Family Makes 700-Mile Journey to Treat Daughter’s Cerebral Palsy

When her daughter Sophia was diagnosed with cerebral palsy (CP) several months after her first birthday, Susan Slinkard found herself struck by a strange feeling: relief.

Sophia had been born two months premature. There was no hint of anything wrong at the time. But as her 6-month check-up came and went, she still wasn’t sitting up.

“We were told that Sophia likely had a bit of a developmental delay. But when she was barely crawling at 14 months, we knew it was something more serious,” Slinkard says. “As much as getting the diagnosis of cerebral palsy was painful, and as much as we didn’t want to put a label on our child, the diagnosis brought us some closure. It provided answers and next steps.”

Sophia would receive care near the family’s home in Fayetteville, Arkansas, and was eventually able to walk with the assistance of a walker. Because the intervention came so early, Sophia responded well to therapy.

“It’s her normal,” Slinkard says. “But as a parent, you struggle. While Sophia could get around, it was hard for her, and it was only getting worse as she grew. We always wondered if we could be doing more.”

It was with “more” in mind that when a local provider spoke to them about touring the James R. Gage Center for Gait and Motion Analysis at Gillette Children’s Specialty Healthcare, the Slinkard family began looking into care sites outside of Arkansas.

An Out-of-State Solution

“We researched the best treatment centers for cerebral palsy in the country,” Slinkard says. “Ultimately, it came down to Gillette and a hospital in St. Louis. Our neurodevelopmental pediatrician was familiar with Gillette and strongly advised we go there because of their comprehensive, multidisciplinary approach.”

Sophia had her first appointment at Gillette in April of 2013. As Slinkard will tell you, this approach was on full display from the beginning.

“I think we saw at least six different doctors and therapists,” Slinkard says. “In that single visit, they explained more about Sophia than we had ever known. It was both strange and comforting to have that many people focused on your child.”

Among the physicians in Sophia’s first consult was Marcie Ward, MD, a pediatric rehabilitation medicine specialist.

“At Gillette we prefer to evaluate patients as a team, and that directs the way we proceed with our patients’ care,” Ward says. “Here, we treat children who have cerebral palsy every day; we know their needs well. The parents and family are an integral part of the decision process, so rather than split up a number of individual appointments, we get everyone in the same room and on the same page.”

After Sophia’s initial visit, her team put together a comprehensive treatment plan that included Botulinum Toxin and Phenol injections, serial casting, and several other treatment options that the family had not been offered in the past. Sophia’s doctors were hopeful that these procedures would mitigate Sophia’s spasticity and allow her greater ease when walking.

“They Don’t Perform Rhizotomies in Arkansas”

Removing Barriers

Following selective dorsal rhizotomy surgery, patients like Sophia undergo weeks of inpatient rehabilitation as their muscles learn to move without their former level of tightness. “During this time, we quickly see the untapped potential that the procedure can unlock,” Ward says.

“From the time Sophia was about 2 years old, she could never walk flat on her feet even with bracing,” Slinkard says. “The first time she walked flat-footed on parallel bars, I broke down and immediately started crying. Seeing her be able to do that, you can’t even imagine how that felt.”