At Toronto’s SickKids hospital, two thirds on wait list have missed their surgery ‘window’

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Four-year-old Emmett Fisch was born with one leg four centimetres shorter than the other. Right now, the difference is barely perceptible. Emmett runs and jumps as well as any kindergartner with the help of a lift in his right sneaker. But if his condition is left untreated, the discrepancy will grow to 18 centimetres by the time he’s 16, rendering him too off-kilter to walk.

Emmett was supposed to undergo the first of four surgeries to even out his legs at Toronto’s Hospital for Sick Children in the summer of 2019. Nearly a year and a half later, he and his parents, Adam Fisch and Marla Klug of North York, are still waiting for a surgery date.

As Canada’s second wave of COVID-19 grows at an alarming pace, the backlog in pediatric surgeries is a reminder of how the coronavirus can harm the health of people it never infects, including kids.

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Wait times for essential but non-urgent pediatric surgeries have always been long in Canada, but they’ve become seemingly interminable in the age of the coronavirus. At SickKids, the largest pediatric hospital in the country, two-thirds of children in the queue are now outside the “window” for when their surgeries should have been performed. That figure was one-third of children a year ago, before non-urgent surgeries were cancelled in the spring during the first wave of the pandemic.

As a result, children with conditions such as scoliosis, cleft palate, hip dysplasia and limb deficiencies are losing developmental ground they won’t be able to make up, said Simon Kelley, associate chief of surgery at SickKids.

“You can’t turn back the clock,” he said. “You miss a development window and it’s gone.”

Pediatric hospitals are unlikely to meet the fate of adult hospitals in hot spots such as Winnipeg, Edmonton and Quebec City, which have scaled back non-urgent surgeries to make staff and space available for a surge of COVID-19 patients. This is because COVID-19 is gentler on children than on adults.

But even if their operating rooms remain open to scheduled surgeries through the winter, pediatric hospitals will still be hard-pressed to prevent harm to some of the children at the back of the line, said Lindy Samson, the chief of staff and chief medical officer at CHEO, formerly the Children’s Hospital of Eastern Ontario.

“[COVID-19] has changed the way we do absolutely everything here at the hospital,” she said. From maintaining physical distancing to donning and doffing PPE to performing more deep-cleaning, “our ability to do the same number of surgeries in a given day in a given operating room has been greatly impacted.”

At SickKids, there were 4,400 patients on the wait list for scheduled surgery at the end of September, up from 3,800 before the pandemic. There were 6,700 children in line for an MRI, up 25 per cent since the coronavirus arrived.

Although the situation is particularly dire at SickKids, children’s hospitals across the country are struggling with similar challenges. In a joint commentary published last month in the Canadian Medical Association Journal (CMAJ), the surgical chiefs of Canada’s pediatric hospitals urged provincial governments to prioritize specialty surgeries for children.

They estimated that 7,600 pediatric operations were postponed between mid-March and late May or early June, depending on the province. About 4,000 Canadian children who should have joined surgical waiting lists didn’t because they couldn’t access diagnostic procedures such as MRI scans or face-to-face appointments with specialists.

“Making the decision that a child needs an operation usually means you have to be able to see them in person and put hands on them,” said Erik Skarsgard, surgeon-in-chief at BC Children’s Hospital. “There are children out there we haven’t even seen yet.”

The pandemic has forced hundreds of thousands of Canadian adults to wait for non-urgent operations and diagnostic procedures as well. But as Dr. Samson pointed out, children are not just small adults. Their bodies and brains grow so quickly that some surgeries become less effective the longer they’re put off. “It’s all about the number of kids that have, as a result of COVID, missed that window,” she said. “That’s what’s keeping us all up at night.”

Dr. Kelley and SickKids have asked the Ontario government for an extra $24-million a year to help tackle the wait-list. They need to pay more nurses, anesthesiologists and other staff to keep scheduled-surgery operating rooms running into the evening and on the weekends more often, Dr. Kelley said.

The Ontario Ministry of Health said in a statement that the government is investing $283.7-million in clearing the backlog of all surgeries – both adult and pediatric. The funding total includes “specific targeted investments” at four Ontario pediatric hospitals: SickKids, CHEO, McMaster Children’s Hospital and London’s Children’s Hospital. The ministry declined to say how much was earmarked for each hospital.

In the case of Emmett Fisch, the first procedure he needs is a reconstruction of his hip joint called a SUPERhip. (SUPER stands for Systematic Utilitarian Procedure for Extremity Reconstruction.) A prelude to at least three other surgeries, the SUPERhip operation was supposed to have been done between the ages of 2 and 4, ideally around age 3. Emmett turned 4 in July.

“With a SUPERhip procedure, the hip would form much more normally if I was able to do it a couple of years ago,” Dr. Kelley said of Emmett, his patient. “Each year that passes his remodelling capacity – his ability to develop and reshape and form his own hip – is diminished. So you get a progressive deterioration in the results.”

On top of that, delaying the first surgery delays others.

Emmett will need at least two lengthening procedures during his childhood. Each time, Dr. Kelley will break his right thighbone and attach a metal frame with a dial to the outside of his leg. Gradually the dial will be turned, pulling his femur further apart to allow new bone to grow in the space between. When Emmett is in his early teens, Dr. Kelley will perform a non-invasive surgery on the boy’s left leg to remove the growth plate, preventing his long leg from growing any longer.

Mr. Fisch, a financial planner, and Ms. Klug, a property manager, try their best to manage the anxiety that comes with waiting for their son’s surgery date. A stoic pair, they’re grateful that Emmett has no trouble keeping up with his classmates.

But they notice that Emmett is starting to bump up against the limits of what he can accomplish on his uneven legs. When they put him on the ice last year, he struggled to skate while balancing on the toe of his right foot.

“We don’t know if waiting longer makes his recovery harder,” Mr. Fisch said. “We hope not. But it’s out of our hands at this point.”

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