My daughter’s name means “full of life.” A life that we owe to Sainte-Justine. A life that she can live to the fullest because of you.

Our home is a two-hour drive away from Montreal. We had absolutely no plans to go into the city. But that all changed the day of my nuchal translucency screening test at a nearby clinic.

It was supposed to be a routine ultrasound — an opportunity to get a “sneak peek” before we let our friends and family know we were expecting. But a suspicious-looking lump on the baby’s neck threw us for a loop.

Was it the umbilical cord? A sign of a chromosomal disorder? We left dejected and deflated, without any answers to our questions. And with an appointment at Sainte-Justine.

That’s where, after the holidays, the specialists found a hole in her tiny heart. The sophisticated equipment they have and the expertise they’ve developed because of your support are what allowed them to determine that our baby had what’s known as tetralogy of Fallot, a serious congenital heart defect.

A high-risk delivery. A major surgical procedure in the first year of her life. Lifelong appointments with a cardiologist… Once we got over the shock of what we would be dealing with, we started to feel more confident. Her condition was treatable with surgery. And we had the best people in our corner to face the challenges ahead.

The place that love built

Viviane’s regular appointments with the mobile cardiology clinic began when she was barely two weeks old. We met up with Sainte-Justine’s experts at a location near our house. Dr. Anne Fournier, her cardiologist, had her put on a pulse oximeter so we could watch her blood oxygen levels. A respiratory therapist even came to our house to show us how it worked. The whole team took such amazing care of us. But the therapist suspected something was wrong.

The day we were scheduled to learn how to work the device, Viviane’s blood oxygen levels plummeted.

We rushed her to Sainte-Justine. ‘Stop her from crying so she doesn’t become oxygen-deprived.’ All the way there, I kept her calm. To soothe her. And to soothe my own fears of losing her.

As soon as we got to Sainte-Justine, the intensive care team leapt into action. Her little body was covered in tubes. Dr. Nancy Poirier, the head of cardiac surgery, explained the operation she would be performing on Viviane’s heart. A social worker, Heidi, was there for support.

We were told to leave while the procedure was underway. “Go clear your heads. Get a bite to eat. This is going to take a while.” We expected to get a call from Dr. Poirier in the wee hours of the morning. But when the phone rang, we froze: it was only 7:30 p.m.

Then, on the other end of the line, we heard a reassuring voice: “Viviane is doing well.” They managed to fix the hole. The worst was behind us. At least, that’s what we thought.

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But five months later, Viviane developed two life-threatening aneurysms in her heart. A very rare condition.

She needed open-heart surgery immediately. I thought, as the daughter of a doctor, that I’d be ready for whatever parenthood threw at me. But when something so precious hangs in the balance, it’s like your whole world is tumbling down all around you.

Once again, the teams at Sainte-Justine were ready for her.

“Your daughter is getting the most advanced treatment possible. It’s still not very widely available,” said Dr. Poirier, who was in charge of the procedure. “This isn’t just an operation to repair her aneurysms: it will let us reconnect her lungs to her heart. At this point, Sainte-Justine is the only place in Canada with the expertise it takes to perform something so complex.”

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A combination of state-of-the-art technology, expertise and infrastructure, supported by your donations, is what I have to thank for saving my daughter’s life. Not once, but twice. You are empowering her to achieve her full potential, all the way through to adulthood.

Families in Quebec are very lucky to have access to this world-class pediatric facility. Every time we had a question, we knew we’d get a straightforward answer. For parents, it’s so reassuring to know your child is in the capable hands of this wonderful team. Everyone worked really hard to help our little girl get better. Thanks to your donations, they can give every child the best of themselves. Not just in an emergency — every step of the way.

Young patients who undergo heart surgery so early in life are at an increased risk of developmental delays. So Sainte-Justine created a neurocardiology investigation clinic (CINC), made possible through donors’ support. CINC is where potential neurodevelopmental delays can be screened and addressed to minimize the repercussions on the quality of life of these children and their families. So they can be their best selves.

Your generosity is driving medical innovations forward and you are giving the teams at Sainte-Justine the tools they need to keep Viviane — and other children like her — healthy. They are all counting on your big heart to keep theirs beating for a long time to come.

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Today, Viviane is a going concern. She climbs and jumps around. I call her my little “tank.” She’s unstoppable. Later in her teen years, she’ll have to undergo another heart operation. What kind of innovative techniques will they develop between now and then, I wonder? Only time will tell. I, for one, am looking to the future with confidence. And that’s because of Sainte-Justine. And you.

Alexandrine Garceau
Mother of Viviane and Édouard

*The remarks expressed in this article reflect the opinion solely of the author and should not be considered as representative of the CHU Sainte-Justine Foundation.

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Sainte-Justine was the first hospital in Canada to perform a pediatric heart transplant. It now offers a full spectrum of cardiac care, which will continue to expand, backed by your support. To make this happen, the CHU Sainte-Justine Foundation needs 1,000 new monthly donors to join us. Will you be one of the people who helps us write the next chapter of our story?

By joining the ranks of our faithful monthly donors, you will be helping to provide a steady source of revenue to Sainte-Justine to leverage opportunities to create a better future for our children. This option lets you spread your contribution out over the year — and you can change, suspend or cancel your donation at any time.

Give from the heart every month to support Sainte-Justine. Between now and March 31, 2022, all new monthly donations will be matched* for a year.

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*All new monthly donations received between February 10 and March 31, 2022, will be matched by an anonymous donor, up to a total of $50,000.