Where medicine created possibilities, a new centre offers a compass for the journey ahead

Two decades ago, certain diagnoses meant near-certain outcomes. Children with complex neuromuscular disorders rarely lived to see kindergarten. Premature infants with underdeveloped lungs wouldn’t survive past their first hours. Rare neurological conditions left families with few answers—and even fewer treatments.

Medical science has since redrawn these boundaries. Revolutionary advances—ranging from genetic sequencing to targeted therapies and life-sustaining technologies—have turned some fatal conditions into chronic ones. Many children who once faced insurmountable odds are now growing up, defying expectations and living longer lives.

Yet many families find themselves adrift in unknown waters without maps, guides or clear paths forward. For them, survival of their child marks only the beginning of an isolating journey they’re navigating alone.

Medicine’s unexplored depths

Breakthroughs in pediatric medicine over the decades have altered the trajectory of countless young lives. Dr. Hal Siden, medical director with the new BC Children’s Hospital centre for health complexity (currently the Slocan Site Redevelopment Project), explains that these triumphs created new challenges.

“There’s now a large number of children whose treatment stretches across their entire lives,” he said. “The problem is that we haven’t built systems to support them and their complex health needs.”

These children—roughly 9,000 across BC and the Yukon—exist in a population defined as having health complexity. They represent less than 1% of just over one million children in the province, yet account for more than one-third of all pediatric hospitalizations and one-third of health care dollars spent on children. About 2,500 of these children have the highest levels of

heath complexity across the province and territory.

They live with complex, chronic conditions affecting multiple organs. Many require assistance with basic daily function, including mobility, feeding and communication. They may face vision, hearing or developmental challenges. Their well-being often depends on sophisticated medical technologies—tracheostomies, feeding tubes, mobility devices and portable ventilators. They are in and out of clinics, hospitals and therapy programs at BC Children’s and in their communities.

Navigators without training

The toll on their families is enormous. Parents spend sleepless nights next to the beeping sounds of monitoring machines as they carefully give medications on precise schedules. Their calendars fill with specialist appointments while their homes transform into miniature intensive care units. Siblings step into caregiving roles far beyond their years.

“Boxes of medical supplies line my hallway closets, emails between therapists and specialists are ongoing, I give handover to the nurse who will tend to my daughter overnight,” said one parent in the recently published report by BC Complex Kids.^* “Alarms go off, reminding me to silence the feeding pump, check her heart rate, or determine if the oxygen concentrator needs to be turned up. I am constantly on alert for anything to happen—emergency bag ready to go by the front door.”

“Each day revolves around their child’s care needs,” Dr. Siden added. “They’re waking up at dawn to catch ferries for appointments, spending their entire day at the hospital, and then repeating it all over again the next week.”

These families coordinate care between dozens of specialists. Each one focuses on a specific aspect of their child’s health, but no one oversees the complete picture. That will soon change. In 2028, a groundbreaking new facility will open its doors: the BC Children’s Hospital centre for health complexity. This $309.9 million centre—through funding from the BC Government and a $60-million fundraising initiative from BC Children’s Hospital Foundation—will launch an entirely new approach to supporting children with complex medical needs.

In search of a co-captain

“We talk extensively about coordination of care for kids and families with health complexity. But you can’t just navigate a ship—you need a captain and crew,” Dr. Siden explained. “Unfortunately, almost every family I meet feels forced into that captain role without training. Most don’t have the health care knowledge, nursing expertise or medical background to handle this level of complexity.”

The new centre aims to change this dynamic. Each family will have a dedicated team—including a nurse, social worker and logistics navigator—that will coordinate their care, help manage appointments and improve access to services within and beyond the health care system. An innovative electronic platform will enhance collaboration between providers and families, ensuring critical information isn’t lost in transition.

Medical crises don’t always adhere to clinic hours. The centre will offer real-time support when families need it most. “If families need help on weekends or evenings, they’ll have someone they can call immediately,” says Elizabeth Stanford, who is leading the clinical planning for the centre for health complexity. “That simply doesn’t exist right now.”

Bridging vast distances

For those living outside Vancouver, accessing specialized care adds another layer of difficulty. Some families travel hours each way for appointments. The costs of transportation, accommodation, meals and time away from work compound the already heavy burden these families carry. Often, travel isn’t possible given the complexity of a child’s health condition and the distance required.

The centre’s design confronts this reality through technology and training. Consult rooms will feature interactive systems allowing specialists, community physicians and family members to participate in a patient’s care simultaneously, no matter where they are located.

“With the press of a single button, we’ll connect instantly with medical teams or families hundreds of kilometres away,” says Dr. Siden. “If we’re teaching a parent in the centre how to use a feeding tube, family members at home can learn alongside them. Bringing together all these people through technology and making it as seamless as possible is one of our bold goals.”

A harbour for healing

The emotional toll of raising a child with complex health needs can be as overwhelming as the logistical challenges. The centre will offer specialized counselling addressing ongoing grief—whether mourning the loss of typical childhood experiences, managing caregiver stress or fighting the isolation that often accompanies rare conditions.

One of the centre’s key features will be its 16 family suites, which provide short, pre-planned overnight stays, when needed, for children and their families during care transitions or when learning new care techniques. Each suite will have two adjoining rooms—one for the child and one for caregivers and family—with a fully accessible bathroom.

The centre’s physical design features a three-level accessible ramp in the atrium that replaces traditional staircases. Built with sustainable mass timber and flooded with natural light, the centre will include welcoming recreational spaces, a teaching kitchen, purposeful art and a space designed specifically for siblings.

Charting a new course together

With few existing models worldwide, BC Children’s Hospital is creating a new map that could set new standards of care for children with complex health needs globally, and possibly inform adult care models as well.

What makes the centre truly groundbreaking is how it was conceived—through direct collaboration with nearly 400 individuals who intimately understand these challenges, including former patients, parents and caregivers, siblings, clinical and non-clinical staff, operational leaders, community health and service providers, and Indigenous partners. Families have tested mock-ups of child and family suites, and Indigenous advisors have helped create culturally safe spaces, including All Nations spaces, ceremonial areas and a healing garden with plants of medicinal significance.

For thousands of children with health complexity and their families, the journey ahead remains daunting. But in a few years, many families won’t have to navigate it alone. Medical advances that created this population of children once seemed unthinkable. Building a system that supports their journeys is the next frontier—one that’s about to be crossed.

A small population with a massive impact

35% of healthcare dollars for children go to those with health complexity.

30-40% of hospital beds at BC Children’s are occupied by kids with health complexity at any given time.

About 9,000 children in BC and the Yukon live with health complexity.

Learn more about the centre for health complexity Here

^{* Beyond Survival: Recommendations for Transforming Support Systems for Children & Youth with Medical Complexity and Their Families in British Columbia}