When he was 9 months old, Carter’s parents began to notice something unusual about their son’s posture. His torso seemed to be veering in a different direction while standing upright. Concerned, they sought answers from Carter’s pediatrician, who referred them to pediatric orthopedic surgeon Dr. Suken Shah, Division Chief of the Nemours Spine and Scoliosis Center, and the Shands/MacEwen Endowed Chair of Orthopaedic Surgery at Nemours Children’s Hospital, Delaware. Here, Carter received a diagnosis of Early Onset Scoliosis and Chiari malformation.
Scoliosis is a condition where the vertebrae in the spine form a curved line instead of being straight. Larger curves can lead to joint damage, arthritis, and pain, often requiring treatment such as back braces or surgery. Chiari malformation occurs when the cerebellum pushes downward through the foramen magnum, the opening at the base of the skull. It can cause symptoms such as headaches, balance issues, and numbness. Sometimes, children with Chiari malformation can also have scoliosis. Treatment varies from regular monitoring with follow-up MRIs to posterior fossa decompression surgery for severe cases, aimed at relieving pressure on the spinal cord.
Upon arriving at Nemours, Kathleen and Carter experienced a level of care that exceeded their expectations. From doctors and nurses to occupational therapists and physical therapists, everyone at Nemours displayed genuine concern for Carter’s well-being. Dr. Shah and his team developed a plan that included an innovative surgical plan and growth-friendly treatments customized specifically for Carter.
“I can’t tell you how thankful we are for the care Carter has received,” says Kathleen. “The staff here really care about your child’s needs and actually listen to you. They work so hard and help your child in any way they can. I can’t say enough great things about them all! I’m beyond thankful for everyone who has helped Carter along his journey!”
After undergoing three planned, staged surgeries in three years and subsequent doctor visits, Carter has entered his recovery phase. “I’m relieved that it’s recovery now,” says Kathleen. “Carter has been through SO much in the 6 years of his life! It’s been an emotional roller coaster for sure.”
Looking ahead, Kathleen and her family plan to take things one day at a time, cherishing each milestone achieved by Carter. Their journey has taught them the importance of resilience, advocacy, and patience. “We will definitely be continuing our care here at Nemours with Dr. Shah and his team,” says Kathleen. “We couldn’t be happier with Carter’s care!”
To other families facing similar challenges, Kathleen offers these words of wisdom, “My advice to anyone going through this would be don’t ever give up. Always push through each day and it will get better and easier. You are the only one who knows your child so be their advocate at all times! Stay patient and trust your journey!”
