A Saskatoon family says the province could be and should be doing better for children and teens requiring a certain type of back brace.
The problem, said Lauren Perryman, is the braces currently being offered to patients are archaic so her family opted to fly halfway around the world to explore another option. The family said they have no regrets.
The trip came after Lauren’s 13-year-old son, Jackson, grew four to five inches this spring. The more he grew, the more concerned his parents became with a curve in his spine that they had already seen an orthopedic surgeon about the year before.
“Jackson was diagnosed just this past August with Scheuermann’s Kyphosis, it’s very rare. They say about one per cent of the population has it, it does happen more often in boys than girls and this is about the stage that it’s diagnosed, between the ages of 11 and 15 typically,” Lauren said.
Jackson would need a back brace, a conservative treatment for both Scoliosis and Kyphosis.
“I panicked, they look like a body cast,” Lauren said after she began to Google the type of back braces offered in Saskatchewan. “It’s not easy on these kids, the biggest issue is non-compliance – kids will not wear these braces.”
During follow-up appointments, she asked health care providers why it appeared as though the braces hadn’t evolved.
“I said, ‘Why are these braces like this? Why have they not changed in 50-60 years?’ He said, ‘well the human body hasn’t changed.’ I just picked my jaw up from the floor but said, ‘technology has changed.‘”
“Jackson would not be able to take it off and on on his own because the straps are in the back so he would have to have help, let’s say, when he takes it off for gym class to put the brace back on,” Lauren said.
“No 13-year-old in front of his peers and teachers wants to ask for assistance.”
In order to get the brace they wanted, the family travelled to Germany to get one in September.
After a full body X-ray, Jackson received his back brace one day later as opposed to the four- to six-week wait the family was told they’d have to wait in Saskatchewan.
Jackson, who is required to wear it 20 hours a day including when he sleeps, says he only takes it off to shower, play ball hockey and during gym class.
“I don’t really notice it that much any more, I’m kinda used to it but it feels tight.”
Jackson is also required to do some specialized exercises so by the time he stops growing he can take the brace off and his posture will be naturally corrected.
If he’s more likely to wear a brace that’s less bulky, the family said there is less of a chance he’ll need major spinal surgery – making the $12,000 trip including the $4,300 brace worth every penny.
“We’re thinking about Jackson’s long-term health here,” Aaron White, Jackson’s father, said.
“We want him to be 40-50 years old and not have chronic back pain and spinal fusion surgery but still to be able to have an active and healthy lifestyle.”
The family is also looking at having to spend thousands more to return to Germany every three months for follow-up appointments until Jackson reaches skeletal maturity or until he stops growing, according to his mom.
“We’re fortunate that we have the resources to be able to do this for Jackson. It hasn’t been easy but we’re able to,” Lauren said.
“A lot of families do not have these resources, they’re stuck putting their children in these archaic braces that they’re making here.”
Dave Morhart, executive director for Client Services, Extended Benefits and Policy for the Ministry of Health, said the province relies on specialists to recommend what is most appropriate for a patient’s medical needs and that the average cost of a brace in Saskatchewan is $800.
“We do need to ensure that our programs do remain sustainable so that we can provide that maximum amount of benefit to the maximum number of patients.”
Morhart went on to say that if a family finds a product isn’t meeting their medical needs, the province says it will work with a specialist and supplier to find something that does.