Rebecca Archer lovingly places a pair of small glasses on a shelf filled with memorabilia like trinkets and photos. They belonged to her 10-year-old daughter, Renae, who suddenly died after a measles infection.
“She was just really intelligent. Just a really happy child, always smiling,” she remembers.
Renae was just five months old when she got the measles – too young to be vaccinated, but unable to avoid being exposed during an outbreak in Manchester, England, in 2013.
The infant was hospitalized, but recovered. For the next 10 years, Renae had no other medical issues, her mom says.
But the measles virus was sitting dormant in her brain for years. When it woke up, Renae started having seizures. Then, she couldn’t speak, or eat, or even stay conscious.
“The fact that it was measles, I just couldn’t get my head around it,” Archer said.
With measles cases on the rise in Canada at rates unseen in almost three decades — and vaccination coverage for childhood vaccines like the measles, mumps and rubella (MMR) shot falling since the pandemic — Archer and others who have suffered from measles complications are pleading that those who can get vaccinated do.
When Renae’s seizures began, she was suffering from a rare complication of measles called subacute sclerosing panencephalitis, or SSPE. Out of 100,000 measles cases, it happens to less than a dozen people.
But for kids like Renae who get measles before they’re 15 months old, the risk level rises significantly – to one in 609.
It is almost always fatal, and there’s little doctors can do to help — a hard truth for Archer to accept.
“I always had it in my mind, once we found out what was actually wrong, Renae, we’ll get her back to herself again,” she said.
Instead, doctors told Archer her first-born daughter had no brain activity. There was nothing to do – except decide when to turn off her life-support machines.
The mother says she didn’t imagine measles could do this much damage. Now, her grief is tinged with rage: she says that Renae would still be alive if others were immunized against measles.
“You never think it’s going to happen to you,” she said.
“It does make me really angry, and make me want to help people understand how serious it is.”
Dr. Michelle Barton has seen a case of SSPE once in her career – not in Canada, but in a developing country.
“It’s a sad picture to watch, because there is really not much you can do.”
It’s not a complication physicians would normally consider in countries like Canada, where measles was declared eliminated in 1998, said Barton, who heads the pediatric infectious diseases division at the Children’s Hospital at London Health Sciences Centre in Ontario.
With the virus continuing to spread in Canada, with cases in every province, Barton fears physicians may need to start thinking about measles complications like SSPE more frequently.
“In this outbreak, there have been no deaths. And we are grateful for that,” said Barton, who has been seeing some of the sickest patients in the province — and doing everything possible to prevent a death.
Mother urges parents to vaccinate kids after daughter’s measles death
Alberta has been seeing a sharp increase in the past few weeks — on Thursday, the province reported 313 cases since the outbreaks began in March.
Saskatchewan, too, is seeing a rapid increase in cases. Cases there have more than doubled in the past week, and the province’s top doctor says he’s expecting daily increases for the next weeks, or even months.
But the heart of the spread continues to be Ontario, which is reporting 1,453 cases so far this year, the vast majority in those not fully vaccinated against the highly-contagious virus.
Dr. Upton Allen, the head of the division of infectious diseases at Toronto’s Hospital for Sick Children (SickKids) says those numbers are troubling.
For children with a healthy immune system, he says, there is a risk of complications like pneumonia, or a bad ear infection, in about one in every 10 cases. Measles can also cause encephalitis – inflammation of the brain at a rate of one per 1,000, he said.
The risk level is much higher for those whose immune systems are compromised, Allen said.
“They need to be protected,” he said, “we protect them by vaccinating those around them.”
Those who do survive measles, may be left with lifelong complications — like 73-year old Barbara Leonhard, who lives in Columbia, Mo.
It was the late 1950s, before a measles vaccine was available. Leonhard, who was six at the time, remembers her legs giving out, losing the ability to speak, before everything went black. The measles virus had caused her brain to swell, and she fell into a 30-day coma.
When she woke up, she was told she would never walk again.
“It felt like I was condemned, like a sentence was passed,” she remembers.
Leonhard says she didn’t accept that. She spent months, pulling herself out of the wheelchair, dragging her feet in the living room, teaching herself to walk again. She was successful — but she remains deeply scarred.
“It was traumatic and scary,” she said. Today, she struggles with muscle weakness — something her neurologist attributes as a lasting effect of her encephalitis, all those years ago.
She’s pleading with parents to vaccinate their kids against measles, if they haven’t done so already.
“You have to think about the life of your child, what you’re risking.”
Rebecca Archer, still grieving her daughter, hopes by sharing her family’s story, more people will decide to get vaccinated: enough to reach herd immunity — 95 per cent — which she says could have saved her daughter.
Archer says she’s sharing her story, with the hope others will understand the stakes — so no other parent would have to go through what she did.
