Just nine years old, Lilly Collingbourne has already endured more than people three times her age.
The Barrie youth was diagnosed with severe scoliosis when she was three years old and has spent the better part of the last five years in a brace or a cast to help correct the severe curve in her spine.
Now, thanks to an innovative treatment called Vertebral Body Tethering (VBT), a non-fusion spinal device intended to treat idiopathic scoliosis Lilly can look forward to life without a brace.
Her mother, Samantha Woyce, who herself was diagnosed with scoliosis when she was 18, told BarrieToday she first noticed Lilly may have inherited the disease when she was about 18 months old.
“She would bend over in the bath (and) I could tell her one rib kind of humped out and her back didn’t look quite straight,” she said, adding an x-ray when Lilly was three confirmed the diagnosis.
“Her curves were quite severe and she started the bracing program at Sick Kids Hospital in Toronto when she was four.”
Since then, Lilly has been in a series of casts, which would go from her hips to over her shoulders.
“It was tough. It was a constant battle for us as parents to get her to put her brace back on. She would make up any excuse to take it off, and to see her struggle was really hard," said Woyce.
In January of 2021, Woyce took her daughter back to Sick Kids. Based on the x-rays taken at the time, doctors felt she would need to be in cast for the next 18 months and then have surgery to put rods in her back.
“Her curves were so bad they were thinking she would be looking at permanent nerve damage,” Woyce said. “I really didn’t like those options. Casting is horrible … it’s like a cast on your leg but on your whole torso.
"You can’t swim, you can’t ride a bike and you can’t do anything that would jolt you too hard because your back can’t take the compressions,” she said, adding she spent quite a bit of time researching their options and was ultimately connected with another parent whose child had travelled to Germany to receive the ground breaking tethering surgery.
While the surgery is relatively common in the U.S. and other countries around the world, in Canada, it's still considered a research-based study.
“If you know about it, and you know to ask … then you can get the surgeons in Canada that can do it,” she said, adding she reached out to Dr. Kevin Smit, a pediatric orthopedic surgeon at Children's Hospital of Eastern Ontario (CHEO) to inquire about getting the surgery for Lilly.
Smitt took a variety of x-rays of Lilly’s growth plates and back, and tested her flexibility to determine if she would be a good candidate.
“They only take certain kids … there are a lot of kids who are too bad ... and no longer qualified for this surgery, leaving them requiring rods or having to go to another country with less restrictions," explained Woyce.
"Here if you’re 60 degrees or worse, or don’t have good flexibility in your spine, they won’t take you, or if you don’t have enough growing left,” she explained. “Thank goodness I did reach out because Lilly was at 55 per cent. They (also) don’t typically conduct the surgery on children under 10, but thankfully she was tall enough (because) it has to fit from the height you are now until you’re fully grown, and most 10 year olds are not that tall.
"They did all the measurements and it just fit her… and they said they wanted to do it on her right away," said Woyce.
Lillly, she said, was scared, even promising to wear her brace every day. While Woyce admits she and Lilly’s dad were frightened too, ultimately after doing their research, they agreed it would be the best option for their daughter’s future.
“Even though bracing and casting is horrible for her, she still couldn’t see past how scary the surgery sounded,” Woyce said.
Lilly underwent the surgery in Ottawa on May 10, and has been recovering extremely well, said Woyce, who admits her daughter does feel a little bit lost.
“Now, she kind of had this fixed and feels a little lost. She says 'I’ve been known as the girl with scoliosis so what am I now?' She still has it, but it was visible before because you could see her brace - so she’s struggling a little bit with not being the girl with the brace," Woyce explained.
That said, both mother and daughter are excited about the future.
“The brace and cast she had to wear 23 hours a day. So the freedom of just being able to be a kid and not having to plan her day around the one hour she can take her brace off is great," said Woyce.
"It’s one less thing to think of and she can just concentrate on being a kid,” she said. “It just makes me so happy she can have that freedom … and go wherever life takes her. It’s not going to hold her back anymore.”
Lilly will head back to CHEO at the end of June for a follow up, but is looking forward to getting back home and enjoying the rest of what summer brings.
“The biggest thing is she wants to swim and ride her bike by the end of the summer.”