An avid weightlifter, 16-year-old Steven McDonough couldn't understand last summer why he was getting weaker and not stronger. Moreover, he was losing sensation in his arms and developing steadily worsening back pain. Suspecting that a disk was pressing on a nerve, his doctor did an MRI.
The image revealed a problem far more serious than a dislocated or ruptured disk. Steven's spinal cord bulged like a snake that has swallowed a bigger one, ballooning conspicuously from the highest part of his neck to even with his shoulders. A biopsy identified a benign, slow-growing tumor within the spinal cord, of a kind so rare—an intramedullary ependymoma—that only one or two children a year are affected.
No specialist in the vicinity of the McDonoughs' St. Louis suburb would touch it. "They'd hold the scans up to the light, put them back in the envelope, and say, 'I'm not the right guy for this,'" says John, the boy's father. Surgery was too risky, they said. Steven would almost certainly be paralyzed and have to depend on a ventilator the rest of his life.
Yet they also agreed, says Steven's father, that the outcome would be the same without surgery, or worse: The tumor would grow, and eventually it would shut down the nerves controlling Steven's ability to breathe. He received several rounds of radiation to try to shrink the mass and steroids for the swelling and pain. There was no improvement. Steven's health continued to decline.
Eager patient. Then the McDonoughs learned through a website created by parents of a girl with a spinal tumor about George Jallo, a pediatric neurosurgeon at Johns Hopkins Children's Center in Baltimore. Jallo has made the study and treatment of rare spinal cord tumors his mission. He estimates that he treats 40 percent of all U.S. pediatric spinal cord tumors and was confident that he could help Steven without paralyzing him. "When he said that, I was ready," says Steven.
The McDonoughs drove to Baltimore, and Steven had the five-hour surgery in April. Guided by a team of neurologists monitoring Steven's nervous system for signs of paralysis, Jallo sliced away the back portions of several vertebrae. With access to the fragile spinal cord, he delicately split it open with a laser, layer by layer, ever mindful that the slightest slip could paralyze or kill his young patient. Then he disintegrated the tumor with an ultrasonic device and meticulously peeled the pieces away from the spinal cord. Jallo was impressed by the size of the tumor. "Wow," he says, "it was large!" A normal spinal cord is about as wide across as a finger. Steven's spinal cord, says Jallo, was the breadth of a half dollar.
A large corps of specialists in pediatric neurology and neurosurgery give Hopkins unique resources. "We're giving them one-stop shopping," Jallo says. "If I'm not the expert, I know there's someone here who will be." That collaborative firepower has kept Benjamin Carson, director of pediatric neurosurgery, at Hopkins for decades. "Everybody knows everybody else's patients," he says. The most complex, like Steven, are evaluated in weekly meetings by a group of specialists who devise the best treatment course. "My ultimate goal is for families to go away knowing that they have received the best care available," Carson says, "and that their child is going to have the highest possible quality of life."
As he was wheeled out of surgery, Steven's worst fear was already quelled: He could wiggle his fingers and toes. "We didn't believe it until he came out of the OR," says Mary, Steven's mother. "Then he raised his arms and feet. We all just cried."
According to Jallo, Steven can look forward to a full recovery—including weightlifting—with less than a 5 percent chance the tumor will recur. "I just want to go back to my normal teenage life and start fresh," Steven, now 17, said from his bed in the pediatric intensive care unit, where he was gaining strength for the long drive home. His face was bloated from steroids, and he appeared much older than his age. He is ready to feel young again.