Toronto family worries their son aging out of pediatric care will be like ‘falling off a cliff’

Jacob has Pelizaeus-Merzbacher Disease (PMD), an ultra-rare degenerative disease attacking the central nervous system. It affects an estimated one in 200,000 to one in 500,000 kids — mostly boys. There’s no cure and no standard course of treatment.

At age 12, he became a patient in the Complex Care Program at Toronto’s SickKids hospital. It streamlines appointments that offer quick access to a long list of providers who function together as Jacob’s team, including general medicine, neurology, respirology and more.

But now, at 21, Jacob’s aged out of pediatric care.

He’s not the only one; as advances in pediatric care mean minors with complex medical needs are living longer, healthier lives — it also means more of them are aging out of the very system designed to care for them.

SickKids says their services can be adequately replaced by specialists in the adult-care system. But White is worried the so-called transition will be akin to her son’s care “falling off a cliff.”

So she’s filed a human rights complaint, pleading to allow Jacob to continue receiving care at SickKids.

“I want Jacob to be seen as a person first and not simply as a body in a wheelchair,” White told White Coat, Black Art‘s Dr. Brian Goldman.

A team of specialists needed

Jacob has never been able to walk or talk. PMD attacks a slew of brain and bodily functions and requires a group of specialists to manage a long list of symptoms.

Anna Tan, one of Jacob’s nurses, spends hours a day suctioning his airways because his vocal cords are paralyzed; a couple of teaspoons of liquid can cause him to choke. He needs eyes on him at all times, in case he stops breathing.

As the years have gone on, Jacob’s symptoms have become increasingly life-threatening.

“A couple weeks ago, he was having some episodes of what looked like seizures that were new to me because in my nine years I didn’t really see him have those,” Tan told Goldman during a visit to White and Trossman’s home in north central Toronto.

As of Sept. 11 this year, SickKids no longer cares for Jacob. Normally, minors age out of pediatric care at 18. Jacob continued to qualify until 21, due to the pandemic and other factors. But due to the pandemic and other factors, Jacob’s transition out of complex care was delayed.

Where once nearly all his needs could be met by a co-ordinated team at SickKids, the hospital’s final transition plan for Jacob encompasses specialists at five different hospitals spread out over the Greater Toronto Area.

For some patients, those specialists can potentially be fragmented across hundreds of kilometres throughout a province.

“You may have a gastroenterologist who’s in Barrie, and a cardiologist who’s in Orillia, and your neurologist in Huntsville, and then your family doctor is in Bracebridge. And you don’t have a nurse practitioner who is co-ordinating all that care,” said Dr. Michelle Gordon, director of Orillia Soldiers’ Memorial Hospital’s complex care clinic for medically fragile children in Orillia, Ont.

“It’s an issue that keeps us up at night because it’s really, really difficult to care for the patients with the intensity that we care for them and then transition them to a system that doesn’t serve their needs.”

White says she’s spoken to doctors who told her the transition simply won’t reach the standard they’ve been used to with SickKids.

“It’s not going to be as focused. You’re going to feel much more alone. It’s not going to be as supportive,” she said.

She says her research turned up “a whole lot of nothing” for the adult equivalent to what was available to Jacob at SickKids.

Human rights complaint

On Sept. 9, two days before Jacob was aged out, White and her husband, Andrew Trossman, filed a complaint against SickKids with the Human Rights Tribunal of Ontario, arguing that SickKids was arbitrarily denying Jacob proper care because of his age. The family has pleaded that Jacob should continue receiving care at SickKids.

In their response to the complaint, SickKids denied that the decision was arbitrary. It said policy dictated by Ontario’s Ministry of Health does not typically allow SickKids to treat patients over 18 years of age.

Their statement also said pediatricians at SickKids are not eligible for malpractice protection while providing care for patients older than 18.

SickKids states that it has been working on a plan to transition Jacob into adult care since 2017. But the family refused to consent to the sharing of Jacob’s personal health information with other practitioners outside of SickKids.

That refusal makes it extremely challenging to implement the plan for the transition of care, SickKids said.

White says they withheld Jacob’s information over fears that by agreeing to share it, she would be left out of future decisions about his care.

Pediatricians not trained for adult care: doctor

Gordon and others at her clinic help to build transition plans for patients in and around Orillia.

That could include ensuring overlap between pediatric and adult-care providers lasting from six to 12 months, so the latter can get up to speed for a patient, especially if their needs are particularly complex.

As more kids with complex needs grow older, however, the system may run into previously unseen stress points.

“Increasingly these kids are living healthier and living longer and transitioning into an adult system that isn’t ready for them,” she said.

As they get older, Gordon says, a transition becomes more necessary as pediatricians may not be trained in complications that may be associated with adulthood.

“We can’t do such a phenomenal job supporting these kids and getting them into adulthood and then not support them as they continue to grow older. But it’s a challenging problem to fix,” said Gordon.

Another complaint — and a long road ahead

Jacob’s parents aren’t the first to take a legal route to try to secure better care as their kids age out of pediatric care.

In 2017, the Manitoba Human Rights Commission said the provincial government discriminated against two young adults, Tyson Sylvester and Amy Hampton, along with other adults with severe lifelong disabilities, based on their age.

Their lawyer, Joëlle Pastora Sala, argued that their cases were examples of broader systemic barriers to inclusion and equality for adults with complex disabilities.

“No province is doing this well,” Sala told CBC Radio recently.

Following the 2017 decision, the Manitoba government launched a pilot project with 30 adults with complex needs — including Sylvester and Hampton — based on recommendations by a special committee formed in 2021.

That pilot launched earlier in 2023 and is set to last 30 months.

“The goal is to create, essentially, a new model of service delivery for adults with complex disabilities in Manitoba,” said Sala.

The Manitoba government and the Winnipeg Regional Health Authority have “committed to make best efforts” to act on the findings of the pilot project when it’s done, said Sala.

“If our pilot project is successful and if the Manitoba government decides to implement the recommendations, then I think it does send a message to other adults and family members throughout Canada,” she said.

‘How can I tell him?’

In the meantime, it’s status quo for Jacob Trossman. He hasn’t had a medical crisis since he’s aged out of SickKids’ care.

Marcy White so far hasn’t told him about the change.

“How can I tell him? Doctors don’t want to treat you. The people that have known you … for most of your life don’t want anything to do with you. I can’t tell him that,” she said.