Mackenzie Mitchell has spent all nine months of her life in hospital.

First at Mount Sinai Hospital, where she was born. Then at the Hospital for Sick Children, where she continued to receive specialized care for her diagnosis of congenital myotonic dystrophy, a form of muscular dystrophy.

And finally for these last seven months at Toronto’s Holland Bloorview Kids Rehabilitation Hospital. Here Mackenzie receives 24-7 care in the hospital’s complex continuing care unit that has 19 beds for some of the province’s most medically fragile children.

Mackenzie has a feeding tube, a tracheostomy — a surgical opening in her neck for breathing support — and needs someone with specialized training to monitor her oxygen levels and vital signs, administer medications four times a day and suction secretions from her throat.

Her parents, Allison and Roger, have been planning to take her home for months, eager to be together as a family. They want to spend full days and nights with their daughter, to always see her smile and long-lashed brown eyes.

Mackenzie was scheduled to be discharged near the end of September, though the date was pushed back a few weeks to ensure she was medically stable. Even with that extra time — and despite every effort — it has still taken Allison and Roger more than two months to secure enough home nursing support to safely take their daughter home.

“We have her crib set up and ready to go in our living room,” Allison said. “When I look over and I see it empty, it’s a little bit of a heartbreak.”

This fall and winter, as waves of kids sick with respiratory infections poured into Ontario hospitals, headlines focused on swamped emergency departments and overflowing pediatric ICUs.

The long-simmering crisis in children’s health care played out in prime time as pediatric leaders scrambled to find space for a flood of patients during the devastating viral season.

But other, lesser-known aspects of the pediatric system, from rehabilitation services to home care supports, have also been under immense strain, the result of chronic underfunding and years of wear from the COVID-19 pandemic.

Like others in children’s health, leaders at Holland Bloorview said the all-out response needed to get through this viral surge highlights the fragility of the province’s pediatric system.

“We just don’t have the number of beds that we need,” said Irene Andress, Holland Bloorview’s chief nursing executive and vice-president of programs and services.

“We are going to have to tolerate some inefficiency in our system to be sustainable. You can’t be 100 per cent occupied all the time; that’s not the way it should work. People can’t work 100 per cent of the time at full speed. We need to be able to say it’s OK to operate with some open beds because we know that the next week, or the week after, demand is going to go back up.”

Holland Bloorview started to experience the full force of the viral surge in mid-November as ICUs at acute care children’s hospitals soared past 110 per cent occupancy, then 120 per cent.

Its three in-patient units were operating some days near or above capacity, straining the abilities of staff to care for their medically complex patients.

There were outbreaks and staffing shortages due to illness as influenza and RSV swept through the community.

And other children’s hospitals, severely pressed for space, were asking Holland Bloorview to take more and more of their patients, many needing higher and higher levels of care.

The hospital has never before had so many requests to admit patients, Dr. Golda Milo-Manson, a developmental pediatrician and Holland Bloorview’s vice-president of medicine and academic affairs, told the Star in December.

“Because children’s hospitals are under such pressures, because they need every bed, we are being asked to admit children … much, much earlier than we normally would,” she said. “And we are seeing them coming to us in much more complex situations.”

These include children recovering from urgent surgeries for brain tumours or those needing intensive rehab following traumatic injuries, such as from a car crash. Milo-Manson said many have significant developmental disabilities and may not be verbal, while others with complex medical needs may require a ventilator.

“Rather than coming to us for rehabilitation when they are medically stable, they are coming to us with many more acute care needs,” she said. “Our nurses, therapists and physicians, they have had to get used to seeing kids who are much more acutely ill.”

"We just don't have the number of beds that we need," says Irene Andress, Holland Bloorview's chief nursing executive and vice-president of programs and services.

Holland Bloorview has three in-patient units with a total of 63 beds. One offers specialized orthopedic and developmental rehabilitation, one is for patients who need brain injury rehabilitation, including cancer, stroke and trauma recovery patients, and one provides complex continuing care for patients with multiple needs, such as advanced feeding tubes and breathing supports.

Compared to a similar pre-pandemic period, the hospital saw a 94 per cent increase in the number of complex continuing care patients getting admitted.

To make space, staff had to discharge their own patients back to their homes, sometimes sooner than normal. But staffing shortages in home care and long wait times for mental health and social supports in the community meant that was not easy — and not always possible — for children with complex medical needs.

