Finding the Freedom to Be Avery With an Alternative Scoliosis Surgery
As Adrienne Kvello watched her 7-year-old daughter Avery turn a cardboard box into a rocket ship, she wasn't surprised in the slightest. Avery always had a way of bringing her creativity to life. But when Avery bent over to grab a marker, Kvello's motherly admiration quickly turned into concern. A feel down Avery's back and Kvello knew: Her daughter had scoliosis.
"My sister had scoliosis, so when I saw the curve, I knew right away," explained Kvello.
Kvello, a resident of Fayetteville, Arkansas, took Avery to their local pediatrician where X-rays confirmed she had a 53-degree curve in her spine, putting her in the most severe category of scoliosis curves.
"They sent us to the children's hospital in Little Rock because they knew right away with the severity, it wasn't going to be something they could deal with," Kvello said.
While in Little Rock, an MRI discovered the cause of Avery's scoliosis. A Chiari malformation — a condition in which part of the brain bulges through the opening at the base of the skull — had allowed a large pocket of fluid to form on her spinal cord, causing her vertebrae to curve around it.
"Before we could do anything about the scoliosis, we had to deal with that first. It ended up being a major surgery," said Kvello.
Doctors performed a decompression surgery, a procedure in which bone is removed from the back of the skull to relieve pressure. After weeks of recovery, Avery and Kvello were back at the hospital discussing Avery's next potential major surgery.
Saying No to Limitations
The orthopaedic team recommended the Shilla surgery, which uses partially fixed rods and screws to help straighten the spine. To cover the long length of her curve, Avery was looking at a minimum of three surgeries and a lengthy set of limitations. Kvello wasn't happy.
"They had a long list of things she wouldn't be able to do anymore — soccer, gymnastics, wakeboarding, even jumping off of the swing. She was a 7-year-old super energetic kid. There was no way I could wrap her in bubble wrap."
Kvello started looking for alternatives.
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During her research, she found that scoliosis caused by a Chiari malformation can sometimes improve on its own after decompression surgery. To give it a chance, Kvello decided to postpone any procedures and try back bracing instead.
"The bracing years weren't fun or easy. Avery was only allowed to take it off for gymnastics and soccer. … She couldn't do a lot of things in P.E., couldn't wear the clothes she wanted, had to sleep in it — I'm not sure how she ever slept to be honest. Still, it was better than the alternative," said Kvello.
After two years of holding out hope, Kvello was saddened when X-rays revealed there was no improvement in Avery's curve. Surgery was unavoidable, only this time, Kvello had a new option to consider.
A New Surgical Solution
Through a scoliosis Facebook group for parents, Kvello learned about an advanced procedure called vertebral body tethering (VBT). Instead of using rods or fusing bones to fix the spine in place, a surgeon creates a tether system to correct the curve in a way that maintains a child's flexibility and naturally adjusts as they grow.
On paper, it checked all of Kvello's boxes. The only problem was there were only a few doctors throughout the United State who knew how to perform the procedure, and none of them were in Arkansas.
"Dr. Dan was the closest one to us, and he had so many glowing reviews in all of the Facebook groups," Kvello said. "It was an easy decision to go."
Kvello and Avery made the five-hour drive to Children's Hospital in Columbia, Missouri, to meet with Daniel Hoernschemeyer, MD.
"I see patients from all over the country in the same situation as Avery, looking for that glimmer of hope that will allow them to keep doing the things they know and love without limitation," said Hoernschemeyer. "Avery was an extremely active kid, and our goal with VBT was simple: let her keep being that active kid."
After an evaluation and X-rays, Hoernschemeyer determined Avery was a perfect candidate for VBT surgery, minus one small, but fixable, detail. The bones in her spine were just shy of being the optimal maturity needed for surgery, meaning she would need to brace for six more months. Kvello and Avery were happy to oblige.
"It was pretty much our only shot at having one scoliosis surgery. I knew there was a chance for revisions — just like there was with any of these surgeries — but when we weighed all of our options, this was the one," said Kvello.
At the age of 10, three full years after her initial diagnosis, Avery underwent VBT surgery.
"It was an all-day affair," said Kvello. "We went in super early and didn't get to see her until 5 or 6 p.m. that night. But the team was awesome and kept us informed the entire time. During her recovery, they even had a music therapist and Link, the facility dog, come visit her. For a hard experience, they made it a good one and it was very smooth."
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Back Bends and Freedom
After a five-day stay in the hospital, Avery was sent home. To no one's surprise, it didn't take Avery long to start getting back into the swing of things.
"She had to do a few weeks of physical therapy, but honestly it didn't take long for her to be walking and moving around," said Kvello.
Since the surgery, Avery's had multiple follow-up appointments and X-rays to make sure her spine stays straight as she grows and reaches her full skeletal maturity. And although the roundtrip to Missouri can get long, knowing they have the best team and equipment to care for Avery has made it all worthwhile.
"Dr. Dan and his entire team are fantastic. They're very communicative — I've never found that with other doctors," Kvello explained. "They also have an EOS X-ray machine that has less radiation than traditional X-rays. With her needing so many, it's worth the drive for that extra layer of safety alone."
Now 12 years old, Avery has officially been "released" from the more stringent monitoring phase. Her latest X-ray showed she is close to hitting her full growth maturity, giving her a very slim chance of needing any sort of revisions.
"We are just so, so glad," Kvello said. "I mean, we were looking at options that would only allow her to bend at the waist. But now, if she wants to do a back bend, she can do a back bend."
As for what's next for Avery and her creativity:
"She loves musical theater and dance, loves to write, draws. … I don't know what the future looks like yet, but I know it'll be creative."