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Home care for kids - SickKids award helps keep tots out of hospital

Programs to help critically ill children stay at home with their families are getting a $100,000 shot in the arm.

The SickKids Foundation will announce Monday the winner of its first annual Rotman Award for Pediatric Home Care Innovation.

The prize, donated by philanthropist Janis Rotman, goes to a leading Canadian agency that helps to bridge the gap between hospital and home for severely sick kids.

"Children thrive at home as long as they have appropriate services and care providers to meet their needs and those of their families. That's what the Rotman Award is all about," Ryerson University nursing professor Karen Spalding said.

It will raise the profile of pediatric home care and recognizes that children require home and community services not currently on the radar of health policy makers, she said.

MINI-HOSPITAL

As the latest advances in medical science and technology enable these kids to survive, families are increasingly dependent on state-of-the-art pediatric home and palliative care.

Without a team of six nurses and the mini-hospital Kelly Kilbride has set up in the living room of her Georgetown home, her medically fragile, technology-dependent 5-year-old son Kirkland would be confined to a sterile hospital bed.

Instead, his two older brothers love running over to give him a kiss when they come home from school, she and her husband are able to have some respite from his round-the-clock regime of care, and he's the centre of the household.

Kilbride's son has mitochondrial disease, a rare, incurable, untreatable and progressive disorder.

Two years ago, he was classified as palliative. Although he is non-verbal, developmentally delayed and unable to move, she insists he thrives in the bosom of his family.

"When he's in the hospital, our whole family is dysfunctional, but at least this way, we have a family unit," she said. "Kirkland is aware of more than he can express. He enjoys the hustle and bustle of the house and likes the company."

Until relatively recently, the focus of home care was on end of life care, not on childhood, said Claire Fortier, SickKids Foundation vice-president of grants and finance.

One major issue for families needing pediatric home care is co-ordinating a variety of different practitioners -- respiratory therapists, nurses, palliative care workers, personal care workers and occupational therapists.

"It's like running a business in your home," Fortier said.

This year's Rotman winner, chosen by a group of pediatric care experts, has developed innovative ways of helping families co-ordinate all these different services and also provides a telephone call service with access to a pediatric expert 24 hours a day, seven days a week, she said.

Although an estimated 8 to 15% of all people needing home care are children under the age of 18, there is little statistical information on services offered or exactly who is benefitting from them, Spalding said.

"We do know that children who are able to be cared for at home have increased survival rates and their parents want them at home," she said.

'WE WANTED HIM HOME'

Lucas Haley-Atkinson was 10 months old when he came in contact with E. coli and suffered cardiac arrest. It took so long to revive him, he suffered brain damage and a seizure disorder and now needs 24-hour care, a feeding tube and suctioning.

"We didn't know what we were going to do at first," his mother, Annette Haley, said. "We were devastated by the whole thing, but we wanted him home with us."

Now, at age 7, Lucas has 229 hours of home care each month, attends school daily and spends time in several Toronto respite care homes so his parents and siblings can have more time together.

"When he's away, I can't wait to see him again, we miss him so much," Haley said. "We often visit him in respite care and two of his home-care nurses visit him there, too. They treat him like he's their own son."

Kilbride considers her son's nurses part of the family.

"I couldn't leave him with a friend or a member of my family, but when my husband and I snuggle on the sofa, a nurse will be right there, and we're comfortable with that," she said.

These caregivers allow Kilbride, a teacher before Kirkland was born, the freedom to supply teach once in a while.

"They've given me back a bit of my life," she said.