Thousands of kids waiting months too long for surgeries in Ontario, risking long-term damage

Thousands of children are waiting months too long for surgeries in Ontario - most beyond the safe clinical window - prompting pediatric experts to demand additional funding to help clear the pandemic-fuelled backlog

The growing wait lists, which ballooned due to impacts from COVID-19, mean kids in line for surgery are coping with chronic pain and missing key developmental milestones. Experts say many face long-term health problems from delayed care.

At the Hospital for Sick Children, the number of children waiting for scheduled surgeries, including those for skull, spine and hip correcting procedures, has gone up 50 per cent since the start of the pandemic.

What was a challenge is now a crisis," said Dr. Ronald Cohn, SickKids' president and CEO. Kids are now waiting longer than adults for surgeries in Ontario. To me, that is an incomprehensible problem that has to be addressed."

Earlier this month, the Children's Health Coalition, a provincial group that includes pediatric hospitals and children's health organizations, launched a campaign calling for a concerted, long-term plan to address kids' health with an investment of $1 billion over four years.

The coalition wants the next provincial government to commit to its Make Kids Count Action Plan within its first 100 days. The plan addresses surgical wait times, as well as waits for diagnostic imaging, rehabilitation services and mental health care, Cohn said, noting a system-wide approach is necessary to fix this emergency."

Our operating rooms are running at maximum capacity with the staff and resources that we have," Cohn said. But despite the maximum use of every single minute in the OR, our wait list continues to grow."

Currently, about 5,600 children - the majority under age 10 - are waiting to get into an operating room at SickKids, up from 3,800 patients in March 2020, said Dr. Simon Kelley, an orthopedic surgeon at the hospital and its associate chief of perioperative services.

Only a minority of kids currently waiting are getting their scheduled surgeries within the recommended safe clinical time frame, Kelley said, noting this excludes children who need emergency and urgent procedures, such as those for brain tumours. According to recent data, 61 per cent of scheduled surgeries at SickKids fall outside that recommended clinical window, up from about 35 per cent before the pandemic, he said.

We're in a massive hole. While this was a challenge before the pandemic, the surgical backlog for pediatric surgeries has absolutely been made worse by COVID."

System-wide pandemic disruptions have rocked the health system, most significantly during three provincially mandated surgical slowdowns put in place to free up resources for COVID patients. The recent Omicron waves, which led to critical staff absences, also forced hospitals to postpone some surgeries, procedures and clinics.

Christina Flint-Frazer checks with SickKids nearly every week to see when her two-year-old son, Samuel, will get surgery to repair his fully dislocated left hip.

The toddler, who started walking late and with a limp, was referred to the hospital for an X-ray last September. While those results were available within a day, it took almost four months to have an initial consultation with Kelley, the orthopedic surgeon.

He confirmed a full dislocation. It was described to us as severe,' " Christina said, adding Samuel was born with hip dysplasia, meaning his femur doesn't connect to his hip socket as it should.

We were told at the time that ideally his surgical window would be three months. But then Dr. Kelley said it would likely be six months and that there was already quite a backlog, but they were working on getting it down."

Then Omicron hit. And Christina now wonders if Samuel will need to wait even longer for surgery, something she worries about as she watches her son learn to run and jump with a pronounced limp.

We're concerned with the long-standing damage he'll suffer," she said, noting Samuel has recently grown two inches and his limp seems to have gotten worse, though he doesn't appear to be in pain.

Samuel has also recently been diagnosed with autism, meaning more wait lists to navigate. Christina said on top of those concerns, she and her husband are also waiting to figure out which of them can take time off work to care for Samuel after his surgery. The happy, active toddler will be in a special cast encasing his chest to his thighs while his pelvis heals.

I have no idea at all when his surgery will happen," said Christina. The emotional toll of this wait is pretty intense."

Kelley said SickKids has tried different ways to get its scheduled surgeries back up to pre-pandemic levels, including streamlining referrals and launching a pilot project to run operating rooms on weekends, something the hospital hasn't before done for elective procedures.

Though the hospital did 12,500 scheduled surgeries in 2021 - the same number as completed in 2019 - the wait list still went up by 12 per cent, he said.

Despite us doing that amount of volume, we haven't even touched the wait list; it's really quite worrying," said Kelley, noting children who wait too long for surgeries may require more complicated procedures and are at higher risk for surgical complications and long-term health problems.

Chun Kim, senior physiotherapist on the child development team at Holland Bloorview Kids Rehabilitation Hospital, said he has seen those risks play out for patients.

He described a six-year-old patient with cerebral palsy who developed a dislocated hip that made it painful for her to sit in her wheelchair and who has waited more than year for her surgery with no date in sight.

Another patient, a teenager who needed hip surgery, had to crawl to get around his home while in constant pain. He waited more than a year for his surgery, and now uses a walker. Kim said there is a chance this patient won't be able to again walk on his own.

Because kids are developing and growing, the longer we wait to have these interventions done, it reduces the possibility of a full recovery," he said. All of these waits not only have an impact on their mental health and physical comfort, but it has a negative impact down the road on their quality of life."

Kim said Ontario's pediatric hospitals have the expertise to help kids but require more resources, including specialized staff, to get them their surgeries within a safe window. According to data from Holland Bloorview, in the last year, wait times for orthopedic assessments peaked at 287 days - much higher than the hospital's target of 137 days.

At McMaster Children's Hospital, about 1,400 children and youth are waiting for surgery, said the hospital's president, Bruce Squires. Some of the delayed surgeries at the hospital include those that affect a child's mobility, such as procedures to correct curvatures of the spine.

Even before the pandemic, there's no question we weren't where we wanted to be in terms of timeliness and timelines for surgical procedures," said Squires, also vice-president of women's and children's health at Hamilton Health Sciences. But the pandemic has made that so much worse.

We're at a place now where 62 per cent are waiting beyond the clinically accepted recommended timeline for their particular surgery."

Squires points out those wait lists are for kids already in the system, and doesn't address the hundreds more waiting for an initial surgical consult, diagnostic imaging or even those who haven't yet been identified due to COVID constraints on primary care.

Waiting for a surgery for a kid is really significant," he said. It can mean missing school. It can disrupt the natural things of being a kid, like playing sports or playing with friends. It means they're not well-positioned to learn and to develop. And it's also associated quite often with suffering and with pain."

Megan Ogilvie is a Toronto-based health reporter for the Star. Follow her on Twitter: @megan_ogilvie