Adam Pendergrass used to trip and fall dozens of times a day. “Every pair of pants we have has holes in the knees,” says his mother, Dahlia. “But Adam falls really well. He would stand up, shake himself off and say, ‘I’m OK!’”
At preschool, Adam couldn’t sit crisscross on the floor. He walked with a crouched gait, and to climb the stairs, he had to hold the railing and lift one foot at a time. But none of this was a big deal at first. He knew he had something called cerebral palsy, but it was OK. All the kids at preschool wanted to try his braces and have their legs stretched by the teacher like Adam did. One girl devotedly helped him take off his leg braces at nap time. Adam still gave out hugs and narrated long, action-filled adventures that poured out of his imagination.
Adam’s family had been bringing him from Hartford, Conn., to Boston Children’s Hospital’s Cerebral Palsy Clinic since he was 2 and knew the hospital offered a spinal operation known as selective dorsal rhizotomy (SDR). Adam was an ideal candidate: The operation mostly benefits children with cerebral palsy and leg spasticity who can still walk independently, like Adam could.
However, Adam wasn’t mature enough yet to participate in the rigorous physical therapy that would be needed afterward. So instead, he had weekly physical therapy, hippotherapy (adaptive horseback riding), aquatherapy, gymnastics and Tae Kwon Do, plus Botox injections to relax his leg muscles every few months.
But when Adam turned 5, things were no longer OK.
“He was very angry with his legs at not being able to do things,” says Dahlia. “He started complaining of not being able to keep up with the other boys.”
In fall 2014, as Adam was starting first grade, Boston Children’s orthopedic physician Gregory Melkonian, MD, noted that Adam’s leg spasticity—tight, pulling muscles—was causing one foot to turn in. This increased the chances that his bones would deform as he grew. Like many children with cerebral palsy, Adam also had hip dysplasia. If his leg bones grew in with deformations, he would almost certainly need hip surgery and other bone and tendon surgeries later on.
On the spot, Melkonian assembled the spasticity team, including hip specialist Travis Matheney, MD, and neurosurgeon Shenandoah Robinson, MD. They explained that Adam’s troubles were likely to get worse over time and that his spasticity would cause him to slowly lose the functioning he’d worked so hard to gain.
In short, it was time to seriously consider SDR surgery. Adam was now old enough to be reasoned with, so could be coaxed to do the physical therapy afterward. Dahlia asked if surgery could be postponed until the summer of 2015, but the team urged her not to wait.
“It’s important developmentally for Adam to be able to do things,” Robinson told her. “We don’t want him forming an idea about himself that he cannot do things. He should be aiming for all the opportunities.”
Dahlia, a psychiatrist at Hartford Hospital, appreciated this point. “Adam kept saying, ‘I want the surgery because it’s going to help me, because I won’t be tripping and falling so much and I’m going to be able to run faster,’” she says.
That doesn’t mean he wasn’t worried—about having pain or not being able to walk afterward. “It was a magnified version of the worries we had ourselves,” Dahlia admits.
The road to recovery
The 4½-hour operation took place on November 20.
“The pain team would swing by three times a day after surgery,” says Dahlia. “Neurosurgery would swing by all day. I’ve never seen that much involvement. And they all talked to each other. They had a protocol, but they customized it, tweaked it according to how he was responding.”
Because SDR releases excess tone in the muscles, Adam’s spasticity was greatly reduced. But once that tightness is released, the underlying muscle weakness becomes more obvious. Adam would need to gradually regain muscle strength, so physical therapy began almost immediately.
“After surgery, he was very weak and wobbly,” Dahlia says, “but that improved really quickly.”
By the time of discharge, just four days after surgery, Adam could slowly and carefully walk with a walker. Less than two weeks later, he was back in school. He asked Dahlia to film him walking—free of the walker and without a crouch. “It was like a miracle to us,” says Dahlia.
“Dr. Robinson said, ‘these kids make a quick turnaround,’ and it was true,” Dahlia says. “I asked Adam, ‘Are you glad we did the surgery?’ And he said ‘100 percent. My legs feel like Jell-O now, or dough. I can move them around. Before, they felt like concrete or rocks.’”
Getting what you put in
A longer road was still ahead. As the physical therapist in Boston had put it, “You get what you put into it after this surgery.” That meant intensive physical therapy five days a week, working with three therapists at Connecticut Children’s Hospital near the family’s home. At first, the family bribed Adam with sweets and screen time. Later, as Adam started seeing improvements, he became eager to show his therapists and family what he could do.
Three months after SDR surgery, Adam showed his doctors in Boston what he could do: With reminders, he could walk with straight legs, and his feet faced forward. Robinson was beaming, with tears in her eyes. It meant Adam’s bones hadn’t deformed; it was just the muscles pulling tight that had altered his gait. “This is a tear-jerker moment,” Matheney told the family. “We still have to watch, but the likelihood has dropped that he will need hip dysplasia surgery.”
Adam, who turns 7 in July, can now go up and down stairs without holding on, walk with a straight gait, kneel, crouch and squat. He’s still doing physical therapy, though efforts to supplement it at home have tapered off. Instead, he’s back at gymnastics and swimming and will soon restart hippotherapy.