To say Scott de la Bastide is an active 15-year-old would be an understatement.
“I do a lot of sports like martial arts and stuff that requires a lot of flexibility, as well as snowboarding and riding motorcycles,” Bastide said.
When he was diagnosed last June with severe scoliosis, it came as a massive surprise. The disease deforms the spine, and it meant an invasive surgery was in his future.
“I was quite shocked actually, I was speechless. I didn’t know what to say,” Bastide said.
Bastide’s scoliosis is considered to be severe because the s-curves on his spine are greater than 50 degrees and the traditional treatment would be spinal fusion surgery.
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The surgery can prevent serious health issues down the road, such as crushed lungs, heart problems and breathing problems. But as Scott’s father, André de la Bastide understands it, the procedure is life altering.
“Spinal fusion is the process of putting basically two parallel rods on top of the spines with many screws in there,” André de la Bastide said. “Off course you lose rotation and you lose flexibility.”
However according to Scott de la Bastide, what was even more shocking than the diagnosis, was the doctor’s bedside manner.
“For him, the only thing that was relayed and put onto to the table was, ‘You’re gonna need fusion,'” Bastide said. “And I didn’t even know what it was I had to go and research everything myself.”
Scott’s mother, Sarah Clayton, was with her son when he received the diagnosis and did not accept the doctor’s conclusion that fusion surgery was the only option.
After Clayton and her father researched and contacted friends who went through similar medical problems, they found out about anterior scoliosis correction, a newer alternative to fusion surgery.
The family decided it was a better alternative because they feel it would be less invasive and would allow Scott to return to his athletic activities in a few months after surgery.
The Bastides visited the Institute for Spine and Scoliosis in New Jersey and found out Scott was a candidate.
There was only one problem.
“Although the surgery might be available in Quebec, it’s on a very limited basis with strict guidelines to younger patients only,” André de la Bastide said.
Scott did not qualify for the surgery in Quebec and therefore needed to head to the United States, where it would cost $75,000 U.S. up front and $85,000 U.S. in hospital fees.
They would like Quebec’s medical insurance to cover the cost, but need two scoliosis experts to sign off on waivers, which has proven to be difficult.
In an email sent to the family, it appears that one scoliosis expert who was consulted is refusing to sign the waiver.
“Please note that the treatment you are requesting reimbursement for is available in Quebec,” the email reads. “The issue I have is that it is not the standard of care for the type of deformity your son has, hence it falls outside the scope of what I would consider reasonable for your son. Therefore, I can not sign the attached document.”
Clayton was frustrated and angered by the rejection. She also recalled how the doctor reacted when they asked about the anterior scoliosis correction in their follow up appointment in October.
“When we were discussing this new type of surgery with the doctor he didn’t really want to give us the time of day to discuss that option for Scott,” Clayton said. “He was like, ‘No. he has to have fusion and that’s the only option that we have here for him.'”
According to the Bastide family, the New Jersey clinic said anterior scoliosis correction is possible for maturing teenagers such as Scott, but since he has nearly completed his growth spurt, the window of opportunity is closing.
The situation has left the family disenchanted with Quebec’s medical system.
“It’s frustrating for me to pay my whole life… in this system of the assurance maladie and not being able to have anything back,” Scott de la Bastide said. “It’s useless.”
The Bastide’s have started a Go Fund Me campaign, and if that fails they are ready to sell their house.
The hospital network where Bastide was diagnosed did not return Global News’ request for comment.
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