spina bifida patient smiling

John: Thriving with Spina Bifida

One of the first Children’s patients to utilize robotics to improve his mobility, John is walking, playing and progressing.

Muddy pant legs and mulch-filled shoes ... these little nuisances that come with having an active, 10-year-old boy are, for Stephanie and Stuart Harvey, signs of hope that their son, John, will continue surpassing expectations.

The Harveys learned of John’s diagnosis before he was born. “At our ultrasound appointment, we learned that he had myelomeningocele spina bifida,” says Stephanie. “The doctors prepared us for the worst: He could have significant brain damage, as well as no use of his legs or anything below his belly button, where there was an opening on his spine.”

John was transferred to Children’s Healthcare of Atlanta immediately after birth and spent his first day of life in surgery. His spine was closed and, a week later, surgeons inserted a shunt, or tube, into his brain to prevent the buildup of fluid. “We spent two weeks in the NICU. We were so well educated and informed, and came home with a support system around us to help us start this new adventure,” says Stephanie. 

As the years passed, John grew and met key milestones, and his parents’ fears subsided. “We could see from the beginning that many of the things that we were prepared for were not the reality for John,” says Stephanie. “We were seeing ability, movement and things that they did not think he would be able to do.”

Motivated to move
Therapists from our Orthopedics and Sports Medicine Center at Children’s quickly saw John’s motivation and potential as well. “John has this quiet confidence and inner wisdom that has really taught us a lot,” says physical therapist Erin Eggebrecht. “He is now standing up on his own and walking pretty much wherever he wants to, when he wants to.”

John’s parents credit the depth and breadth of the orthotics resources available at Children’s, as well as the 10-year-old’s extracurricular activities—including wheelchair basketball and horseback riding—for his progress and his confidence. “The robotics program motivated him to do more and really enjoy his therapy,” says Stuart.

John was one of the first children to participate in the Children’s Center for Advanced Technology and Robotic Rehabilitation, which uses technology like video games and anti-gravity treadmills to encourage kids to practice and repeat important movements. Also instrumental in John’s mobility are leg braces custom built for his needs. “As patients like John grow taller and heavier, their orthopedic needs definitely change,” says his orthotist, Staci Mackay. “We have to provide more support in order to keep him upright and ambulatory.”

Today, thanks to his determination and support from family, friends and caregivers, John is thriving. “He really doesn’t see himself as being different,” says Stephanie. “It’s really encouraging and inspiring for us as parents just to watch him live his life. Even with as much as he’s endured, there’s a contentedness about him. He thrives where he is.”

A spark of progress
At Children’s, we see kids like John each and every day who are determined to overcome the limitations of chronic illness, and who do extraordinary things to surpass expectations. It’s that spark of stubbornness, their refusal to settle for less, that inspires us in all we do. 

That’s why we won’t stop seeking better answers. We won’t stop trying to uncover cures. We won’t stop growing and expanding until we meet the medical needs of every child who depends on us for care. That spark we see in the eyes of our patients is the spark that drives our progress. 

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