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Grace Ofori lies on her hospital bed, staring at the television screen. Her mother, Hannah Ofori, eases a Toronto Maple Leafs T-shirt over her head and down past the tracheotomy tube. Then come the tiny shorts, socks and bib, all in matching white and blue.
This is their morning ritual now, since a mystery virus attacked four-year-old Grace's brain last September. It begins around 8 a.m. and continues for more than an hour: first a handful of injected drugs, then tube suctions, a bath, moisturizer, diaper change, teeth cleaning, more suctioning and mopping of drool, mostly with help from a nurse.
"Okay Gracie, Mom is doing your hair," Mrs. Ofori says, combing the curly strands into pig-tails. "I know you love it. That's why I'm doing it."
Grace says nothing. She doesn't strut to a mirror the way she would have before a cruel lottery led her here, to Room 350 of one of Canada's largest rehabilitation hospitals for children.
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Last year, more Canadian children died from traumatic brain injuries than from all pediatric cancers combined. While sudden infections, tumours and strokes cause many of those injuries, the majority are caused by trauma. Of 16,811 Canadians hospitalized with traumatic brain injuries in 2003-2004, the largest proportion — 30 per cent — were children and youth, according to the most recent data from the Canadian Institute of Health Information.
This year, if a constant national pattern repeats, most of those traumatic injuries will occur in the summer, when children pour out of schools and onto bikes, roads, pool decks and diving boards.
Survivors of the worst cases will wind up in rehabilitation hospitals like this one — Bloorview Kids Rehab in Toronto — where patients make the difficult transition from intensive care to home.
Twenty years ago, doctors believed these children's young, growing brains gave them an advantage over adults with similar injuries. But as patients survived longer and researchers tracked their progress, they realized that assumption was wrong. Doctors now say the younger the patient, the more stunted their recovery, especially for children under 5.
"We call it the myth of acquired brain injuries — that kids do better," says Peter Rumney, a pediatrician who heads Bloorview's rehabilitation program. Dr. Rumney, who has spent 20 years treating and researching the effects of pediatric brain injury, has a bleak prognosis for the 100 inpatients who enter Bloorview each year. "Nobody that leaves here is going to be the same as they were before," he says.
But in the 3-West wing where rehab for acquired brain injuries occurs, children like Grace and their families do their best to prove him wrong.
The virus struck around 3 a.m. on Sept. 4, 2006, the day before Grace was supposed to start kindergarten. Grace had been complaining of headaches, and Mrs. Ofori thought maybe it was the pull of her fresh braids.
She laid her sleepless daughter's head on her lap, and began to unweave her hair. Suddenly her husband, a United Church minister, interrupted.
"Listen to Grace," he said. Then Mrs. Ofori heard the gurgling. She lifted Grace's face and saw blank eyes.
The family, including Grace's three siblings, spent the next 51/2 months in McMaster Children's Hospital in Hamilton, about an hour north of their home in Selkirk, Ont., a small town on the shores of Lake Erie. Doctors performed test after test, but couldn't pinpoint what had caused Grace's brain swelling, seizures, and several brushes with death.
On Feb. 21, Grace, who was by then medically stable, was moved to Bloorview to begin rehabilitation. She could not breathe independently, make eye contact, speak or sit up on her own.
At Bloorview, the average brain rehab inpatient's stay ranges from six weeks to three months, but it could last much longer. Patients are up to 19 years old. About half are here because of trauma, and the rest because of infection, stroke, tumours and rare medical conditions. Each patient, based on individual needs, undergoes a daily regimen of therapy — physio, occupational, speech — and also attends school.
Many parents sleep beside their children in narrow pullout chairs. Some won't sleep at home for months, until their children are well enough to visit on weekends. Although Mrs. Ofori's husband, Emmanuel, and three other children, ages 3, 11 and 13, have returned to work and school in Selkirk, Mrs. Ofori has not slept at home since last Sept. 4.
Stephen, 3, sometimes asks his mom to come home, but "I just can't leave her," Mrs. Ofori says. "I don't want her to be alone."
Timothy Myland, a social worker who has worked with families of brain-injured children for 17 years, says that in intensive care, parents' emotions are violently jerked around. But parents are also extremely focused on keeping their child alive — and often everything else is abandoned, he says.
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