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Spina Bifida: Carter's Story

About 120,000 babies are affected by birth defects each year in the United States. Not only can birth defects lead to lifelong challenges and disabilities, they are also the most common cause of death in infants and the second most common cause of death in children aged 1 to 4 years.

For National Birth Defects Prevention Month, Speak Now for Kids spoke with Carter’s parents, Webb and Courtney, to learn what it’s like to parent a child with a birth defect and how the condition affects her family’s life.

Carter was born with spina bifida. Although spina bifida impacts his life every day, Carter does not let it define who he is. This happy and energetic boy loves school, competitive cooking, playing adaptive sports and, best of all, being a big brother to little brother, Cohen.

Spina bifida is a neural tube defect that often results in damage to the spinal cord and nerves. Spina bifida might cause physical and intellectual disabilities that range from mild to severe. In mild cases, permanent loss of some sensation or movement occurs. Severe cases include paralysis and loss of bowel and bladder control.

Carter has undergone 26 different surgeries and requires 10 different specialists for his condition. As medical professionals, Carter’s parents were prepared when Carter was diagnosed in utero. They educated themselves with all the research material they could find on spina bifida so Carter could reach his full potential.

“With my knowledge as a pediatric nurse and my husband’s training in kinesiology and exercise science, we were lucky. We had the medical knowledge and an understanding of how the system works,” says mom. “For us, one of the most important pieces of Carter’s care is maintaining relationships with Carter’s doctors and caregivers. Their support is paramount. They have been with us through the entire journey.”

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, 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.”

This story was inspired by the Children’s Hospitals Photo Exhibit. For more pictures, visit https://www.childrenshospitals.org/Newsroom/Photo-Exhibit.

 


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