Community rallies to help St. Lazare family raise $200,000 for son’s spinal surgery
PHOTO COURTESY ANDRÉ DE LA BASTIDE
Last June when St. Lazare resident Scott de la Bastide went for X-rays at Montreal’s Shriner’s Hospital he received some shocking news. An orthopedic specialist diagnosed the 15-year-old with a severe form of adolescent idiopathic scoliosis, a three-dimensional deformity of the spine that has no identifiable cause, but may have a genetic component.
Because Scott had a double curve of 56 degrees in his thoracic spine and 53 degrees in his spine’s lumbar area, the surgeon bluntly told his family he would need spinal fusion from his T5 to L3 vertebrae, pretty much his entire back.
“That’s when the horror started,” said Scott’s father, Andy (André) de la Bastide, whose family has turned to GoFundMe to raise $200,000 so that Scott can go to the United States for a minimally invasive fusionless type of scoliosis surgery not available in Canada
At first neither de la Bastide nor Scott’s mother, Sarah Clayton, knew anything about spinal fusion but they were very familiar with scoliosis, since both Clayton and de la Bastide’s sister have it.
“My wife has scoliosis,” said de la Bastide. “It’s a single curve, it’s a small hump on her back and she’s been living with this all her life and of course some cases are more severe than others. A lot of people can live with the condition of scoliosis and their curves typically progress to one degree a year.”
But in severe cases like Scott’s, doctors call for surgery to stop the curves from rapidly worsening and eventually crushing his heart and lungs.
After researching spinal fusion surgery, which involves putting in screws and titanium rods to hold the spine straight, neither Clayton nor de la Bastide wanted Scott to have that surgery.
“Basically in his case he would have to have his whole back immobilized and locked, which means he won’t be able to twist from side to side,” said de la Bastide. “He wouldn’t be able to practice aikido anymore; he wouldn’t be able to snowboard anymore. After a couple of years the hardware starts to give you problems, rods do break.
“The surgery is so invasive, it’s six months-to-a-year recovery in some cases,” he continued. “During the operation they literally slice open your back, they peel the muscle away and to make your spine straight they use two titanium rods with pedicle screws,” he said. “I went on YouTube and I did the research and I’ve seen some testimonials from people saying they wish they’d never had it done, screws poking through their back, muscle spasms. The muscles are trying to fight to get your back moving but they can’t because they’re locked.”
They approached Dr. Stefan Parent, who’s performed revolutionary surgery for idiopathic scoliosis patients at the CHU Sainte-Justine. “Unfortunately he (Parent) told us that our son is too skeletally mature, according to the X-rays to have this done,” de la Bastide said.
A friend whose daughter underwent a breakthrough surgery for scoliosis told Clayton about the Institute for Spine and Scoliosis, pioneers in Vertebral Body Tethering (VBT).
With VBT, instead of permanently fusing the spine, surgeons go through the side of the rib cage to attach bone screws to the front of the vertebral bones that make up the curve. A flexible cord is attached to each screw and then tightened to straighten up the spine. For adolescents, there’s immediate improvement after surgery and continued improvement as the spine grows.
On November 1, after Scott and his family travelled to Princeton, New Jersey to meet with a team of surgeons at the Institute for Spine and Scoliosis, they learned Scott is a candidate for Anterior Scoliosis Correction (a.k.a.VBT).
“The beauty of this surgery is he can maintain full flexibility and he does have growth left, according to the surgical team.”
Scott’s family can’t book an appointment for the surgery unless they pay $75,000 U.S. Hospital costs are estimated at $85,000 U.S.
Neither de la Bastide nor Clayton has work insurance for surgeries taking place outside Canada and it’s unclear whether the Régie de l'assurance maladie du Québec (RAMQ) will pay even a portion of the surgery, which is not offered in Canada.
Time is of the essence. During an October 11 appointment four-month follow-up at the Shriner’s, X-rays showed Scott’s curves had worsened, progressing from 56 to 66 degrees in his thoracic spine and from 53 to 63 degrees in his lumbar spine.
Because his condition is worsening, de la Bastide said Scott needs to have the operation by January 2017.
“Of course we’re trying to raise funds but the bottom line is he’s going to have this done if I have to sell the house,” de la Bastide said.
To support Scott’s GoFundMe campaign, visit https://www.gofundme.com/scotts-scoliosis-spinal-surgery.