"Day by day, I watch more deterioration and every day there is more irreversible damage," Denise Quesnel says about the vision of her son, Noël Nikitiuk (left).

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When Noël Nikitiuk turned four months old, his mother sensed there might be an issue with his vision. By that age, the infant should have been able to begin tracking objects and faces. But instead his eyes trembled and aimed past his parents’ heads and beyond the moving toys and books placed in his line of sight.

Noël’s mother, Denise Quesnel, had him checked out by a doctor as soon as it was possible. After several delayed referrals to specialists in brain and eye conditions, an MRI finally ruled out a brain tumour or cancer in the summer of 2021, when Noël was eight months old.

But the mystery remains far from solved. Noël’s doctors at BC Children’s Hospital still don’t know the nature or proper treatment of his condition because there is no one to perform the necessary diagnostic test.

“We’ve been waiting 18 months for something that should take weeks,” said Quesnel from the family’s home in Port Coquitlam.

No patient group in B.C. has been spared from ballooning waits for screenings and diagnostic testing that could confirm life-altering illness as the pandemic and unprecedented respiratory illness season exacerbates a worsening chronic staff shortage across the province.

Some patients in B.C. have died before their first cancer treatment appointments, the Globe and Mail has reported. The staffing crunch has hit BC Children’s as well, with some heart surgeries cancelled or postponed because there isn’t enough staff to manage their recovery alongside urgent patients, The Tyee reported last month.

But parents of children with complex conditions like Noël’s say their children’s needs were pushed aside long before the pandemic. They fear a permanent regression in the quality of health care and of life their kids can expect.

Early diagnosis and treatment of brain and eye issues is essential, before children’s brains lose elasticity and become more set in adaptations to impairments. Noël’s doctors say his vision loss could be halted or even reversed with the right combination of surgery and supports like eye-patching or glasses.

Multiple requests to have the test performed in Alberta, Ontario or Washington state have been denied by health authorities as the critical window to minimize permanent damage to Noël’s vision closes.

“He already is more hesitant moving around, and there is a motor delay in his movement, but we don’t know what he sees and experiences,” said Quesnel, noting it’s possible her son only has vision in one eye.

“It’s difficult waiting. Day by day, I watch more deterioration and every day there is more irreversible damage.”

Noël is just one of many children with chronic and complex health conditions whose care is being delayed as British Columbia’s health-care system tries to keep up with a staffing crisis amidst a surge of COVID-19, flu and RSV cases.

“This failure has been a long, long time coming, especially since resources were shuffled around into adult health due to the pandemic,” said Quesnel, who is a volunteer health advocate, as well as mother to Noël and another son with complex health challenges.

Noël’s neuro-ophthalmologist ordered an electroretinogram, or ERG, test in April 2021 to investigate potential neurological links to his vision impairments.

The test measures the electrical responses of light-sensitive cells in the retinas of a patient’s eyes in response to different visual stimuli and needs to be performed by an electrophysiology technologist who is trained to work with children and operate pediatric-adapted equipment.

But the sole qualified technologist at BC Children’s became ill during the pandemic in 2020 and never returned to work, Quesnel was told. She says she has seen the job posted four separate times on the Provincial Health Services Authority’s website since her son’s referral was made last year. The test for adults, meanwhile, can be performed within a week, Quesnel was told by doctors.

Two technologist openings are still listed. One advertises the role as permanent and casual. The other advertises the role as permanent and full time.

PHSA has been trying to recruit someone to the role for seven months, after it was transitioned from a temporary leave coverage to a permanent role, BC Children’s Hospital’s executive director of clinical operations Trish Page told The Tyee in an emailed statement.

“The ERG role is very specialized and we have been recruiting at local colleges and advertising provincially, nationally as well as internationally. The pool of qualified candidates is relatively small worldwide,” Page wrote. “We are hoping for a permanent, full-time team member, but also want to provide flexibility to prospective employees, who would prefer to pick up casual hours at BC Children’s,” she added in a followup statement.

Quesnel pointed out many qualified people may not wish to stay in Vancouver or move to B.C. for casual work when the cost of living is so high, but Page did not comment on why one of the roles was casual when asked.

“We understand waiting for a test can be stressful and we apologize to the family and thank them for their patience,” Page wrote.

When asked whether the hospital tracks what proportion of children’s diagnostic tests are completed within recommended windows, as it does for cancer care, Page did not respond.

She said an ERG is used for further information about an illness involving the retina but there is no universal recommended window for it to take place.

Quesnel has asked Noël’s doctors several times to refer him for a test in Alberta or Washington state, but the request has been rejected by the health authority and province because the service is technically offered in B.C. The Hospital for Sick Children in Toronto told Quesnel in a phone call it could perform next-day tests, but the province won’t cover travel to Ontario or the test itself, which requires a referral.

B.C. only funds travel for medical services that are required but not available within the province.

“Sending a patient across provincial or national borders for an ERG is typically supported if it is expected to change the management of the patient’s care,” Page said.

Quesnel, who is a PhD student, can’t afford the travel, child care and missed work costs out of pocket.

She says if the position is not staffed, travel to another jurisdiction should be paid for. She has contacted her MLA, Minister of Public Safety and Solicitor General Mike Farnworth, Minister of Health Adrian Dix, the Patient Quality Care Office and the hospital multiple times to ask for the test and travel to be funded.

“It’s just dead end after dead end after dead end,” said Quesnel. “It feels like I’m just pleading with people to agree my kid’s life counts.”

One of Noël’s doctors said the symptoms the child presents are something she’s never seen in her career. Without the test, Noël’s doctors have told Quesnel the only other option for diagnosis would be open brain surgery to investigate his condition. But that carries serious risks of stroke and damage, and doctors don’t yet recommend it.

Quesnel says she feels helpless to help her son and sees his chances at a normal and healthy childhood slipping away.

“As parents it’s ingrained in us to do everything for our kids to keep them from harm,” she said. “To have to stand by and watch your kid not get the care he needs, it makes you feel like a failure.”

Quesnel wants to see her son’s test covered wherever it is available, and for BCCH to publicly report how long it takes children in need of diagnostic testing to be seen and how it impacts their health outcomes.

The Globe and Mail reported similar data about the deaths and worsened outcomes caused by delays in cancer diagnosis and care earlier this fall.

“Noël is not unusual. This is happening to so many children,” said Quesnel. “These windows are being blown right past the advised age of intervention, over and over and over, and we don’t know how many kids are getting sicker or dying.”

She feels lucky that Noël’s condition is not fatal, but says parents shouldn’t have to triage their children’s needs when inadequate resources are a collective problem.

“There should be enough resources in a healthy system to take care of everybody,” Quesnel said. “There shouldn’t be this competition for scraps.”

— This story was originally published by The Tyee.

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