“We can’t send patients home until we know they will have safe care,” Milo-Manson said, noting children who’ve had intensive rehab at the hospital need follow-up in the community, including for physio and occupational or speech therapy, something that can be hard to find.

“Some of our children require either nightly nurses or daily nursing because they have feeding tubes or breathing tubes and require overnight ventilation, and getting appropriately trained nurses can be very challenging.”

Mackenzie is one of those patients.

Congenital myotonic dystrophy is a rare, inherited disease that affects every child differently. For Mackenzie, the condition impacts her muscles and her breathing, which is why she requires 24-7 care.

As October passed, then November, Allison and Roger knew Holland Bloorview needed Mackenzie’s bed for other patients. They also desperately wanted to be together as a family at their home in Pontypool, a small town about 100 kilometres east of Toronto.

They were each spending up to three hours a day driving to and from the hospital. And while they were making the best of the long, tiring days, it was getting harder for Allison and Roger to leave their little girl at night.

“It’ll be nice to have her with us all the time, to start to have a little bit of normalcy back in our lives,” Allison said a few days before Mackenzie was to be discharged in December.

“I’m looking forward to taking her out for a walk around the neighbourhood,” added Roger.

The Mitchells, fully trained in Mackenzie’s medical needs, eventually secured two nurses to provide round-the-clock care at their home on weekdays. But even after posting an ad on Facebook pleading for nursing care, the family did not have a weekend nurse by the time Mackenzie left Holland Bloorview.

This means Allison or Roger has to stay up all night with Mackenzie on weekend nights to monitor her and ensure she doesn’t accidentally pull out her feeding or breathing tubes. The family is only funded for care provided by nurses, not for personal support workers.

Allison and Roger said they have experienced first hand the dedication of health-care professionals caring for their daughter.

Dr. Golda Milo-Manson, Holland Bloorview's vice-president of medicine and academic affairs, told the Star in December that the hospital was fielding an unprecedented number of requests to take patients from acute care facilities during the viral surge.

They said they’ve also seen up close how stretched the pediatric system is. As a newborn, Mackenzie had to stay at Mount Sinai Hospital for two and a half months, outgrowing her incubator as the family waited for a bed at the Hospital for Sick Children.

“It was really hard to see so many other babies around me come and go with their parents,” said Allison, recalling the early days with Mackenzie.

Now, six weeks after leaving Holland Bloorview, Allison and Roger have settled into a routine at home with their daughter.

They still don’t have a regular weekend nurse, though one of Mackenzie’s nurses has offered to come for the occasional Sunday. They said they’re enjoying the many little things they had long looked forward to: meals together, introducing Mackenzie to family and friends, holding her whenever they want and singing and playing in their living room.

“She loves floor time, especially with her dad,” Allison said. “And then with me, she loves when we dance and sing. She loves “Twinkle, Twinkle” and the “Itsy Bitsy Spider.”

Back at Holland Bloorview, staff continue to recover from the weeks-long race to care for patients.

While calls to accept higher volumes of patients have eased, Milo-Manson said pressures will continue, especially as scheduled surgeries for children come back online after being postponed for two months during the viral surge. Scheduled surgeries at SickKids resumed Jan. 16; the backlog is now more than 6,000 procedures.

Allison and Roger Mitchell with 10-month-old Mackenzie at Holland Bloorview two days before her Dec. 8 discharge. They're now enjoying spending time together at home, taking walks and introducing Mackenzie to friends and family, but still need nursing help.

Wait times at Holland Bloorview for kids who need surgery continue to grow. In the last year, wait times for orthopedic assessments at the hospital for conditions including cerebral palsy peaked at 507 days — much higher than the hospital’s target of 137 days.

“Some of these children are currently waiting for surgery at acute care facilities and the hospital is hopeful that as the surgical backlogs begin to clear, that these wait times will go down,” a spokesperson for Holland Bloorview said in an email.

Even before surgeries were cancelled, Milo-Manson said many children were already waiting months too long for procedures, a long-standing problem in the province.

She said children will now be forced to wait longer for their surgeries, leaving many in chronic pain and affecting their ability to go to school and participate fully with their families. Some children will deteriorate while they wait for their procedure, meaning they may go from needing a walker to a wheelchair to be mobile. Or they could wait so long that they need a more complex surgery than what was determined during their initial assessment.

“We have always had in pediatrics bare-bone — if that — coverage to take care of our kids,” Milo-Manson said. “Now, we’re seeing a system that is past its tipping point.”