Samantha Woyce says scoliosis is not something that is talked about enough in the Canadian health care system. She would know – not only has the Barrie native lived with Scoliosis since she was young, but it’s also affected her oldest daughter Lilly.
When Samantha was 12, she started experiencing pain in her back. “I complained to my family doctor of back pain,” Woyce says, ” and he prescribed me muscle relaxants – at 12 years old! He didn’t check my back at all.” When Woyce was 18, her back locked up so severely that she couldn’t move. A visit to a chiropractor resulted in an x-ray being taken, which revealed a severe spinal curve.
“When he put the X-ray up on the screen I almost threw up. To think my back was that bad and no doctor noticed, it makes me think of all the backs that are being missed. “
Scoliosis can be hereditary, so when Samantha’s daughters were born she was sure to check their spines regularly. She knew in her gut from the time her daughter Lilly was a baby that she also had scoliosis. Samantha says when Lilly would bend over in the bathtub her ribs would push out on one side. The diagnosis was confirmed when Lilly was 3, once she was old enough to sit still for an x-ray.
Since her diagnosis, Lilly has been in body casts and braces through the spinal program at Sick Kids hospital. “It’s pretty hard to do everyday stuff,” says Lilly of wearing her brace. “When I bend over, it feels like I can’t breathe because it’s so tight. Sometimes it pinches my skin and it hurts. At the end of the day at school, there is always pencils and stuff under my desk because I can’t always bend down to pick them up…but my friends help me.”
Lilly is now 9. Doctors recently told her that the curves in her spine had progressed to the point that she’d need to be in a body cast for the next year-and-a-half, and then her back would have to be fused with rods after that. Her mom refused to believe that there wasn’t a better option out there.
Samantha researched and reached out to other scoliosis parents, which is how she learned about Vertebral Body Tethering (VBT). The procedure is like braces for your teeth, but on your spine. The patient will still have movement in their back, but the tethers guide the spine straight. The procedure has been done around the world for over a decade, but Canada only started trials three years ago. Samantha found a doctor, at the Children’s Hospital of Eastern Ontario, and received a referral. “It turns out, Lilly’s curves were at the point that if they got any worse, she wouldn’t be a candidate for this surgery,” says Woyce.
Lilly and her family will head to Ottawa on Friday, May 7th to begin her pre-op appointments, and her surgery is scheduled for May 10th. Lilly is no stranger to hospitals, but this procedure is a whole new ball game. “I’m very nervous, but at the same time I am very, very excited,” says Lilly, “because I won’t have to have casts or my brace any more. I can just go in a pool whenever I want, like any other kid!”
Lilly is the youngest candidate to be accepted in to the study so far. Typically, they won’t attach the tether until a patient is 10, but because of Lilly’s height the device will fit. The procedure is still new in Canada, so anyone who receives the tether is part of a study for future use. The fact that her surgery could help other kids is something that helps to calm Lilly’s nerves “I didn’t think I’m that brave, but once I think about it, it is pretty cool that it could help other kids.”
Samantha Woyce hopes her daughter’s story will help spread awareness about Scoliosis. “There are so many parents I have spoken with that caught their kid’s scoliosis too late,” Woyce says, “I just want parents to be aware and check their kids backs. Ask them to bend over and touch their toes then follow their spine with your fingers. If you have any doubts that their back is curved ask your family doctor to check, and request an X-ray. If we could save even one kid from missing out on a life changing surgery like tethering it’s all worth it. “