Last summer, after numerous emails and calls to The Hospital for Sick Children (SickKids), a Toronto mother was finally told the surgery her son had been awaiting for over two years was still several years away.
The boy’s mother, Jessica (who asked TorontoToday to use only her first name to protect her son’s privacy), said she felt “overwhelming panic” at news of the extended wait.
“How long is it going to be now?” she asked.
As of last summer, Jessica’s son was one of more than about 700 children on a waiting list at SickKids Hospital to receive surgery for hypospadias. This is a condition where a child is born with the opening of the urethra on the underside of the penis, rather than the tip.
Hypospadias is typically mild, affecting about five in every 1,000 boys. But for kids with severe or moderate cases, as Jessica’s son has, doctors usually recommend corrective surgery before a child is 18 months old.
Research has found that delaying the surgery can come with medical complications, such as urinary blockages. Studies have also found that timely surgery results in better physical and psychological patient outcomes.
Jessica said as a result of the condition, her son, now three-and-a-half years old, can’t pee standing up — a reality that could be the source of teasing as he gets older.
“It’s not a life of death situation, but it’s also the kind of thing that little kids feel self-conscious about; when you’re different,” she said.
Despite the medical consensus that it’s best for children to receive the surgery before their second birthday, many Toronto kids are waiting far longer for urological care.
Kids waiting years for surgical care
Provincial data shows more than half of the children needing urological surgical care from SickKids Hospital are waiting longer for their operations than the target timeframe set by the government.
The delay is the worst for children whose urinary conditions are deemed moderate.
The province uses a four-stage classification for surgery urgency. Kids needing emergency surgery are priority one and the least urgent surgeries are deemed priority four.
Children in surgery priority category four are waiting an average of five times longer for urological surgery at SickKids than the target set by the province for their procedures.
That’s an average wait of 906 days from when a patient develops a surgery plan to the actual operation, with the province’s target being 182 days.
In 2020, SickKids staff sent letters to some families of children on the hypospadias waiting list, informing them surgery timelines would be delayed amidst the pandemic.
Rebecca, another mom of a child with hypospadias, said in 2022 SickKids informed her that her son, then three years old, would wait another two to four years for surgery.
Concerned about the delay in care for her child, Rebecca sought care at McMaster Children's Hospital in Hamilton.
While doctors at McMaster initially said her son was not eligible for care as their address was out of the hospital’s catchment area, he received surgery there in 2023 after Rebecca spoke with the media about her son’s case.
“I feel like the harder you advocate for your family, the further you get along. And that's not fair,” she said.
SickKids aiming to clear the backlog
SickKids Hospital did not respond to questions from TorontoToday by the publication deadline.
In November 2022, SickKids Hospital CEO Dr. Ronald Cohn told CBC the facility was doing "everything humanly possible" to reduce the surgical backlog affecting children with hypospadias.
In 2023, SickKids performed 68 hypospadias surgeries, according to information provided to Jessica by the hospital’s patient care staff.
In August, a member of SickKids Hospital’s patient care team told Jessica, by email, that the hospital’s surgical care team was aware of the hypospadias waiting list and “putting their weight behind” coming up with solutions.
“In September, we are beginning hypospadias-specific days in the [operating room], to help us move through our waitlist faster in 2024 and beyond,” the staff member wrote.
In an emailed statement, a spokesperson for the Ministry of Health did not answer questions from TorontoToday about the lengthy wait-times for urological pediatric surgical care at SickKids.
“In 2023, our government announced the largest investment in pediatric care in the province’s history, investing an additional $330 million each year to support high-priority pediatric initiatives in every corner of the province,” the spokesperson said.
The investment has not made a difference for Jessica and her son, however.
This summer, after her child turned three years old, the Toronto mom decided they could no longer wait and they would seek care in the United States.
Unable to pay for the surgeries themselves, they turned to GoFundMe.
A ‘miracle of love’
Told by SickKids staff her son would be waiting several additional years for surgery, Jessica created a GoFundMe and asked for help paying for her child’s treatment.
The result, she said, was nothing short of “phenomenal.”
Within a few weeks, the entire $50,000 target had been met — enough to cover the two surgeries her son is likely to need at a hospital in the United States.
Jessica said she and her family are incredibly grateful for the support. But having felt the need to turn to GoFundMe came with drawbacks, she said.
“It was a miracle of love, and it also sucked,” she said.
Prior to the launch of the GoFundMe, Jessica said she had not told many people about her son’s medical situation, as she did not want to compromise his privacy as he ages.
While the GoFundMe was a success, it was also an incredibly emotional experience, she said.
“You don’t want to have to pick up the phone and call everyone you knew from high school to ask them for money for your son’s penis, right? But that’s what we did, and it worked,” Jessica said.
“It’s not the thing that you think is going to happen to you in Canada.”
68 surgeries performed last year
Jessica said the experience she had with the patient care team at SickKids Hospital last summer was excellent.
However, she said she wished the hospital had been more transparent with her family earlier on in their journey about the waiting list for care.
Had she been told at the time of her son’s diagnosis that he would likely be waiting until he was at least five years old for the surgeries, she said she would have made alternative plans.
“I don’t have money. I rent my house. I don’t come from a wealthy family … I don't have $50,000 or $100,000 sitting around to spend on surgeries,” Jessica said.
The Toronto mom said that had she known the wait-times, she would have gotten a second job to earn more money to try to pay for the surgery out of the country.
She said her family is no longer fundraising for her son’s care. Her choice to speak with TorontoToday was motivated by a desire to help the other hundreds of families who remain on the waiting list.
“There are kids born today in Toronto who are going to be going on that wait list and they have no idea that at the rate they are going they could be waiting a decade,” she said.
‘Losing faith’
The Toronto mom, born in the United States, said she wanted to have her children in Canada because she believed if they ever had a medical crisis, they’d get timely care.
Now, that belief has been shaken.
“One of the most emotionally crippling pieces of all this is completely losing faith in the system,” she said.
In February Jessica’s son will have his first hypospadias surgery in the United States.
