A troubling rise in measles cases has a Toronto doctor remembering a little girl who became blind, noncommunicative and incontinent after contracting the virus.

Dr. Barry Goldlist was a medical student in 1973 when he saw the child, who was about 10, at the Hospital for Sick Children. She had developed subacute sclerosing panencephalitis, or SSPE, a rare and fatal nervous system disease that typically strikes those who were infected with measles before their second birthday.

"It was a horrible thing to see this young girl who was brain dead. She died in that hospital," said Goldlist, who went on to practise internal medicine and is now a geriatrician at Mount Sinai Hospital.

"We were told that one in 1,000 people who got measles had a serious complication and one in 10,000 could die. You think that's pretty rare but millions of kids got it before vaccination. So even though the percentage was low the absolute numbers were considerable."

Before the measles vaccine was introduced in Canada in 1963, infections were common because the virus causes one of the most highly contagious diseases. Goldlist said many of his peers have recently been discussing their experiences as children, including his sister-in-law, who recalled a measles rash all over her body as a preschooler.

"Despite having soft flannel pyjamas, she couldn't button them up because it hurt so much when they touched her skin," said Goldlist.

He said he also knows a woman in her 50s who has lived with brain damage after being infected with measles at age three, making it impossible for her to hold down a job. 

He and other health-care providers are concerned that myths and misinformation about routine childhood vaccines could leave many children vulnerable to preventable infectious diseases as part of what's become an emotionally charged issue. They say the fact that people have not seen the suffering and devastation that measles causes or remember it has also contributed to complacency around vaccination.

While measles was declared eliminated in Canada in 1998 after two-dose vaccine schedules were adopted, pockets of outbreaks have occurred in some non- or under-vaccinated communities, sometimes linked to religious beliefs as well as travel to countries where vaccination programs are not so robust. 

Missed or postponed measles vaccination during the COVID-19 pandemic led to a jump in cases worldwide but anti-vaccination beliefs, shared in online parent groups and elsewhere, started gaining support long before then.

The World Health Organization and the U.S. Centers for Disease Control and Prevention said in a joint news release late last year that the increase in measles outbreaks and deaths in many countries is "staggering" but not unexpected given declining vaccination rates. In low-income countries, where the risk of death from measles is highest, the vaccination rates are only 66 per cent due to disruptions during the COVID-19 pandemic, the WHO said.

The Public Health Agency of Canada said the 2021 childhood National Immunization Coverage Survey shows 91.6 per cent of two-year-old kids had received at least one dose of a vaccine against measles. But just over 79 per cent of children aged seven had received two doses. 

Canada has set a coverage goal of 95 per cent for all recommended childhood vaccines by 2025.  

The Public Health Agency of Canada said that as of Thursday, there have been 29 cases of measles so far this year in four provinces — Quebec, Ontario, British Columbia and Saskatchewan — compared to three cases across Canada by the same time last year. The current cases were mostly related to travel, but included those with no links to travel or other infections, sparking concern about community spread.

Dr. Janice Heard, a community pediatrician in Calgary, said some parents choose not to get their children vaccinated or are hesitant because they believe myths that measles or other diseases no longer exist, are not serious and that breastfeeding protects babies from infection.

"I don't think people realize that these diseases that we're preventing with childhood vaccines, and adult boosters, are life threatening to lots of people, and that they can cause a lot of long-term consequences," said Heard, a member of the Canadian Paediatric Society's public education advisory committee.

"Ten per cent of kids who get measles will have complications, and these are not little complications. It's things like seizures, pneumonia and long-term brain damage that never goes away."

Breastfeeding provides a small dose of antibodies and is encouraged, but a baby exposed to potentially life-threatening diseases such as pertussis, or whooping cough, will not be protected, Heard said. Vaccines stimulate a child's own immune system to provide antibodies and develop immunity against diseases, she added.

Some parents believe their children will be protected because others have been vaccinated, Heard said.

"It takes a very high percentage of people being vaccinated, over 90 per cent, to actually confer herd immunity to the population that isn't vaccinated. And there are certain diseases where herd immunity doesn't work, but people don't think about that, like tetanus for one. If you're not immunized, you're not protected," she said of the infection caused by bacteria commonly found in soil. It can enter the body through a wound or cut.

Heard said it's important for the medical profession to tackle misinformation and vaccine hesitancy one parent at a time through education and a non-judgmental approach.

Dr. Cora Constantinescu, a pediatric infectious disease specialist at Alberta Children's Hospital in Calgary, has a good understanding of the fears that some parents endure about routine childhood vaccination.

When it came time to get her nearly one-year-old son vaccinated against measles, mumps and rubella, she hesitated as she wondered if he could be harmed.

Constantinescu was working for the Public Health Agency of Canada at the time and reviewing relatively rare adverse events following immunization. Her son had already received routine vaccinations at two, four and six months because Constantinescu was convinced they were life-saving interventions.

"All of a sudden, I started questioning the validity and importance of those vaccines. And I started worrying about whether or not there would be some kind of side-effects," said Constantinescu, whose son is now 12.

"I was a pretty keen vaccinator and then I had my first child and realized that even I needed some help and support. I just wondered, 'Is my child going to be that highly exceptional child that is going to somehow never get the disease?'"

Constantinescu ultimately had her son — and her two younger children — vaccinated against measles.

Her experience led to the creation of a vaccine hesitancy clinic in 2016 at the Calgary hospital where she emphasizes listening to parents' concerns and building trust.

Many vaccine-hesitant parents change their minds when they are supported, Constantinescu said, and they include those whose anxieties are due to misinformation.

"I have a number of parents who have actually started with one or two vaccines and then felt more comfortable and did bring the children up to date. It's a process, and it takes patience," she said.

"It breaks my heart a little. Almost every patient that comes through has a really emotional appointment and they all say 'I'm not an anti-vaxxer. I want to help my child.' To me, those are the parents that need us the most, because they're trying really hard to make good decisions."

With measles spreading in multiple countries, Constantinescu said it's important to learn lessons from the pandemic by using "vaccine champions" including religious leaders or elders — as many Indigenous communities did — to talk to parents.

She said health-care professionals remain a trusted source of information and need to communicate the threat of a disease in a way that is specific to the person or family, instead of focusing on collective responsibility.

"Altruism is good but the reality is that parents make decisions that are in the interest of their child," she said. "I worry about losing the silent majority of people who are pro-vaccine and will have gone ahead and vaccinated their children. And I think we need to highlight that when it comes to the routine immunization schedule."

"It's not just about correcting misinformation. If it was, we would have done it. You have to show support, you have to build trust and then you give a little bit of information."

This report by The Canadian Press was first published March 15, 2024.

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