Carter has spina bifida, but it doesn’t let it slow him down. He’s a happy, energetic 8-year-old boy who loves school, competitive cooking, playing adaptive sports and best of all—being a big brother to little brother Cohen.
Spina bifida is a neutral tube defect. It ocurs when the bones of the spine don't form properly around part of the spinal cord. Spina bifida can be mild or severe and can affect the ability to walk as well as bladder and bowel control.
Carter was diagnosed while in utero. Carter’s mom, Courtney and dad, Webb—both medical professionals—were prepared. Educating themselves with all the research material they could find on spina bifida, they also had the good fortune of having world-renown neurosurgeon, Fredrick Boop, MD, and his team at Le Bonheur Children’s Hospital.
“For us, one of the most important pieces of Carter’s care is maintaining relationships with Carter’s doctors and caregivers,” says mom, Courtney. “Their support is paramount. They have been with us through the entire journey.” And the road hasn’t always been easy. Carter has undergone 26 surgeries in his young life.
“With my knowledge as a pediatric nurse and Webb’s training in kinesiology and exercise science, we were lucky. We had the advantage of advanced medical knowledge and an understanding of how the system works. We were able to coordinate 10 complex care specialists and spent countless hours going to appointments. Having a child with special needs demands resolve. We are grateful for our insurance, but know that many families are not so fortunate and sadly recent threats to children’s healthcare and Medicaid puts many families even further behind.
Today Carter is thriving because of the medical advances and amazing family-centered care at Le Bonheur Children’s Hospital. “There are great things happening here,” says dad, Webb a clinical exercise physiologist at Le Bonheur. “I am happy to help families that might be struggling with health-related obesity complications, the same way Le Bonheur continues to support our family with Carter’s spina bifida.”
- Story credit Courtney Smith, mother
This story was inspired by the Children’s Hospitals Photo Exhibit. For more pictures, visit https://www.childrenshospitals.org/Newsroom/Photo-Exhibit.