EVERY TIME WE’RE OUTSIDE WITH OUR SON AND WE ENCOUNTER A NEW SMELL, WE THINK, ‘THERE’S SOMETHING MAGALIE HASN’T EXPERIENCED YET.
Nathalie and Alexendre
Magalie, 7 months old
Magalie has a congenital defect known as esophageal atresia. Now 7 months old, she has been in the hospital since the day she was born.
The problem, which was detected in utero, is that her esophagus is not attached to her stomach. The condition occurs in one out of every 3,000 or 4,000 pregnancies. The only chance for survival is an extremely delicate thoracic operation to re‑establish this critical connection.
The entire pregnancy was monitored very closely by the high-risk pregnancy unit at Sainte-Justine. The procedure was carried out right after Magalie was born. But a series of complications then arose, one after the other. By the time she was barely 4 months old, Magalie had already undergone major surgery 5 more times, during which her stomach was manipulated, part of her intestine was cauterized, a tracheotomy was performed to address vocal cord paralysis, a stoma bag was applied and a feeding tube was inserted.
Magalie won’t be able to leave the hospital until she’s one and a half, not before she goes through another handful of operations
For her parents, their burden has been a heavy and unrelenting one: their family is separated and their normal life as a couple is a thing of the past – not to mention the impact this has had on their careers, their savings and their future. They are constantly adjusting to new situations as they arise. They rarely, if ever, get a moment’s peace.
“When the simple act of picking her up makes her writhe in pain, you learn very quickly to leave her where she is,” explains Alexendre. “If you want to take her in your arms, you have to do it on her terms. You eventually figure out a new way of making that contact.”
And then there’s Magalie’s big brother, 2-year-old Marc-Antoine, who is a typical toddler, with a typical toddler’s needs. He wants to play. He falls down and gets hurt. He cries. He carries around any number of viruses. Alexendre and Nathalie constantly feel torn: to be with one of their children, they have to leave the other one behind. And between the mortgage, taxes, car payments, daycare fees, groceries and getting back and forth to the hospital, they are overwhelmed.
“One of the biggest lessons we’ve had to learn is how to accept offers of help,” Nathalie admits. “People can be incredibly kind. But how can I ever repay them? I think about that every day.”
Despite the uncertainty ahead, both Nathalie and Alexendre find hope in their daughter’s sparkling eyes. Magalie recently figured out that there is a whole other world outside the window of her room and that life has much more to offer than the comings and goings of a hospital corridor.
“Light, sun… isn’t the sun beautiful, Magalie?” Get better and get stronger so you can go enjoy it with the people who love you.
A BETTER TOMOROW BECAUSE
“Because you give to the CHU Sainte-Justine Foundation, we are one step away from guaranteeing a healthy future for young patients like Magalie. Your generosity is essential to research teams like mine so we can ensure children have timely access to the best possible treatments.”
- Dr. Christophe Faure, pediatric gastroenterologist and Magalie’s doctor