Badge of Honor
Jennie Burke wants other parents to know there is reason for optimism even in advanced cases of scoliosis, a sideways S- or C-shaped curve of the spinal column.
On New Year’s Eve 2020, her daughter Holly had surgery at Johns Hopkins Children’s Center to straighten her spine. In severe cases like Holly’s, scoliosis can cause debilitating pain and deformity, and it can even affect the function of the lungs and other internal organs. Holly’s surgery involved fusing selected vertebrae and stabilizing her spine with metal rods and bone grafts taken from her ribs.
“Holly’s surgeon, Dr. Paul Sponseller, and the entire team at Hopkins were amazing,” Burke says. “The curve in her spine is gone, and Holly is back to functioning completely normally. I can’t imagine better care.”
Sponseller, director of the Johns Hopkins Division of Pediatric Orthopedics, specializes in scoliosis and other conditions that cause skeletal deformities. “Our goal is to avoid surgery,” he says, “and in most cases, we can and do.” In fact, only about 30% of his patients with scoliosis need any treatment at all, he says. And only about 10% need surgery.
The gold standard of nonsurgical treatment is wearing a brace to guide the spine's growth and prevent further curving.
Kristen Venuti, a nurse practitioner and spine care expert who helped care for Holly and who has worked with Sponseller for more than 20 years, is passionate about the importance of early screening for scoliosis, which affects an estimated 2% to 3% of the U.S. population, and can occur at any age. But the most common form, idiopathic scoliosis (meaning no one knows its cause), is most often detected between the ages of 10 and 15. And if the curve is caught early, a custom brace and/or physical therapy regimen can usually keep it from getting worse while the child is still growing.
“All parents should know the word ‘scoliosis,’ know how to look for it,” Venuti says. “Children should be screened annually by their pediatricians during wellness visits, beginning at age 10. Parents can screen their children for scoliosis, too, by having their child bend forward, with knees straight and fingers reaching for toes, while looking for any asymmetry of the ribs, shoulder blades and waist. Catching it early is key.”
For Holly Burke, despite two years of wearing her brace religiously, doing physical therapy and even visiting a chiropractor, her scoliosis kept getting worse and she was in constant pain. “We did everything we could to avoid [surgery],” says Jennie Burke, “but we are so glad we made the decision to finally go ahead.”
Pre-surgery, Burke had been forced to give up her beloved lacrosse and even found it painful to swim. But afterward, she was soon swimming competitively again. She even took a summer job playing a pirate on a ship offering adventure cruises for kids on the Chesapeake Bay.
For her prom, Holly insisted on a backless dress, showing off the thin scar that runs the length of her now very straight spine. “For Holly, it’s a badge of honor,” says Burke. “She is both grateful and proud.”