Scoliosis patient will be walking taller after surgery

By Maureen Gilmer, Riley Children’s Health senior writer, mgilmer1@iuhealth.org

It was a week and a half before she would undergo spinal fusion surgery, and Shae AnaBella Scott – Bella to her friends – was fidgeting with a stress ball and showing off her impressive blue press-on nails.

She’s talking about her life with two diagnoses that have meant spending a lot of time at Riley Hospital for Children, but she smiles shyly from the wheelchair she’s sitting in – back straight and head secured by a halo traction device.

Thirteen-year-old Bella has been a Riley patient since about the age of 3. That’s when her mom, Aimee Scott, noticed strange spots on her daughter’s skin and took her to the pediatrician.

Bella was subsequently diagnosed with NF1 (neurofibromatosis type 1), a genetic disorder that causes the growth of noncancerous tumors on nerves throughout the body. On top of that diagnosis came another: scoliosis – an abnormal curve of the spine.

Over the past 10 years, Bella has been fitted with body casts, metal rods, a brace and now halo traction – all designed to slow or correct the 90-degree curve in her spine.

The traction device looks uncomfortable, but Bella says it’s really not. She even sleeps in it.

“It’s actually really comfy,” she said.

Keeping her company on 8 East during the three weeks she must be inpatient and wearing the device before surgery has been a rotating cast of loved ones, including her mom, dad (Shamus Scott), stepmom (Cassidy Scott), grandmother and a family friend.

Riley orthopedic surgeon Dr. Tyler Christman has been her doctor for several years, putting in her first set of growing rods when she was 6, after a series of body casts that were designed to keep her spine aligned.

“Bella has been managing her scoliosis here at Riley Hospital since she was 3 years old, and she has done remarkably well,” he said, describing her as “strong and brave.”

Fast forward to Thursday, Feb. 6, and he would be the one performing spinal fusion surgery as hopefully the last step in the treatment of her scoliosis. While a relatively low percentage of kids with scoliosis require spinal fusion surgery, Bella’s condition was aggravated by the NF1.

“It was challenging, but it went very well,” the surgeon said Friday, a day after the surgery.

Challenging due to the NF1, which turned a typical four-hour surgery into an eight-hour trip to the operating room.

“The type of scoliosis Bella has is often challenging to treat surgically because of the neurofibromas (small tumors) that are around the spine and affect the quality of the bone,” Dr. Christman said.

“They are up against the vertebrae, and that changes the shape of the bone itself. They cause aggressive deformity at the apex of the curve with a lot of rotation around the neurofibromas, so the trajectory of the screws is more challenging and the available safe zone to place the screws is much smaller than normal.”

On top of that, Bella is tiny. The sixth-grader stands about 4 feet, 7 inches, and weighs 65 pounds, so Dr. Christman said he and his team modified some of the instruments for the procedure and used a smaller set of implants for her.

But overall, he is pleased with her progress.

“Our goal was to fuse her spine to prevent any further (curve) progression,” he said. “We were able to do that. We were able to use implants that should give her stability. Her shoulders are nice and level to her hips. She’s not leaning to the side anymore. And we were able to de-rotate some of the scoliosis deformity to give her a more contoured profile.”

Now free from the halo traction device, which didn’t slow her down around the halls of the hospital, Bella is recovering from surgery at Riley for a few days but should be headed home soon.

“We’re excited to get this done and be good for the start of junior high,” Cassidy Scott said.

Bella, meanwhile, is excited to get back on the volleyball court and back in the swimming pool as she shakes off the memory of the body casts, lengthening rods and braces that got in her way before surgery.

To pass the time at Riley as she waited for surgery, Bella began keeping a journal – with different pens signaling different moods – and she watched a lot of “Gilmore Girls.”

“Things haven’t always gone the way we think they’re going to go, but she’s always positive,” Scott said. “She takes everything in stride. She’s tough.”

Dr. Christman agreed.

“That positive attitude has certainly helped her through the challenges of casting and bracing and multiple surgeries for her spine,” he said. “She’s definitely a very strong young girl."

There’s one thing Dr. Christman can’t help her with, however: French braids.

He tried fixing her hair in the operating room before he put the halo traction device on her head a few weeks ago, but she came out with three wild pony tails.

“My daughter just turned 10, and I’ve been trying my best to learn how to French braid her hair for a long time,” the surgeon said. “For whatever reason, I struggle with that. I’m still learning,” he chuckled.

For now, he will stick to surgery and leave hairstyling to someone else.

“We fused (her spine) with the maximum amount of correction that I think was safe and that the bone quality and the curve rigidity would allow for,” he said. “With it fused in place now, she ideally will have no more surgeries for her spine, assuming everything continues to go well.”

Bella also sees neurology and ophthalmology at Riley, so she won’t be a stranger, but she and her family are relieved to have this latest procedure in the rearview mirror.

“Riley has been wonderful, and Dr. Christman has been great,” her stepmom said. “I think we’re seeing the light at the end of the tunnel with the fusion. She’s ready for it to be done.”

Photos submitted and by Mike Dickbernd, IU Health visual journalist, mdickbernd@iuhealth.org