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 corrected fairly easily, with surgery.
In Aurora's case, however, most of her small intestine had essentially died because a blood clot had prevented 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. That isn't nearly enough to draw nutrition from food and Aurora needs a gastro-intestinal transplant.
Her hospital stays have kept the little girl alive. Still, calling a hospital home can seriously impede the normal development of a young tyke.
Learning to roll over, crawl, sit up and pull oneself up are developmental milestones babies hit in and around the first year of life. But making sure a young child reaches them 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 who contacted Sick Kids about treating her daughter when doctors in Pretoria told her they could do nothing further for Aurora. 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.
But when the family managed to get a very sick Aurora to Toronto, a team that runs Sick Kids's Beanstalk Program approached the family to assess how the little girl was doing developmentally. They offered to devise a plan so that everyone involved in Aurora's care – her parents, her health-care team and volunteers – could help the little girl catch up with where she should 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."
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 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?"