From local volleyball courts to an FDA hearing in Washington, D.C., this young lady from Longwood is leading a brand-new crusade against the scourge of scoliosis.
Some things just don’t go together. Water and electricity, for instance, peanut butter and ketchup, or volleyball and spinal-fusion surgery. Thirteen-year-old Kaitlyn Boyle of Longwood already knows to steer clear of the first two combos, and thanks to a cutting-edge new treatment for scoliosis, she’s also hoping to avoid the spinal fusion surgery that would all but put an end to her love of playing volleyball.
Kaitlyn’s adventure began when her mother, Tina, noticed something during a family vacation.
“Look, you’re getting a hip,” Tina said of her bikini-clad daughter, who was nine at the time. Tina could see young Kaitlyn’s hipbone starting to protrude. But, oddly, the bone was only visible on one side. “I just thought it was [her] growing,” recalls Tina, but that random hipbone sighting became something much more.
A trip to the doctor confirmed an “S” curvature of Kaitlyn’s spine. It was scoliosis. One of Kaitlyn’s hips and shoulders was growing higher than the other. After meeting with an orthopedic surgeon, the family – which includes Kaitlyn’s father Shawn, the finance and administrative services director for the City of Winter Springs, and older brothers Matthew and Devin – decided to try a back brace for Kaitlyn.
Kaitlyn, now an eighth grader at Greenwood Lakes Middle School, spent time in two braces. She wore one at night for a couple of years, which straightened out the bottom section of her spine, but the top of her backbone began to curve even worse. A 23-hour-a-day brace was then prescribed, but the brace was even more traumatic for Kaitlyn than the condition itself. She couldn’t use the restroom without someone’s help to undo the fasteners in the back of the brace. Only one traditional scoliosis treatment remained, but it was the one best avoided: spinal-fusion surgery, which would severely limit Kaitlyn’s mobility for the rest of her life.
So Tina, an audiologist, relied on her research skills to do some digging on scoliosis and potential alternate treatments.
“From anything I’ve read, bracing has a 65-percent success rate,” explains Tina. “We seemed to be on a path to a spinal fusion, regardless. Anyone with a curve more than 25 degrees before the age of 10 has almost a 100-percent chance of it moving to a surgical level, because it’s before they hit their growth spurt.”
Tina eventually discovered information online about Vertebral Body Tethering (VBT). It involves titanium screws inserted into the outside of a patient’s vertebrae. The screws are tethered to help reverse the curvature of the spine as the bones grow. The treatment could save Kaitlyn from spinal-fusion surgery and allow her to live normally, but there was only one roadblock. The FDA has approved VBT treatment for the lower spine, but upper-spine VBT is still experimental.
Only a few hospitals in the world perform VBT surgeries, including Shriners Hospital for Children in Philadelphia. The local Shriners club in Orlando helped the Boyles pay for the trip to Philadelphia and other expenses not covered by the family’s health insurance. Dr. Patrick Cahill of Shriners Hospital decided Kaitlyn was a good candidate for the experimental use of VBT. He performed Kaitlyn’s surgery a year and a half ago. It was only his third time doing a VBT procedure.
“My back didn’t hurt. Shriners did a really good job,” says Kaitlyn, who has minimal scarring and was cleared to return to the volleyball court just weeks after her operation. She’s grown five inches since surgery, Tina says, and the curve is nearly gone as of Kaitlyn’s last checkup.
While Kaitlyn’s medical journey is hopefully nearing its end, her role as a cutting-edge case study and an advocate for the new treatment is just beginning. Dr. Cahill invited Kaitlyn to come speak at a U.S. Food and Drug Administration (FDA) hearing in July. Tina and Kaitlyn went to Washington, D.C., to offer a patient’s perspective to a gathering of 50-60 people including surgeons, the FDA director and deputy director, biomedical engineers, and the FDA’s spinal device review team. Back in Longwood, Shawn listened to his daughter’s testimony via conference call. Kaitlyn told the panel about her personal experiences now that the procedure is complete.
Kaitlyn is also proving to be an invaluable resource for other kids and their parents who are experiencing scoliosis and considering treatment options and those who have had VBT. Kaitlyn is a regular contributor in a number of online forums and has become a source of inspiration and ongoing education.
Tina is quick to point out that every scoliosis case is unique, and the treatment that was so effective for her daughter is still very much in its infancy.
“I am walking a fine line,” Tina says. “We don’t want to market something that still has not been approved by the FDA. I’m just trying to share our experience. We hate for other people to miss any option.”
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