Harper's Story: Spina Bifida
Patient Story Highlights
- Harper, a two-year-old diagnosed with spina bifida, has defied the odds by learning to walk and stand unassisted through intense physical therapy.
- Harper's family moved to the Tampa Bay area to get the right therapy for her, and committed to an intense regimen of physical and occupational therapy several times a week at Johns Hopkins All Children's Child Development and Rehabilitation Center.
- Harper's therapy was focused on the whole child, and her sessions were made full of fun, even as they were doing intense work.
Two-year-old Harper brings one little baby finger up to her pursed lips and leans in, conspiratorially, to her therapist.
“Shhhh! Baby sleeping…” she says in a hushed tone, her blond locks framing bright eyes and cherub cheeks.
“OK!” whispers Michelle Schultz, P.T., D.P.T., taking the hint. She knows there will be a payoff inside of a minute. Sure enough, Harper soon decides nap time is over for the baby doll they’re playing with on the physical therapy floor of Johns Hopkins All Children’s Child Development and Rehabilitation Center.
As Harper toddles, unassisted, across the floor in her purple unicorn shoes to retrieve the doll—it’s easy to overlook that this is something close to a miracle.
Harper was diagnosed in utero with spina bifida. Spina bifida means “open spine.” It’s a birth defect where the backbone and spinal cord don’t form properly, and it can lead to a range of issues including hydrocephalus, learning disabilities, and paralysis. Harper has myelomeningocele, the most serious type of spina bifida.
“Being how high up it is on her thoracic spine, typically kids with that diagnosis … they don’t sit, they don’t crawl, they don’t stand. They don’t walk,” Schultz says.
But Harper is not typical.
She has endured immense challenges in her short life so far, including multiple surgeries, starting with fetoscopic surgery in Houston before she had even entered the world. But the surgeries are not a cure for spina bifida. There isn’t one.
About a year ago, the family was transferred from Texas to the Tampa Bay area so that Harper’s mom, Erica, could take an Army position at MacDill Air Force Base. She knew Harper desperately needed the right therapy to set her up for the very best future.
“We had heard about Johns Hopkins All Children’s Rehabilitation Center, and we knew we wanted her to come here,” Erica says. “The facilities, the toys, the activities are amazing. And a pediatric physical therapist is really going to have the best grasp of how to work with a young child.”
When there was an opening for Harper, the family committed to an intense regimen of physical and occupational therapy several times a week.
It was difficult at first. Harper wore her heart on her sleeve, and she was out of her comfort zone.
What is remarkable is how hard this little girl worked even through her discomfort. Family videos of Harper’s therapy over the last year reveal how she pushed through, doing everything that was asked of her—almost as if she had an intrinsic understanding of what was at stake.
First, she learned how to sit dynamically, then it was on to working up the confidence to stand on her own and the skills to pick herself up when she fell.
Something happened along the way.
Harper began enjoying herself. She bonded with her therapist, and made friends on the therapy floor. She got stronger.
Schultz faithfully tried to keep the sessions full of fun, even as they were doing intense work.
“We’re not just dealing with the muscle problem, or the bone problem, or the neurological problem. We’re dealing with the whole child,” Schultz says. “That’s our specialty.”
Harper’s dad, Fred, says he has witnessed Harper’s confidence grow more every week.
“Just when we think she might plateau, she pulls a quick one on us and meets yet another milestone,” he says.
One day, Harper took those first amazing steps …
“They were not pretty steps. They were sloppy,” Erica says. “But they were the most beautiful steps I’ve ever seen.”
* * * * *
On a typical afternoon on the therapy floor, you may hear Harper before you see her …
“Baby shark, doo doo doo doo doo doo, baby shark, doo doo doo doo doo doo …”
She is powering through a treadmill workout, her therapist at her side. Together, they are joyfully belting out her favorite song.
Stronger and braver each day.
She’s got this.
The team of skilled pediatric physical therapists at Johns Hopkins All Children's Hospital in St. Petersburg, Florida, evaluates and provides treatment for infants, children and adolescents with problems that affect the musculoskeletal system. Your child may need physical therapy to help with a chronic condition, developmental delay, or recovery from traumatic injury, sports injury or surgery.