Determined to succeed
Jacob, right, envisions keeping up with his twin, Jeremy.
Eight-year-old Jacob Topping is determined to keep up with his twin brother, Jeremy – a feat made very difficult because cerebral palsy affects his left arm and both legs.
Despite uncooperative muscles, Jacob dreams of walking without stumbling, someday running in a marathon, and driving a train or a race car "very fast."
His parents, Kim and David Topping, are determined to clear all obstacles to Jacob's dreams. Even more, they want to make sure the ramp that currently helps him navigate the steps to his front door in suburban Poquoson is temporary.
Their shared mission is to help Jacob overcome the physical difficulties caused by a bleed in his brain that occurred before his birth and the cerebral palsy that resulted. His doctors and therapists at CHKD embrace that mission.
The collective efforts of CHKD surgeons and rehabilitation specialists are helping Jacob triumph over his personal barriers. A combination of therapies, surgeries and lots of hard work on his part has helped clear the path.
Turning the tables on CP started with botox injections into Jacob's leg muscles when he was 2 1/2 years old. "The botox works on the muscles to weaken and therefore relax muscles tightened by cerebral palsy," said Elaine Morgan, rehabilitation coordinator at CHKD. "There is usually a very good response to botox shots within a week or so. Jacob actually began walking soon after his first injection."
But the effect of botox is temporary, so Jacob received injections by the rehabilitation specialists at CHKD every few months to maintain the effect.
By the time he was about 4 years old, his doctors decided Jacob would be a very good candidate for a longer lasting solution in the form of a surgical procedure known as selective dorsal rhizotomy.
"The procedure weeds out the abnormal nerve fibers that cause the muscles of some CP patients to tighten. This often makes it possible for them to walk with confidence and balance," said CHKD physical medicine specialist Christine Thorogood. So when Dr. Thorogood recommended that Jacob undergo the rhizotomy surgery, his parents saw it as the next important step to helping Jacob realize his dreams.
In December 2004, the two-man team of pediatric neurosurgeon Joseph Dilustro and pediatric neurologist Ralph Northam began the five-hour procedure with Dr. Dilustro making a 5-inch incision along Jacob's spine so he could isolate the nerves that send messages between his legs and his brain. The surgeon carefully separated each rootlet within each nerve bundle in order to test it for normal activity.
Simultaneously, Dr. Northam used electromyography equipment to measure each nerve rootlet's response. During the meticulous procedure, abnormal nerve fibers were cut and normal ones saved.
Therapy in the days and weeks after surgery helps overcome the initial weakness, Dr. Dilustro explained. In Jacob's case, it wasn't long before he was taking normal strides.
"We were amazed at the results," Kim said. "Jacob is much more agile as a result and walks more erect. Soon after the surgery, we could see that Jacob could bend in ways he hadn't been able to before," his mother said. "He could actually sit cross-legged on the floor like the other kids at school during story time. He was very proud to be more like the other children." Sitting erect without having to use his arms to brace himself was a major achievement for Jacob.
In a second surgery this past spring, pediatric orthopedic surgeon Sheldon St. Clair operated on Jacob's ankles and fused bone in both his feet to help correct his foot position and improve his gait. His feet now are positioned normally without turning inward, and he will wear special boots for a while to keep them in place.
With the two surgeries and extensive therapy to reprogram his muscles, Jacob's mobility has steadily improved. He learned to ride a three-wheel bike soon after his rhizotomy surgery and feels more and more like one of the other kids as a result. "He actually finished a 5K walkathon last year – on his bike," Kim reported.
"After the rhizotomy surgery, a whole world opened up for Jacob, and he could do so much more than we dreamed before," Kim said. And though his second surgery this spring required casts on his lower legs that temporarily sidelined him, "We know it will take time, but we have great expectations for Jacob," his mother said.
In the meantime, he works hard with weekly visits to the physical and occupational therapists at CHKD's Health and Surgery Center at Oyster Point. He especially enjoys time in the therapy pool there to help him build strength in his legs and arms.
Children's Hospital has been a part of the Toppings' lives for eight years, and their son's future is brighter because of the care he's received and the progress he's made. "So many technologies are available now that might not have been years ago," Kim said. "CHKD has all the resources Jacob needs."
"I have a really long scar on my back," he declares. "It looks like a train track."
Jacob visualizes his future on strong sturdy legs like his twin brother. He knows he can accomplish much with a combination of efforts. "You take what you have and build on it," his mom says. "Jacob knows he has to work for it. So we try to make sure he has every opportunity along the way."
Dr. Thorogood practices with the EVMS department of rehabilitation and physical medicine at CHKD. Drs. Dilustro and St. Clair practice with CHKD's surgery group. Dr. Northam practices with Children's Specialty Group PLLC.