Sick Kids’ struggle
Aging hospital is desperate for space, improved facilities
It’s Day 4 for Justin Jewell in an isolation room at The Hospital for Sick Children — a diminutive cell, webbed with tangled wires that staff have to navigate to get around the 17-year-old’s bed.
His parents, Jim and Lorraine, move about the cramped room as well as they can. Justin’s guitar leans against the wall and there’s a crystal salt lamp by the window. Medical equipment hangs on cold metal posts. There isn’t enough air filtration in the unit outside. With a severely compromised immune system, Justin can’t leave the room under any circumstances. And there’s no washroom inside, either. “He can’t shower until he’s out of isolation, which could take a month,” Lorraine told the Star. “When he does have to use the bathroom he has to use a urinal or a commode, and then leave it out in the hall.”
Sick Kids’ bone marrow transplant unit — where Justin will spend Christmas this year — is responsible for more than half of all bone marrow transplants in Canada. But like so many other units at Sick Kids, it’s critically out of date. Sick Kids is edging on 70 years old. One of the main buildings was designed in the 1940s. When Dr. Mike Apkon — the hospital’s CEO — walked the Star through the building earlier this week, he pointed out equipment cluttering hallways along the way. There just isn’t space for everything.
The tour was meant to give context to the $1.3-billion fundraising campaign the hospital launched in October, to rebuild Sick Kids into a hospital for the future.
But the tour also displayed the glaring reality of patients today. This will be their reality for the next decade, as the project is underway.
The neonatal intensive care unit is one of the first stops. The room is filled with beeping machines and tiny babies, whose fluttering heartbeats are the undivided focus of huddled parents. Some of these families started at other hospitals, where they had individual rooms.
In one of the units, five-month-old Xavier and his mom adjust after months of privacy in a single room.
He was there pre-surgery, which repaired a connection between his windpipe and esophagus. But since then, he’s been battling post-operative recovery, and this weekend developed a bout of pneumonia.
A tuft of ink-black hair, long dark lashes and strong, tiny fists are overshadowed by tubes — clear, orange and blue — going into his body. Orange tape keeps tubes in his nostrils; one in his arm delivers morphine.
He’s one of several babies in the darkly lit room. Each has family members huddled over them, wearily watching from chairs.
Dr. Estelle Gauda’s voice was soft as she explained the ward-style room, where red lines denote specific zones for each patient.
“Current North American code requires a separation in a multi-bed room at eight feet between both beds,” Apkon pointed out. “There’s zero in this case.” Not only do the close quarters make it difficult to control sound, light and the spread of infections, but they expose young patients and their families to the trauma of other cases. If another parent’s baby starts to decompensate, and medical staff have to call a code, all the other parents have to leave.
“But they’re certainly well aware of it happening and what happened after,” Apkon said. “Because they (can)
“There’s a reason why 50 per cent of kids that have a serious, life-threatening condition end up with post-traumatic stress disorder.” DR. MIKE APKON SICK KIDS’ CEO
come back to a bed space that’s empty. There’s a reason why 50 per cent of kids that have a serious, lifethreatening condition end up with post-traumatic stress disorder.”
Kids are sometimes woken in the middle of the night to other families grieving beside them. And that grief is a public process, too, without private rooms.
“You can imagine the experience of having to do that, and address that, in this kind of environment,” Apkon added, shaking his head.
Every time a baby has to be moved out of the unit for a procedure, Gauda explained that their risk for infection increases. The newly designed hospital unit will bring procedures right to the child’s bedside.
In the meantime, hospital staff are trying their best to make-do with the confined quarters. Privacy screens are set up in the unit to allow parents crucial skin-to-skin contact with their baby.
And in the waiting room, there are more family members still — refusing to leave, but without their own space to stay. One morning this week, two clutch bright knit blankets close, lie on the waiting chairs and try to get some sleep.