06/30/2014 04:34 EDT | Updated 08/30/2014 05:59 EDT

Climb the Beanstalk: Program helps hospitalized kids hit development milestones

TORONTO - It won't just be Americans celebrating Independence Day this Friday. July 4 is Aurora Blomerus's first birthday, and the little girl who has defied some long medical odds will be leaving Toronto's Hospital for Sick Children, which has been her home since November.

Aurora has spent her short life in hospitals, here and in Pretoria, South Africa. She was born there with a condition called gastroschisis — some of her gastro-intestinal organs were outside her abdomen. It's a condition that can generally be successfully corrected with surgery.

In Aurora's case, however, most of her small intestine had died before she was born because a blood clot had cut off blood flow to the organ. It had to be removed the day after her birth, leaving her with only six centimetres of small intestine and 15 cm of colon — not nearly enough to draw nutrition from food.

Aurora gets most of her nutrients via a tube, requiring her to be hooked to equipment for all but six hours a day. She needs a bowel transplant but is now healthy enough to leave hospital while she waits for a donor organ to become available.

Her hospital stays have kept the little girl alive and she currently appears to be thriving. She chatters and grabs for toys and squawks when she is unhappy that something she wants is out of reach. It's all normal baby behaviour — but not necessarily skills that come easily to infants who call hospitals home.

Spending the first weeks, months and sometimes years of life in a hospital can seriously impede the normal development of a young tyke, sometimes depriving them of the stimulation and the opportunities to play that help babies learn to roll over, crawl, sit up and stand. Making sure a young child reaches these key milestones can get short shrift when the baby is a patient hooked to tubes and monitors in a hospital crib.

"We often thought: 'When is she going to do this or that?'" admitted Aurora's mother, Nicole Blomerus, a Vancouver native. Aurora's father, Harold, is South African.

"You're so focused on the medical issues and that's all that you really have time for. So even if it's a thought in the back of your head, you don't act on it," she said in an interview Monday.

Aurora's surgery left her with a condition called short bowel syndrome. When doctors in South Africa told Nicole and Harold Blomerus they could do nothing further for Aurora, Nicole went online to see if Toronto's Hospital for Sick Children might be able to treat their little girl.

They quickly received an affirmative answer, though it took four months to get Aurora to Toronto. By the time she arrived, she was very sick, her liver stressed by the diet she was on.

At Sick Kids, the family found Aurora's health-care team wasn't just concerned about her physical health. Staff from Sick Kids' Beanstalk Program approached the family to assess how the little girl was doing developmentally, devising a plan to involve everyone on Team Aurora — her parents, her health-care professionals and hospital volunteers — in helping the little girl catch up to where children her age would be.

The idea behind the program, which the staff developed about 12 years ago, is to treat the children like babies, not just patients.

"What can we do better to minimize the impact of being in the hospital for these children and help them have the best developmental outcome?" explains Alaine Rogers, an occupational therapist who is part of the Beanstalk team.

"We can't control the medical situation they have going on and how that will impact their lives. But we can definitely provide them with as many opportunities to engage in play, interaction, exploring their environment, getting them out of bed, getting them moving to the greatest of our ability to counteract some of that impact, to help them meet their developmental milestones."

Physiotherapist Stephanie So said 10 years ago children like Aurora would not have survived. With improvements in medicine, they now can. But that means care must include helping young patients be ready to live their lives like other children, able to play and walk and explore their worlds.

"We need to focus on their development," So said.

Nicole and Harold Blomerus see the impact the work has had on Aurora.

"It was very incremental, the whole way. They gave us a few tasks to work on initially. And when she'd get good at those things they'd identify something else that had to worked on and we moved forward. And you know, she's really caught up, thanks to them," Nicole said.

"Even though she's still sick, now we have the joy of (seeing her) clapping her hands or waving bye-bye and hello. And standing up — she's just recently started taking a few steps if we encourage her.

"So it is really nice to be able to focus on those happy things. The things that any normal parent wants to look at when they have a baby, right?"