Bronwyn Joanis, 13, was sent letters and stuffed animals from Grade 7 classmates who wanted to celebrate her recovery from life-changing spinal surgery.
But the surgery never happened.
Joanis and her family headed to Vancouver where she underwent the five-hour preoperative process to undergo a specialized operation to fix her scoliosis or spinal curvature on March 19 at B.C. Children’s Hospital.
But then the COVID-19 crisis hit.
On March 17 — just 36 hours before surgery — the procedure was postponed indefinitely and they were sent back to Saskatchewan to wait.
That was two months and more than two weeks ago.
“I hope that my back gets straighter,” said Joanis, in a phone interview from Saskatoon. “It hurts when I walk and I have back pain and was really, really sad that [surgery] got cancelled.”
Marcel Joanis said that his daughter is too upset to talk to friends who were so excited for her, and her time is running out.
Joanis was born with a Chiari malformation, a condition which causes brain tissue to grow into the spinal canal.
She had her first surgery at four years old, another when she was nine, and neural surgery and bone shaving procedures after that, to allow her to grow and develop.
On an MRI scan when she was about 11 or 12, her father said the neurosurgeon in Alberta noticed a scoliosis or curvature of the spine, that can be associated with this disorder.
Joanis, a nurse himself, who has worked in health care for 27 years, began hunting for a solution.
He says the procedure in Vancouver doesn’t involve “rods or screws” and cuts down recovery time by months.
“She has daily pain. She got a brand new bike and she’s ridden it once, because it hurts for her to ride a bike,” he said.
To distract herself, Joanis does crafts and talks to her cousins.
But her father said it’s difficult to watch a vibrant daughter who loves Kesha songs and making TikTok dance videos hide away and shut down.
“She’s depressed. All she is hoping for is to get surgery done in Vancouver. She doesn’t want it done anywhere else.”
Dr. Firoz Miyanji of B.C. Children’s Hospital was preparing to do a procedure called a vertebral body tethering (VBT) to straighten the spine without fusion, metal rods or pins.
Miyanji pioneered the alternative treatment in Canada, in which the surgeon inserts a rope, allowing spinal flexibility and a much faster recovery, than traditional surgeries to treat scoliosis.
Joanis said the family trusted Miyanji, because of his caring manner.
They were in Vancouver at Ronald MacDonald House, ready and prepared, when the pandemic sent them home early, with no surgery.
Since March 17, Bronwyn Joanis has grown, and she is only a candidate for the surgery if her spinal curvature doesn’t increase to a more severe angle, as her bones grow.
There is a specific window of curvature where the procedure is considered effective. Once that’s passed, the young teen is no longer a viable candidate, her father explained.
“It’s hard. It’s really hard. We don’t know even now … is she past the parameters? Could he still do the procedure?”
Joanis said that the surgeon deemed his daughter and one other patient “urgent” cases.
But he said he was told in May that his daughter was not being rebooked, due to ongoing concerns about COVID-19 and because she was from out-of-province,
Joanis is urging B.C.’s health authorities and the minister of health to make an exception and reschedule his child’s postponed procedure, before it’s too late to help her.
At his news conference Tuesday, Health Minister Adrian Dix said the consequences of delayed surgeries have been profound for lots of people but he cannot discuss individual cases.
“We are significantly ramping up the surgical process and if people have concerns, there are ways both through the patient care quality council and directly with health authorities and doctors to address individual issues,” Dix said.
The surgeon did not respond to CBC requests for an interview. A spokesperson for the Provincial Health Services Authority, which oversees B.C. Children’s Hospital in Vancouver, wrote an email to CBC acknowledging the family’s “difficult situation in a difficult time.”
“B.C. Children’s Hospital is aware of this case and is working to find solutions. Right now, we are in the midst of a public health emergency caused by COVID-19.
“One of the most unfortunate impacts of the COVID-19 pandemic is that many surgeries were postponed. B.C. Children’s, along with hospitals across BC, is working to reschedule surgeries based on patient need.”
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