Paul Sponseller, director of the Division of Pediatric Orthopaedic Surgery at the Johns Hopkins Children’s Center, has been treating children at Johns Hopkins for 30 years. His practice is a prime example of the center’s mission to lead innovative research for the treatment of childhood diseases while providing continuity of care as children grow.

 

“What’s noteworthy about my practice,” says Sponseller, “is that we see many difficult syndromic, genetic, neuromuscular and idiopathic patients with severe deformities.”

 

Many families come to Johns Hopkins because of the specific expertise he offers. Payton Mueller, 15, for example, was diagnosed with spinal muscular atrophy (SMA) after his first birthday. At age 7, he and his mother, Rachele, traveled from their home in North Dakota to a Families of SMA conference. There they connected with Johns Hopkins pediatric neurologist Thomas Crawford, who recommended a thoraco-lumbar-sacral orthosis for Payton’s scoliosis. “Dr. Crawford was the one who told us about success working with kids with SMA.”

 

Two years later, Payton underwent his first growing rod surgery with Sponseller. “Dr. Sponseller has been wonderful at explaining things to Payton over the years,” says Rachele. “During our first visit, he told Payton how he would be with and without the surgery. The outcomes of not having the surgery were not something Payton wanted, so we chose to do the growing rods.”

 

To be sure he’s recommending the best options for each patient and family, says Sponseller, “I participate in nearly every pediatric spine study group, including the Growing Spine Study Group, which deals with very challenging patients who need care for a very long time, such as Payton, and often many operations.”

 

“As a parent of child with SMA,” Rachele says, “you have to make choices that your child may not like but it is for the better. I have the utmost trust in Dr. Sponseller.”

 

Sponseller explains, “We have a lot of research coming out demonstrating the value of care. We have a project that shows improved quality of life using up-to-date methods of outcomes assessment.” The measurement tool, CPCHILD (originally designed by a colleague for children with cerebral palsy) sensitively measures quality of life. It has shown improvements in children treated operatively versus nonoperatively. “Otherwise,” Sponseller says, “it’s sometimes hard to value the surgery because the kids are often so challenged that they don’t do the traditional things like playing sports.”

 

Payton travels annually to see Sponseller and have the growing

rods lengthened. “Payton and Dr. Sponseller have a great relationship,” says Rachele. “The benefits of seeing the same doctor are valuable. We’ve fallen in love with The Johns Hopkins Hospital and staff.”