Doctors in the Cerebral Palsy Program and Surgical Spasticity Clinic help give 4-year-old the chance to to run, jump, play – and ride a bike
When William and Michelle Watters adopted their son, Hunter, they were unaware that he had any medical conditions.
Hunter, now 4, had struggled to reach early developmental milestones like sitting up on his own, but this was assumed to be a likely side effect of being born premature. So at 9 months old, he began physical therapy and occupational therapy through First Steps – a Kentucky-based early intervention system that provides services to children with developmental disabilities.
After 10 months in the program, however, questions remained concerning both his physical development and mobility. Hunter was sent to Cincinnati Children’s for evaluation by our neurology team and soon was diagnosed at 19 months old with spastic cerebral palsy (CP).
It was during initial visits to our CP Program when the Watters family first heard about selective dorsal rhizotomy (SDR) surgery as a possible treatment option. Hunter, who was found to have a medium to severe level of spasticity impacting his posture, walking pattern and efficiency, was considered an ideal candidate for the procedure, so they began researching SDR online and an appointment was made with our multi-specialty Surgical Spasticity Clinic.
Deciding Yes on Selective Dorsal Rhizotomy (SDR)
Learning more about the procedure and meeting the doctors – Charles B. Stevenson, MD, a pediatric neurosurgeon, and Paola Maria L. Mendoza-Sengco, MD, a pediatric physical medicine and rehabilitation physician – helped solidify the family’s decision.
The SDR, explained Stevenson, is a complex — but safe — procedure that reduces spasticity in the legs and allows patients like Hunter to continue to improve upon their walking while working toward independent mobility.
“He had significant scissoring while walking, and very abnormal reflexes indicative of a lot of unbridled spasticity,” said Stevenson.
“Scissoring” occurs when the muscles on the inner half of each thigh pull the leg in the opposite direction. When Hunter put his left foot out in front, it would get pulled to the right and when he tried to take a step with his right foot, it would get pulled to the left.
“Your two legs cross over one another, resembling a pair of scissors,” said Stevenson.
In addition, Hunter also suffered from tight hamstrings. So tight they prevented his legs from fully extending. His calf muscles were severely affected, as well.
“When (the calf muscles) are tight, these children are often unable to get off their tippy toes. [Hunter] was always on them,” said Stevenson. “When he would walk, his legs would cross over and he was always on his toes. And that makes it very hard to get anywhere in a productive fashion. These are very common gait abnormalities seen in many individuals with spastic CP.”
Getting their son the help he needed was their top priority, so the Watters decided to move forward with the surgery after talking with Stevenson and Mendoza-Sengco in a comprehensive counseling session in the Surgical Spasticity Clinic.
“He was so personable. He went over it step by step on what to expect,” said Michelle, recalling their initial, in-clinic SDR discussions. “We decided to do it because we wanted to give [Hunter] the most amount of time to live — with his maximum potential — for as long as possible.”
Soon afterwards Hunter's SDR was performed at Cincinnati Children’s.
“We went in and saw him right away. And he moved his leg. He actually pulled his leg up. My husband and I were in tears,” said Michelle, recalling the happy moment. “We could notice the changes immediately. It was just fascinating.”
Hunter’s recovery did prove to be fast, but still required time and effort. After the procedure, a protocol of intensive outpatient physical therapy comprised of up to 160 sessions in that first year is recommended to maximize the functional benefits of the surgery. Patients must re-learn certain muscle movements, improve range of motion and flexibility in their legs, build new strength, and improve coordination in their legs. Depending on how quickly they progress, it can take anywhere from a couple weeks to a couple months before patients begin walking following SDR.
“There are so many variables and everyone recovers at their own pace, but Hunter did begin walking relatively quickly as most children do,” said Stevenson. “Between stretching to improve the range of motion in their legs, and building strength, patients are able to progressively improve their balance and ability to take steps more efficiently.”
One Year Following SDR
Now a year removed from the SDR, Hunter is doing well. He continues with regular physical therapy but has graduated from speech therapy.
“He’s very verbal,” said Michelle. “Everyone always jokes that he’s an old soul the way he communicates with adults. It’s not like interacting with a typical 4-year-old.”
Hunter's walking skills have improved, too. He still uses a wheelchair for long distances when he’s out in the community, but he is more active and is able to walk around independently with the aid of of a crocodile gait trainer and his braces. He has done so well that he has now “graduated” from the Spasticity Clinic after achieving all the necessary goals.
“We followed him closely for the first year to make sure he was on track, and he did great with that. But that doesn’t mean it’s the end of the road. Patients continue to make functional gains following SDR as the months and years go by. Hunter will continue to improve his walking the more he works at it,” said Stevenson.
Today, Hunter continues with physical therapy and is seen regularly in the comprehensive CP clinic. He is more active than ever. He even rides a bike – just like any other little boy, said Michelle.
“We’ve been ecstatic with his progress,” she adds. “We just got him a bicycle with training wheels. Bought it at Target like any other kid. The ultimate goal is [for Hunter] to live independently and live a typical, normal life.”
(Published January 2021)