'They don't care about me, mom': Teen's scoliosis surgery delayed five times
Nathan Gilson’s wait took a mental and physical toll on the entire family
It took over a year and five delayed surgeries before 16-year-old Nathan Gilson finally got the scoliosis surgery he needed. But not before the disease — and the long wait — took a toll on him and his family.
"It does make me angry. It just makes me more sad and disappointed than angry," he told White Coat, Black Art host Dr. Brian Goldman.
The Waterloo, Ont., teen is one of many who have faced multiple delays for elective surgeries, as the health-care system struggles with a backlog created by the COVID-19 pandemic, a surge of viral respiratory illness, and a strain of the flu.
The Canadian Institute for Health Information estimates that 600,000 fewer operations were done during the first year-and-a-half of the pandemic. And that is still having ripple effects. In January, nearly 12,000 children in Ontario were on a wait-list for surgery at pediatric hospitals.
And according to Dr. Ronit Mesterman, medical director of developmental pediatric rehabilitation at McMaster Children's Hospital, a delayed surgery can have a long-lasting impact on both children and their parents.
"It creates a lack of trust in our system, it makes you feel like, 'I'm told I need this but the system cannot deliver it,'" said Mesterman.
Mesterman says the uncertainty creates even more stress, on top of the worries about the medical situation.
"There's a very wide variability on what patients and families can tolerate … even if you have the best resilience, it's very stressful."
How it started
Nathan's parents first realized their son had something going on when he was 14 and just starting Grade 9, in 2021.
"One day the kids were swimming and one of his friends said, 'What's that lump on your back?' And as parents we had not even noticed it and I feel horrible about it now," said Alan Gilson, Nathan's father.
He had already been having some knee and ankle issues, so Alan and his wife Shelley decided it was time to see the doctor.
The doctor sent Nathan to McMaster Children's Hospital in Hamilton to be looked at by a team there. Nathan was told he had scoliosis, the abnormal curvature of the spine, and that he would be put on a two-and-a-half year wait-list for surgery, due to the pandemic.
Untreated scoliosis can cause pain and deformity, as well as a risk of heart and lung damage. Nathan also had challenges doing everyday physical activities.
"It was kind of just messing with my everyday life. I couldn't really do many of the activities that my friends were doing. I couldn't sit down at school for an extended amount of time," said Nathan.
"I just needed the surgery to get rid of the pain."
Five cancellations
All they could do was wait. The first surgery date came earlier than expected, set for for April 5, 2022, which offered some hope. But as the family prepared for the operation, they got a call from McMaster saying the surgery had to be postponed, because a more urgent case took priority.
"You could have knocked me over with a feather because I had his bags packed ready by the door," said Shelley.
"I had all my ducks lined up in a row and in the blink of an eye the rug was pulled out from under us and I was absolutely devastated as a mother."
Meanwhile, Nathan was monitored. In the fall of 2022, X-rays revealed his scoliosis had gotten worse. His spine had shifted 10 degrees over the course of three months.
And there was an emotional toll as well. The condition made Nathan self-conscious. He didn't want to swim with his friends, because he didn't want to take off his shirt to go into the pool. Other kids were teasing him.
"It affected him emotionally, mentally. It was very, very difficult. He felt that people were looking at him in different ways. They noticed he was different. I felt that his self-esteem was suffering," said Shelley.
He said, 'Everybody else is more important than me.' And I broke down into tears that night.… That broke me as a parent.- Shelley Gilson
"It was heartbreaking because you want so much to help your children. But for this particular problem, there was nothing I or Alan could do."
But surgery dates kept being cancelled. Often the call would come weeks before the surgery, but on the fifth delay, it came just a few hours beforehand.
"That one hurt. That one, there was tears, there was swearing … there was frustration," said Alan.
And Shelley was finding it increasingly difficult to be strong for her son.
"The most heartbreaking thing that I heard from Nathan after that last postponement was, 'They don't care about me, mom,'" said Shelley.
"He actually said that to me. He said, 'Everybody else is more important than me.' And I broke down into tears that night.… That broke me as a parent."
High cost of relief
When it came time for the surgery again a few months later, Nathan's parents were doubtful it would actually happen.
"We kind of had a joke between Alan and I that, within a couple of days of a surgery, nobody was to answer the phone because we were so tired of receiving bad news. We just wanted it to go through," said Shelley.
Then it did go through. On Nov. 29, 2022, Nathan was finally able to get the surgery he needed. The procedure took 15 hours, and was full of its own ups and downs, but it was successful.
"We couldn't have asked for a better recovery. I would say textbook. There haven't been any complications. We're blessed that way. It has been incredible watching him recover," said Alan.
To help clear the backlog, pediatric hospitals in Ontario are hoping to shift less complicated operations to community hospitals, according to an emailed statement from Ontario Health. Pediatric hospitals are also meeting with the provincial health authority to look for new fixes.
Dr. Mesterman says the problem isn't just delayed surgeries, but cancelled appointments as well. And she says the solution is an increase in funding and physicians.
"We are lacking, chronically," said Mesterman.
"When we don't get an increase in budget, it actually means a decrease [in services] because salaries still have to go up."
Shelley and Alan Gilson don't hold any resentment toward the staff at McMaster. They understood that people who were in life-threatening situations should take priority. But Shelley is still frustrated with how it all played out.
"I have to be honest to say I am angry," said Shelley.
"I'm angry with our provincial government, our federal government, because our health-care system is in crisis. It's failing."
ABOUT THE AUTHOR
Interviews with the Gilson family produced by Jeff Goodes
