Our Story
As you know, our life changed dramatically on July 22nd, 2017, a day that should have been one of the most beautiful of our lives: our gender reveal. To top it off, our vacation was just starting. It was then, during my morphology ultrasound, that the technician told me a cardiologist from CHUL would call me for another ultrasound. I didn’t understand anything. Everything echoed in my head, and I felt lost and alone. My partner was with our other baby, who had just turned one. I immediately called my best friend because I couldn’t face this challenge alone. During our vacation, we were given an appointment for the ultrasound at CHUL on August 3rd, 2017. That’s when we learned that our little Alek would need open-heart surgery as soon as he was born. Diagnosis: Transposition of the great arteries. From that moment on, and until the end of my pregnancy, Alek clung to life. We had weekly appointments for a high-risk pregnancy, endless tests, to establish a plan of action for his birth. On December 1st, 2017, Alek was finally born. As soon as he was born, he had to undergo a procedure. They took my baby from my arms, and because I was hemorrhaging, I couldn’t follow him. Only daddy went with him. When he came back to see me in the room, he said, “He held my finger so tightly.” And right then, I knew Alek would fight until the end. The next day, the surgeon who would operate on Alek came to explain the surgery scheduled for December 3rd. I heard his words, but I couldn’t absorb everything. On December 3rd, we had to be at the hospital early in the morning to see our baby before he went to the operating room. The surgery lasted eight hours… the longest eight hours of my life. When the doctors settled Alek in the intensive care unit, the surgeon came to see us and told us everything had gone well. Seeing him in his bed, my heart as a mother exploded with emotion. On December 7th, the nurses were supposed to extubate Alek. But things didn’t go as planned. While doing the necessary exams, they discovered that they were losing the pulmonary branches due to the surgery. They had to urgently bring him back to the operating room. We learned this news at 5 p.m., and from 10 p.m. to 2 a.m., Alek was in the operating room. After this procedure, Alek remained relatively stable, and we even managed to get a bed in the neonatology unit. Things seemed to be improving. On December 20th, 2017, we were eager to leave the hospital, but Alek still needed his oxygen glasses.
We were told we might have to take them home. We were ready for anything to finally get back to our life with our two little boys. Before giving us a discharge date, the surgeon asked for an exam to understand the reason for the need for oxygen. That’s when he showed us the aneurysm compressing Alek’s lungs and part of his heart. If the aneurysm ruptured, there would be no way to save him. It was then that we learned Alek would need a third open-heart surgery the following day, at just three weeks old. That’s when I realized we would never get out of this nightmare. We decided to introduce Nathan to his little brother because the more time passed, the more we lost hope of leaving with our baby. On December 21st, 2017, Alek returned to the operating room with two heart surgeons. Of course, what he was going through was a very rare case. The surgery would last between 6 and 8 hours. Sure! We were drained, completely out of energy. But after this surgery, I will always remember the relief in the surgeon’s voice. He was proud of his intervention. It’s always hard to tell if a surgeon is proud of their work because they are such humble people. But this time, I knew. Over the following days, Alek continued to improve. It was such a relief. We spent our first Christmas and our first New Year’s Day in the hospital with Alek. It was difficult because our other baby was at home, and the grandparents took turns taking care of him. On January 5th, 2018, we learned that if Alek continued to eat well and gain weight, we could finally go home the next day. On January 6th, 2018, we were FINALLY home, together. We could finally breathe a little, relax. It was an immense relief. Since then, we’ve had medical appointments every 6 months, which then became annual check-ups. Alek lives his life normally, and he impresses me every day with his strength, courage, and smile. In May 2024, we learned that Alek would need another procedure. It won’t be open-heart surgery, but he will need a stent to widen his pulmonary artery. In fact, the transposition of the great arteries is typically corrected with a single surgery, but in Alek’s case, he was losing his pulmonary arteries due to the correction of that transposition. These arteries had stretched. On September 17th, 2024, Alek underwent this procedure, and everything went well. We know that in the future, Alek will likely need more procedures, and maybe even other open-heart surgeries. But at each stage, we remain confident and full of hope because every day is a victory.
All of this to say that throughout this journey, which will last a lifetime, the En Cœur Foundation has always been there for us, whether to support us during our hospital stays, to listen to us, and for their generosity… I could never thank them enough.