For Georges’s third birthday in early January, we turned the house into a pirate ship. We all got dressed up and celebrated this important milestone as a family. Georges often says he’s a “big brother,” a phrase he gets mixed up with “big boy.” Although I do correct him, I know he is not entirely wrong: Georges is the big brother of his twin, Marius, who will stay five months old forever.
Three years ago, in January 2018, when I came home with two “healthy” newborns, there was no sign whatsoever that Marius’s days were numbered. Both boys appeared to be the picture of health, and life was good. Mind you, Marius was a bit slow to put on weight. And nursing was a challenge: I had two mouths to feed and I wasn’t producing enough milk, so I supplemented with formula. Marius tended to spit up, although in small amounts, at least at first. We were told that infant reflux was a hindrance to a good night’s sleep, but nothing to worry about. It was just that his digestive system was immature, given that he was born a little early. We worked closely with our family doctor to try every imaginable kind of milk and lots of different strategies to keep his reflux at bay. But with each passing week, the difference in the boys’ weight grew. His vomiting became more and more aggressive, and more and more alarming. A series of tests at Sainte-Justine ruled out pyloric stenosis, but they did confirm his pylorus, a muscular valve between the stomach and the small intestine, was narrower than average, making it the likely culprit. All we had to do was wait for his digestive tract to develop. The news was supposed to be reassuring, but it instilled a feeling of dread in me that never really went away.
On May 4, I went back to the Sainte-Justine emergency room. I needed answers. Marius wasn’t spitting up any more than he had been for the past few days, but my mother’s intuition was telling me something was wrong. I was once again given a textbook explanation of what reflux is, but I stood my ground. I asked for another ultrasound. Deep down, I felt that, even though Marius’s condition didn’t meet surgical criteria, the clinical findings warranted more immediate action. The ER doctor took my concerns seriously.
That’s when everything went off the rails, out of the blue. After the ultrasound results came in, showing that Marius’s heart was surrounded by fluid, we were sent straight to cardiology. The boys’ father arrived while they were doing more tests, just in time to be told that life as we knew it was over. It was in Dr. Bigras’s office that we were given the bad news: Marius had a severe case of hypertrophic cardiomyopathy. His heart muscle was so thick it was blocking the flow of blood. We were cautioned to expect the worst. “What’s the best-case scenario?” Dr. Bigras’s apologetic look answered before he did: “A heart transplant.” Our hopes grew dimmer as we heard how rare it was to find a donor heart this small, how much weight Marius would have to gain before surgery was even thinkable, how slim his actual chances were given the timeframe. Not only that but, in the extraordinary event everything else worked out, a heart transplant would come with its fair share of challenges, which we would have to get into later. The first thing was to admit Marius to intensive care right away. His condition was critical. The fluid around his heart had to be drained immediately before failure became imminent.
At that very moment, figuring how much pain and suffering awaited my son, I actually wanted him to be snatched away from me and spared the ordeal. I felt like I was outside of my own body looking in. I have no recollection of the next few hours. The shock was overwhelming. I didn’t even recognize the critically ill baby hooked up to all the machines, with an oxygen mask covering his face, as my own. He couldn’t be: only a few hours earlier, all he had was a simple case of reflux.
The next six weeks were the darkest and cruellest experience anyone could ever go through. We went into the hospital as beaming new parents of twin boys, only to become round-the-clock caregivers for a tiny life hanging by a thread, whose condition grew steadily worse as the days went on and the hope for a new heart waned. We were utterly powerless,trying to believe in miracles. In the meantime, we tried to seize every moment with our beautiful boy. And to make matters worse, every fleeting minute with him kept us away from his brother…
The doctors performed two procedures and one operation on Marius to help improve his condition while we waited for him to become candidate for a heart transplant. Geneticists, critical care specialists, cardiologists, surgeons and other eminent experts all weighed in on his case, all caught up in this race against time to find a happy ending for Marius’s predicament.
As low as our spirits were, we always knew the hands of the caring staff members were there to hold onto for support. We anxiously awaited each of the doctors’ rounds, sometimes with fear and trepidation gnawing away at the pit of our stomach, sometimes with a renewed sense of hope. The names and faces of those who embody these feelings are etched in our memories forever: Dr. Raboisson, Dr. Delrue, Dr. Andelfinger, Dr. Harrington, Dr. Miró, Dr. Dahdah, Dr. Poirier, pharmacist Christopher Marquis and so many others with whom we shared some of the most harrowing moments of our life. This passionate, generous and fearless team who left no stone left unturned, going so far as to suggest experimental treatments developed at Sainte-Justine to give Marius a fighting chance. I remember all the nurses who cared for my son and for us. Who worked quietly behind the scenes or directly on the front line, who reassured us or told us the truth when we needed to hear it. Thinking back on all those gloomy days at the hospital, there are sparks of light that spring to mind: Marius on his activity mat, the critical care resident who broke down in tears with us, the nurse who let the twins have their time together in the intensive care department, the cardiologist whose deadpan sense of humour managed to exact a smile or two out of us when we thought we’d never smile again, the warm blanket a nurse brought to me the night after I finally cried myself to sleep, and the gentle, loving way everyone talked to Marius the entire time he was in their care.
Our darling son passed away on June 10, 2018, cradled between his two parents as we sang softly to him a song about a boat undertaking his first long journey on the Meditarranean sea. A significant departure for a boy named after Marcel Pagnol’s sailor character in his Marseille Trilogy. As agonizing as it was to watch him slip away, he was surrounded by love to the very end. And knowing that absolutely everything had been done to save him — that we explored every avenue and had the support of the best people in the field — eases our pain even today.
Eager for beauty and cheerfulness, we wanted to create one last happy memory of our son’s life and to celebrate him like we were never able to while he was alive. We hosted a huge party in his honour at Lafontaine Park, with balloons, clowns, cotton candy and songs at the piano… a vibrant celebration to match his vibrant spirit, buoyed by an outpouring of love of generosity from so many.
Today, nearly three years later, our pain has subsided, but our love lives on. It helps that Georges is a wonderful, healthy little boy who reminds us of all that life has to offer. As we all donned our pirate costumes for his birthday party, I put my wishes for Marius in a bottle and cast it out to the heavens, hoping it would reach our little sailor as he makes his way across the waves of eternity.
*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.