After looking elsewhere for years to access specialized surgery because the Ontario government wouldn’t offer the procedure, some children with Celebral Palsy will soon be able to walk on their own under a new provincially-funded program.
“You are going to go to the moon for your child if you know they are going to walk,” said Brampton mother Stephanie Visentin.
She travelled with her son, Aidan Visentin, who has Cerebal Palsy to St. Louis, Missouri in 2014 for a specialized surgery, a procedure Stephanie credits with helping him to learn to walk.
Selective Dorsal Rhizotomy, or SDR surgery, was offered in Ontario at the Hospital for Sick Children until the early-2000s when it was determined to offer no greater benefit to patients than standard orthopedic surgery.
Families who elected to have SDR surgery were therefore forced to look outside the province, most of them seeking treatment at St. Louis Children’s Hospital by internationally-renowned neurosurgeon Dr. T.S. Park. It cost the Visentin family more than $100,000.
“What was the best thing after surgery?” asked Stephanie of her son Aidan. His answer was simple.
“I could play with all my friends,” said Aidan.
“He’s been able to thrive in a way I know he would not have been able to do otherwise,” said Stephanie.
“Prior to SDR, Aidan was on a slippery slope to being in his wheelchair almost 100 per cent of the time, which is something that upset him.”
But her efforts to bring the surgery back to Ontario for other families have finally led to action by the provincial government.
“We’re always looking at opportunities to repatriate surgeries or procedures that up until now we’ve had to provide through OHIP for families out of province, generally in the United States,” said Ontario Health Minister Dr. Eric Hoskins.
The provincial government is now creating a new SDR program to be offered in province because the evidence base continues to grow for Selective Dorsal Rhizotomy and there are now longer-term studies available showing a good safety record for SDR and evidence for long-term reduction of spasticity.
The program will be run by The Hospital for Sick Children and Holland Bloorview Kids Rehabilitation Hospital and will serve pediatric patients living with Cerebral Palsy by improving their active mobility and reducing spasticity.
“It’s super great being like the other people,” said Aidan, who underwent the surgery nearly four years ago.
Dr. James Drake performed SDR surgeries in Ontario in the 1980s and 1990s. He will be the one to conduct the surgeries once again.
He cautioned not all children with Cerebral Palsy will benefit from SDR.
“We’re looking at a very select group that are quite functional, but struggling with beginning to walk between four and eight years of age.”
Only 10 to 15 children per year will access the surgery in Ontario. But it’s a start, said Stephanie.
“This is what we wanted and we’re very happy, but it’s unfortunate that it’s taken so much fighting and so many families, well over 35 families, have had to fight and go through so many hoops and all over Ontario.”
If there’s any question this surgery is necessary, just ask Aidan.
“It will change your life forever,” he said.