Parents with children waiting for non-urgent surgery at SickKids left with few options

Parents of children who've been waiting years to have routine, non-urgent surgery at SickKids to correct a birth defect say they have few options — either they keep waiting or leave the country as the hospital struggles to reduce a growing surgical backlog.

A total of  698 children were on a waiting list for hypospadias surgery at SickKids as of Oct. 31, making up around 10 per cent of the 6,021 patients waiting for all kinds of surgeries.

CBC Toronto heard from some of those families after publishing a story earlier this week about a three-year-old boy who received a January 2023 date for his hypospadias surgery on Monday — three years after the diagnosis.

Some parents whose children don't yet have a hypospadias surgery date say they've reached out to other Ontario hospitals to see if they could get the procedure done there, only to be turned down, while another is considering travelling to the U.S. and paying out-of-pocket.

Their stories come as children's hospitals across the province are facing a surge in patients with respiratory illness. They highlight how increasing pressure on Ontario's health-care system is straining resources and pushing up wait times for non-urgent, non-emergency procedures.

That's forcing many children to wait beyond the recommended clinical window for treatment. 

'I have no idea when he will ever get this surgery'

Hypospadias is a birth defect in which the urethra is not located at the tip of the penis, but instead on the shaft or near the point where the penis and scrotum meet.

While not life-threatening, medical experts say it should ideally be operated on within six to 18 months. If not treated, patients can develop urinary blockage, reproductive issues or psychological problems as they grow older.

 Rebecca Ring, who lives in Port Perry, Ont., 83 kilometres northeast of Toronto, has a three-year-old son, Owen, who is waiting for a hypospadias operation.

"I have no idea when he will ever get this surgery," Ring told CBC Toronto.

She said she was told by a doctor at the urology department at SickKids in January 2020 that her son will likely require two procedures. Three years after diagnosis, the family doesn't have a date for the first.

"It's really frustrating and it's a bit heartbreaking not to know anything," said Ring. "I feel like we've been ignored."

Ring said her son got a referral to McMaster Children's Hospital in Hamilton, where they also perform hypospadias surgery, but the family was told they couldn't be served there because they live outside the hospital's catchment area.

In a statement, a spokesperson for Hamilton Health Sciences, which operates McMaster Children's Hospital, said it's facing its own pediatric surgical backlog. 

"The current surge in viral illnesses and demand for care is further straining our system and making it even more challenging to address a backlog of approximately 1,400 (all) surgeries," communications advisor Wendy Stewart said.

As her son approaches school age and becomes more aware of his body, Ring said she worries he could develop mental health issues.

"I don't want him to have any type of those issues. I want him to have a normal life," she said.

The American option

Marc Paterson, a Toronto father of two whose 13-month-old son also has hypospadias, said SickKids has told his family they could be waiting between two and four years for surgery.

Paterson said he and his wife also reached out to other Ontario hospitals but were told they can only provide the procedure to patients within a certain geographical area.

Now, they're considering travelling to Cleveland, Ohio and paying $11,000 to a private hospital, plus travel and accommodation expenses, to get the procedure done. 

The cost would be a big one for Paterson and his wife — OHIP won't cover it — but it could mean their son gets the surgery he needs by January.

"He'll have everything fixed. It'll be something that's off our mind and we'll know that, as he grows up, he's not going to have any memory of this ... he's just going to feel like he was a normal, healthy kid," Paterson said.

In an interview earlier this week, Dr. Simon Kelley, associate chief of preoperative services at SickKids, told CBC more than 62 per cent of children waiting for surgery are outside of the recommended clinical window, which can increase the risk of developing complications.

Kelley said the hospital has three pediatric urology surgeons capable of performing hypospadias surgery, but only one regularly performs it.

In an interview on CBC News Network Thursday, SickKids president and CEO Dr. Ronald Cohn said the hospital is doing "everything humanly possible" to reduce the surgical backlog.

"The problem is that we currently don't have enough capacity because of our intensive care unit [and our general ward] being very occupied  ...  to really significantly put a dent into our surgical cases. It will take us unfortunately a little bit longer," Cohn said.

Children's hospitals are becoming so overwhelmed in Ontario that hospitals that treat adults were directed this week to also accept children 14 and older in need of intensive care.

In a statement, a spokesperson for Ontario Health Minister Sylvia Jones said the province is working to free up beds, address staffing shortages and address wait times in emergency rooms and for surgeries.

"We are not okay with the status quo," Hannah Jensen wrote. 

"Our government is in constant contact with our pediatric hospitals, Ontario Health, and other health system partners to alleviate critical care pressures and ensure all patients receive the care they need."