIA IS A STRONG-WILLED 7-YEAR-OLD who plans to be a quarterback someday. Until very recently, though, it was extremely difficult for him to walk on his own.
Darius was born with spastic cerebral palsy, which damaged his brain and spinal cord neurons controlling muscle movement. In effect, his nerves sent the wrong messages to his leg muscles, causing them to contract abnormally whenever he tried to move them.
At three months of age, Darius was forced to undergo therapy to learn how to do things that other children master with ease, such as rolling and crawling. Every action performed by one’s legs – walking, standing, dressing and using the bathroom – became a challenge for Darius to overcome. He did learn to walk, but only with the assistance of cumbersome leg braces.
Still, Darius found ways to do what he wanted, says Sarah Sonia, his mother. He became an expert wall-climber, for instance, one of his favorite activities, and one which required upper-body strength alone. Only occasionally did his constant physical therapy regimen leave him frustrated and tired, but those moments could be heartbreaking. “Why did I have to be born different?” he would ask his mother. “Everybody’s different,” she replied. “Everybody has something they struggle with.”
By the time he was five, Darius had worked with various types of wheeled walkers and gait trainers, as well as multiple physical and occupational therapists. One of them suggested that Darius might be a good candidate for selective dorsal rhizotomy, a neurosurgical procedure sometimes used to reduce leg spasticity in children suffering from cerebral palsy.
Thus began a long period in which Sarah visited various doctors to gauge her son’s eligibility for the surgery. Although Darius was coping reasonably well with his condition by that time, she knew that the spasticity in his leg muscles could create muscle atrophy and bone deformities over time. So Sarah determinedly pursued the possibility of surgery, meeting with a neurosurgeon that would perform the procedure. Her instinct led her to seek a second opinion, and she continued to search for an expert and advocate for Darius.
Did you know?
Cerebral palsy affects 17 million people worldwide and is the most common physical disability in childhood.
Then she met Dr. Manish Shah, a pediatric neurosurgeon recommended by several of Darius’s physical therapists. Dr. Shah is affiliated with the Children’s Memorial Hermann Hospital’s spasticity team – eight physicians and three physical therapists who specialize in treating spastic cerebral palsy. They evaluate approximately 150 patients per year for dorsal rhizotomies, of whom an average of five are deemed suitable for surgery.
Once Sarah met the spasticity team, everything changed. Dr. Shah deemed Darius a suitable candidate for the procedure, one with a high probability of recovery – within six weeks. Sarah, meanwhile, impressed with the team and its optimism about her son’s chances, scheduled the surgery for this past June.
When he heard that the procedure would mean spending six weeks of summer vacation undergoing even more physical therapy than usual, Darius reacted as any other 7-year-old might – with disappointment. But Sarah explained that surgery might offer him the chance to do things in life that would be impossible otherwise, like playing football. Darius changed his tune.
As Dr. Shah explains it, a selective dorsal rhizotomy involves uncovering one level of the lumbar spine, exposing the spinal cord and separating the dorsal roots that transmit sensations between leg muscles and the brain. Then, after dividing each dorsal root into three to five rootlets, he tests each with a probe to determine which are causing spasticity in the patient’s leg muscles. Once identified, those abnormal nerve rootlets are cut.
Dr. Shah says that immediately following the surgery, he noticed improvement in Darius’s leg muscles, as did Sarah. Darius himself, however, reacted with surprise and dismay when he first tried standing up. He couldn’t support himself in the way he was accustomed. “Why did you let them take my strength away?” he asked his mother.
Sarah describes this period as the most difficult part of her son’s recovery. She’d tried to manage Darius’s expectations as best she could, but he’d lived with muscle tension and tightness for so long, he mistook them for strength. There was simply no way to convince him that these were liabilities he needed to lose so that they might be replaced by something better.
Sarah encouraged Darius to embark on his recovery with as much determination as he’d done everything else in his life thus far. He spent the next six weeks in the hospital, working with a physical therapy team at Shriners Hospitals for Children on a daily basis. Sarah stayed with him as much as she could, and Dr. Shah visited often. Eventually, Darius’s strength returned, and with it a renewed sense of optimism.
“He is an amazing little kid,” Dr. Shah says, calling Darius “probably the most enthusiastic patient I’ve ever seen at rehabilitation.”
Now Darius is home and back to his normal routine, with a few additions: an extra therapy session per week and karate classes. In fact, he’s already won a trophy in a tournament. “I’ve seen him do things he could never do before,” says Sarah. “He’s up and down with the other kids like it’s nothing. And he does not complain.”
Looking back on their experience, she describes her son’s surgery as one of the hardest decisions she’s ever had to make. But now she knows it was the right one and feels extremely grateful.
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