“His stomach is a little on the small side.” Those are the first words I remember hearing from my family doctor during a routine ultrasound at the end of my second trimester. “I’ll have to transfer your file to Sainte-Justine.” And that’s where it all started.
Our third pregnancy was a surprise. We had welcomed our second child only six months earlier, and our oldest had just turned four. And I was buried in my law books, getting ready for the bar exam. We already expected the path ahead of us to be a little rocky.
“We think it may be esophageal atresia.” Another set of words I’ll remember for the rest of my life. I couldn’t catch my breath. My heart was racing. That moment also stands out clearly in my mind.
I learned a little while later that there are several different anomalies that can point to esophageal atresia. “There are a few things about his heart we’ll be keeping an eye on. Nothing to worry too much about, but we’ll have to investigate further after he’s born. Say, when he’s about a month old,” said the cardiologist. His tone was as caring and compassionate as it was professional and reassuring.
I remember the many appointments, the stress that snuck its way into our lives and stayed there. Our determination to keep the baby’s gender a surprise despite it all. My over-swollen belly, where an excess of amniotic fluid indicated a probable esophageal block.
I remember how scared I was. Scared of this diagnosis I knew nothing about. Scared of what would happen before and after. Scared that something even more serious might be lurking in the shadows.
I’ll never forget our appointment with the geneticist, 35 weeks along. We scoured every branch of our family tree for hints into our forebears’ medical histories.
Then there was the first time we met the wonderful team who would be there for Louis-Georges’s delivery and much of the first year of his life. Nurses, the surgical team affiliated with the esophageal atresia outpatient clinic, led by Dr. Aspiro, cardiologists, pulmonologists, the nutritionist (Claire), the gastroenterologist (Dr. Faure), the ENT and more.
My midsection had ballooned so much by that point that I was the equivalent of 43 weeks’ pregnant. My uterus was the same size as someone carrying triplets – much too big for one little bundle.
“We have to drain the amniotic fluid to avoid placental abruption. But there’s a good risk that it could send the wrong message and trigger premature labour,” I was told during one of my appointments.
The first drainage, followed by the second. I had lost control of my body, but I still had my wits about me. And that’s all down to our small but mighty team, and how well they took care of us. When the world around you is filled with uncertainty, every little act of kindness means a lot.
We had a date. But life had other plans in mind. My water broke in my 37th week, but there was no sign of contractions. I remember the sense of utter panic. The text-messages sent to my mother as we sped to Sainte-Justine. “I’m a total basket case.”
We got to the hospital.
“I’d really like to hear the baby’s heartbeat,” I said to the nurse, who instantly understood my concern. As I did hers, while we both listened intently.
“The heart is beating very slowly. I’ll call my team. I’ll warn you now: there’s going to be a lot of people in here,” And, just like that, everything came to a grinding halt for me. Time stood still. Heart rate: 75 bpm. Cardiac distress. Placental abruption. Hemorrhage. Emergency C-section. The words kept coming at me, one after another, as I was wheeled into the operating room.
Was I still breathing? I felt frozen. I clutched the nurse’s hand and wouldn’t let go. My heart was beating in my ears. Please, save my baby.
Louis-Georges came into the world by emergency delivery on February 10, 2018, surrounded by an amazing team. They told me later luck was on his side. That a few minutes could’ve made all the difference. I owe my son’s life to these incredible people. Because any stroke of luck that isn’t backed by science is like a drop in the ocean when it comes to saving a child’s life. Without a diagnosis, the right equipment and research, we didn’t stand a chance. And lots of other mothers aren’t so fortunate.
Louis-Georges was operated on by pediatric surgeon Dr. Nelson Piché a few hours after his birth and then rushed to the NICU. “The procedure went extremely well. Everybody on the team deserves a slice a pizza,” Dr. Piché announced with a glint in his eye. There’s simply no better reward after a hard day’s work!
We spent close to 10 days at Sainte-Justine, as we struggled to balance our time between home and the hospital, and keep a close eye on our son’s development. We learned about day-to-day life with esophageal atresia and what to watch for. We met some fantastic nurses, other parents who had seen their fair share of harrowing moments, and an outstanding group of surgeons and doctors.
One nurse urged me to take pictures of my son, even though he was connected to a sea of tubes and wires. She later shared with me that her own son received the same diagnosis over 20 years before and she regretted not capturing these moments. She had felt too shy, too out of place.
Living in the present and making the most of every moment. Louis-Georges’s birth taught me what it is to be resilient, to have inner strength and to really fight to survive.
I know I owe my son’s life to Sainte-Justine. I’ve expressed my eternal gratitude in many ways, starting with a donation to the Foundation. That’s where I saw that their love of children also extends to the care and attention they give to their donors. I’m thinking back to a very touching call I got during the Foundation’s Thankathon. And every day, Louis-Georges is a living reminder of the tangible progress that is being made in medical research, all because of people’s donations.
That’s when I decided to get involved and give back concretely to the Foundation. One thing led to another and, at the nudging of Chloé Teasdale, co-chair of the Sainte-Justine Circle, I became the co-president of the RBC Race for the Kids, a new event for the Foundation that unfortunately won’t be taking place because of the COVID-19 crisis.
As this commitment shows, pediatric research is very important to me. It’s a personal investment that is a meaningful way of helping others. It honours this beautiful institution of ours and reminds me that Louis-Georges’s life is the best gift I have ever received – and one I wouldn’t have if it weren’t for Sainte-Justine.
*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.
