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Seven days with her baby, a lifetime as a mother

Seven days with her baby, a lifetime as a mother

Before she even knew she was pregnant, Andrea Onley had a dream that foretold her very first Mother’s Day would be spent without her daughter.

“A week before I found out I was carrying her, I had a dream that I was holding a little baby girl, and in the dream I heard a voice that said, ‘You don’t get to keep her long,’” the Whitby woman said of her daughter, Sarah Teddy Ann Onley, who was born Sept. 2 and passed away in her mother’s arms just seven days later.

“I didn’t know I was pregnant at the time, so I didn’t think much of the dream. But looking back now, I think maybe it was God telling me to enjoy the short time I would have with her.”

It wasn’t until seven weeks after that dream prophesy that those ominous words would come flooding back to Onley, as she and her husband Jonathan’s worst fears were realized.

A routine scan revealed that their unborn child had a rare brain abnormality. The baby would likely be born blind, deaf, vegetative, and completely non-responsive, doctors said.

A week after that came an even bigger blow. The Onleys were told the baby had a heart condition that was almost certainly fatal. Sarah was given just a one per cent chance of being born alive.

“I’m not going to pretend like that was easy to hear – it was devastating. But I guess the one positive we took away from the experience was that, because we found out so early, we were able to mourn and move forward,” Onley said, noting doctors were confident she’d miscarry and urged her to terminate the pregnancy.

“I consider myself pro-choice…My choice was to give Sarah every chance she could get. I wanted to give my daughter every opportunity to survive and thrive.”

Describing her pregnancy with Sarah as a “wonderful” one, Onley said she and Jonathan squeezed every last moment of it for all the joy it contained.

First, the expectant couple travelled back to Michigan where they went to school together and showed their unborn daughter “mommy and daddy’s first apartment.”

Then, intent that Sarah “make her mark on the world” despite her dire diagnosis, they embarked on a month-long backpacking trip to Europe while pregnant with her – climbing Mount Vesuvius in Naples, checking out the Berlin Wall in Germany, visiting the Eiffel Tower in Paris.

Back at home, when the time came to induce her, Onley said Sarah’s prognosis was still bleak, so she decided to have her doctors at the Hospital for Sick Children (SickKids) turn off all the monitors during her delivery.

“There’s nothing you can do, you just have to be brave and face life as it happens,” she said of Sarah’s delivery, during which her daughter once again thwarted all odds and miraculously survived. “I can’t explain it to you – she was just magic.”

Told that Sarah’s heart condition was ultimately inoperable, the Onleys spent three round-the-clock days and nights keeping constant vigil over their daughter’s tiny, betubed body in the SickKids NICU, before they were transferred to a private room to receive palliative care.

Despite the severe deficits doctors predicted she would be born with, Onley said Sarah was remarkably alert – opening her one eye, grabbing for her parents’ fingers, reacting to the sound of her father’s lullabies, and even smiling.

“When I imagine heaven, I imagine the three of us in that room together,” Onley said, describing that time alone with her daughter as precious. “Every time I laid eyes on her, it was like falling in love again. Every time I saw her face, it was the most pure kind of love.”

Still, the couple knew their time with Sarah would be short.

On Sept. 8, seven days after she was born, they made the heart-wrenching decision to disconnect Sarah from her breathing tube and let her go.

“We knew in our hearts that if we kept her any longer, it would be selfishly for our needs, not for her benefit,” Onley said. “The love we have for our children is this amazing love where you will do whatever is in her best interests at all times, even if it destroys you.”

After removing her from ventilation, a full minute went by before Sarah took her first gasping breath on her own, again defying doctors’ expectations.

Finally freed from all the tubes and wires that had confined her to the hospital, the Onleys were able to take Sarah outside that “glorious” late summer afternoon, to sit on a bench together and soak up the sun for the first and last time as a family of three.

Sarah died a few hours later.

“I know she stuck around just to give us that one very special day. Her body and her soul were ready to go,” Onley said. “When she passed away, I was holding her and I just knew. I felt her spirit leave.”

Thankful for the short time they were granted with their daughter, the Onleys have since launched the Sarah Onley Legacy Project .

“Sarah changed our lives for the better, so now we want the world to know her name, to know her impact,” Onley said, noting the goal of the project is to support special needs children around the world.

During last weekend’s Goodlife Fitness Toronto Marathon, the Onleys’ family and friends banded together as Team #SarahStrength to raise more than $25,000 under the banner of the legacy project as a special thank you to the SickKids NICU for their “incredible support and love.”

Next summer, they hope to embark on a cross-country bike ride to the east coast in Sarah’s name, with all fundraising proceeds to be geared toward the construction of a fully accessible playground in Whitby, where children of all abilities can play together.

But this weekend, to mark Mother’s Day, Onley and her husband are shifting the focus of their late daughter’s legacy project to a global issue with their support of effect: hope’s Protect the Child program.

All donations to the program – which provides life-saving Vitamin A supplements and hookworm, roundworm, and whipworm treatment to children and women in Kenya – are matched three times over by the federal government.

Helping another mother protect her child a world away is the best gift Onley said she could possibly hope to give in honour of her “sweet Sarah” on this, her first Mother’s Day.

“Because of our health care system here in Canada, I was given every opportunity to know my daughter and to make sure she had every opportunity at her best chance of health,” Onley said.

“So, it brings my heart so much joy to know that, in Sarah’s memory, mothers and their children in Kenya are going to have that same feeling because of the Protect the Child program. “My only hope for them is that they get 70 years instead of just seven days.”

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