Parents ask why it's so tough to get OHIP coverage for life-changing surgery

It's not a matter of 'if' for families wanting to fly south for what's called SDR surgery it's 'how.'

Selective Dorsal Rhizotomy (SDR) is not offered in Toronto. Instead, it's performed by pediatric neurosurgeron Dr. T.S. Park at the St. Louis Childrens' Hospital in Missouri.

It gives kids living with Cerebral Palsy — who are often confined to wheelchairs — something so many of us take for granted.

A chance to walk.

But getting to St. Louis costs money. A lot of it.

The surgery costs $46,245 US. Kids and their families must stay in St. Louis for days or even weeks afterwards. Once home, there is a long list of expensive post-surgery costs: specialized equipment and a full-year of intense rehab.

There is help available from OHIP. But several families tell CBC Toronto the struggle to get funding is a nightmare and often impossible.

"They get to pick who goes and who doesn't go," says Fiona Santos, who's fundraising to send her nine-year-old daughter, Athena , to St. Louis.

"It's not right. It's not right at all."

To qualify for OHIP coverage for the procedure, one of two neurosurgeons must sign off on the paperwork. One works at McMaster University Medical Centre, the other at Holland-Bloorview Kids Rehabilitation Hospital.

Santos says McMaster refused to see Athena because she lives in Richmond Hill, which is outside of its catchment area.

She then tried Holland-Bloorview, but says she was told the same thing.

"I have no idea where to go now. No one can give me a straight answer," says Santos.

"It's like these surgeons here are playing God."

'A fighting chance'

Santos considered re-mortgaging her home to pay for the surgery or extending her credit line. But she says she's maxed out.

Instead, like many others CBC Toronto has talked to, she is now turning to friends, family and the community to help by creating a gofundme page..

"Here, the prognosis is that she would continue to use her walker and wheelchair, that would be the best outcome for her," said Santos, her voice breaking.

"I'm sorry. As a parent, I'm willing to bet with a guy that says, 'We can do better than that.' And Dr. Park offered that to me," she told CBC Toronto.

"She would actually have a fighting chance."

'Miracle' surgery

As soon as a CBC camera came through the door, Aidan Visentin wanted to show off his blue suede shoes.

The 10-year-old Brampton boy with an obsession with Elvis and an impossibly cute smile, admits he's bored halfway through our interview.

Sitting on the couch in his living room, he wants to know when he can demonstrate how he walks.

"I feel like I can walk everywhere," said Aidan.

And then he does, one foot in front of the other through the front hallway and kitchen as the camera is rolling.

His mom, Stephanie Visentin, calls it a miracle.

"He hasn't used a wheelchair in two and half years," she says, smiling as she watches her youngest son.

Aidan now uses crutch canes to get around and can take the stairs on his own.

He was the first Ontario child to have SDR surgery in St. Louis, back in 2014.

After Aidan's surgery, Stephanie realized many other parents were in the same situation — fighting to get their kids surgery and struggling to get OHIP funding.

She started a Facebook group and was quickly overwhelmed by the response. 

"I tell everyone just to apply," says Stephanie.

"It's a crap shoot at this point. Maybe you'll get lucky. It's like flipping a coin."

But she adds, "I really think it's easier to fund-raise than it is to fight our system. It should not be that hard."

SDR surgery coming to Toronto?

Ontario's Ministry of Health and Long-Term Care has long said it's reviewing a proposal to bring the surgery to the province.

In an e-mail to CBC Toronto, a spokesperson for the ministry said a committee is expected to release its recommendations this coming spring.

It was once offered by the Hospital for Sick Children, but the procedure was discontinued.

"There are select cases in which patients have been helped by SDR surgery, SickKids spokesperson Caitlin Johannesson wrote in an email to CBC Toronto.

"As a result SickKids and Holland Bloorview Kids Rehabilitation Hospital are in discussions with the Ministry of Health and Long-Term Care regarding the development of a clinical program that would allow us to perform the procedure and provide follow-up care for children that meet the clinical criteria for this surgery."

While families say that is encouraging news, they can't wait any longer. As kids with cerebral palsy grow, pain can worsen. And in Madison Ambos's case, her feet are starting to roll inwards, which could make walking on her own difficult.

"We've decided not to wait," said her mom, Katherine Ambos. "We want to give her what she needs as soon as possible."