9 years after rare surgery saved her, girl confronts lifelong challenges

A pioneering surgical procedure gave Ocane McKenzie her best shot at a long life, but as she approaches her ninth birthday, it's clear that life isn't going to be an easy one.

Ocane's mother Vicki McKenzie was 31 weeks pregnant when doctors inserted a needle through her abdomen and into Ocane's heart, where they inflated a tiny balloon to widen a defective valve. The in utero procedure had been done only twice before in Canada, and Ocane was the first unborn patient to survive.

She became a minor celebrity as doctors and her family shared the story of the operation's successalong with their hopes for her future.

"We just figured that she would be a little girl that could do anything that all the other girls, or all the other kids could do [at]her age, but maybe not last as long," said Vicki McKenzie, whose family of five lives in Gatineau. "So if she would run, [she]wouldn't run as far as everybody else."

Running any distance, however, remains an impossible dream for Ocane. She's unable to walk, unable to speakand needs to be spoon-fed blended food. The risk of choking is ever-present. From October to May, bouts of pneumonia are inevitable.A hospital bag is always packed.

'I was destroyed'

McKenzie knew her newborn had suffered strokes in the weeks following her birth, which she described as a complication of follow-up surgeries done soon after Ocanewas born. But she didn't know they'd led to extensive brain damage.

McKenzie said she first became concerned when at three months old,Ocanewasn't moving normally and one of her hands was always closed and tense.

"I was destroyed," McKenzie said. "We had such high hopes that she would be normal. So it was very hard, and honestly, I've been mourning it.... It's [only]been about a year now that I stopped comparing her to other kids her age."

But she's had no second thoughts about the surgical treatment she chose for her daughter. Without the groundbreaking operation, McKenzie said,Ocanewould most likely have been stillborn. Half her heart would have suffered damage such that even if she'd managed to survive, she'd have required multiple operations in childhood.

"It was successful," McKenzie said. "What they did saved her heart, and that was the goal."

A complicated gift

The family is now helping Ocane make the most of the complicated gift delivered by medical science, and celebrating her small steps toward independence.

"She's a happy kid," McKenzie said. "She suffers healthwise, but I don't think she regrets what she can't do."

While Ocane can't speak, she understands both French and English. At home, the family communicates with her using a mix of yes/no questions and improvised sign language, skills McKenzie wasn't always sure her daughter would learn.

"We didn't know if she would smile. We didn't know if she would understand anything."

At school, which Ocane attends when her health allows, she communicates with a tablet computer technology she's also mastered to poston Facebook and to play video games with her older brothers.

Physically, she remains limited. When Ocane learned to catch a ball her mother shed tears of joy. She's also getting the hang of moving around a room on her bottom, which means she doesn't have to rely as much on her family to help her in and out of a wheelchair at home.

"It's been amazing to see her travel and to get to her toy cupboard," McKenzie said. "[If]she wants to watch TV, she can reach up and get the remote."

Wait lists for therapy

Ocane's family wants her to continue to build independence, but even as a Canadian medical first, she's hindered by limited public funding for supports that would help.

She's been on a waiting list for speech therapy, occupational therapy and physical therapy for nearly three years. What's more, meeting her needs in the family's home of 13 years has become ever more difficult.

Ocane can't wash her hands by herself in the bathroom because even though she can get through the door in her wheelchair and turn on the tap, it's too tight for her to turn around. She can separate the laundry but can't put it away in bedrooms on another floor. In the kitchenshe loves to put away dishes, but can only manage the cutlery that goes in drawers.

McKenzie dreams of an accessible bungalow where she could do all those things and more on her own.

"When she wakes up in the morning, to just be able to put her in her chair and let her decide where she wants to go," McKenzie said.

Family crowdfunding fornew home

The family has received funding for devices such as lifts outside and on the stairs down to the basement family room, but won't qualify for more for at least a few years, McKenzie said, so they've been hunting unsuccessfully for a home that they can afford to modify in the same school district.

After she hurt herself a few weeks ago carrying Ocane down the stairs, McKenzie decided to start crowdfunding for the family's preferred solution: a custom-built home on a new lot nearby, to be financed largely fromthe sale of their current home. They're hoping to raise half the cost of property, which McKenzie estimates will be about $50,000.

"She'll have dignity," McKenzie said. "We can't give her that here. She's getting older and we change her [diapers]on the living room floor."

McKenzie has already drawn up plans to take to a builder, buoyed by dreams of a home where Ocane can live comfortably for the rest of her life.

"Some days I get discouraged. I just think, how are we going to keep doing this for 20, 25, 30 years?" McKenzie said.

"Then I look at her and realize how far she's gone and how hard she fights, and it makes me keep fighting."