176 transfusions later - A father tells his story

By Louis,

Gabriel Bellefleur, a patient at the Children’s, recently received his 176th blood transfusion; his father looks back on the family’s journey at the Children’s

It was November 2003. My wife, Pascale, had been bedridden at home for several weeks because of complications with her pregnancy. But this time she’d been admitted to the hospital because things weren’t going according to plan. “Don’t worry,” I told her. “Once we’re home, everything will be fine and it’ll all be over.”

The night she gave birth, I rushed over the hospital. “Congratulations,” the doctor told me, “you have a healthy baby boy!” HEALTHY—that’s what the doctor had clearly said. Everything was fine until they realized the baby wasn’t breathing on his own because his little lungs weren’t completely formed yet. A nurse had to help him breathe for two hours to keep him alive until an ambulance arrived from Montreal.

When they told us they were taking him to the Montreal Children’s Hospital. “Don’t worry,” I told her. “Once we’re home, everything will be fine and it’ll all be over.”

In less than 45 minutes, we were there. As I walked into the ICU on the 9th floor, I had yet to realize that the course of our lives had just been completely altered by disease. Gabriel would stay in Intensive Care for a month.

During the first four weeks of our son’s life, the staff told us he’d need not one, but two blood transfusions. We were totally shocked! I can still picture that tiny baby, wires and tubes sticking out everywhere, with blood being transfused into his head. I felt so helpless. But, on the phone with a frantic Pascale, I tried to reassure her. I couldn’t tell her everything that was going on because I knew it would only worry her more. “Don’t worry,” I told her. “Once we’re home, everything will be fine and it’ll all be over.”

During our first few days at the hospital, Social Services were a big help. They found me a little room across the street from the hospital where I could get some sleep.

We were introduced to a doctor who would soon become an amazing ally: the kind and incredibly compassionate Dr. Aurore Côté, who understood that we’d been in the hospital for a long time and did everything in her power to get us home for the Holidays. She gave us a saturometer and arranged to have oxygen delivered.

Even though we’d known it from the start, that was when we truly realized just how much everyone at the Children’s cares: The families come first. It was Christmas Eve when we finally made it home and really started believing we might be able to put everything behind us. But, Gabriel’s saga at the Children’s was far from over!

After a short stay at the hospital in Saint-Jérôme in January, Gabriel was transferred back to Montreal, where he had his third transfusion in a month. We were referred to the Hematology-Oncology department, but after a few weeks of treatments, transfusions, and hospital stays, we could tell that things weren’t going well.

Unfortunately, we got the news that no parents ever want to hear and that no doctor probably ever wants to deliver. Dr. Abish, the other amazing doctor in this whole story, spoke the two words that will forever be engraved on our minds: Diamond-Blackfan.

Children with Diamond-Blackfan syndrome, a congenital disease, suffer from chronic anemia because their bone marrow is unable to produce enough red blood cells. They need transfusions for the rest of their lives or they’ll die! That was when we truly understood that our life would never be the same and that the hospital had become our saving grace.

The transfusions were very painful for Gabriel. His tiny veins were having a hard time standing up to all the IVs. That’s when they recommended surgically installing a venous catheter to make the transfusions easier for him. We were told that it was a common procedure and that there wouldn’t be any major complications.

But, Gabriel isn’t like other people. A major complication did happen: He developed a blood clot and needed emergency surgery. To improve his condition, he needed injections every twelve hours to try to dissolve the clot that had formed. Given the distance between home and Montreal, Dr. Abish showed us how to give him the shots ourselves so we wouldn’t have to make the trip. Another considerate decision that made our lives so much easier!

Obviously, it’s impossible for me to recap the past 12 years in just a text, or to convey all of Gabriel’s pain and the effects it’s had on our family. His disease has also taken a toll on his big sister, Juliette, who’s been so strong throughout this whole ordeal. She’s had to watch her brother fight for his life and be taken away in an ambulance in the middle of the night… Most of all, though, she had to come to terms with the fact that he was sick when she was only 3 years old.

It’s also very hard to describe the great work done by the staff at the Children’s. I’m talking about the doctors, nurses, attendants, secretaries, educators, and even a security guard who came to visit Gabriel whenever he was in the hospital. We always felt at home at the Children’s and we still do, to this day.

Up until now, Gabriel has been treated by Hematology, Respiratory Medicine, Endocrinology, and Cardiology, and he’s had five operations and hundreds of hospital trips, not to mention the many times he’s had to be admitted for several days. He has to have weekly blood tests and receives blood transfusions regularly.

He had his 176th transfusion. In life, it’s important to think good thoughts and to give back to the people who’ve helped you. The Children’s did more than just help us—they saved our son’s life. And for that, we’re eternally grateful to them.

Many people have a home in Montreal and a cottage in the Laurentians, but for us, it’s the reverse. We live up north and have a cottage in Montreal. We’re happy here and we feel blessed to be part of this big family. Yes, we’ve had hard times. We’ve been through it all: anger, distress, heartbreak, and hopelessness, but we’ve also known joy, laughter, and happiness.

And that’s why I decided to give back to this incredible hospital. For the past 14 years, I’ve organized a golf tournament in Sainte-Adèle to benefit the Children’s. The modest tournament that was only supposed to be a one-time event has turned into a major happening in our community, helping to raise almost $220,000. We used that money to build a specialized room in the Hematology-Oncology department that will be known as the “Gabriel Bellefleur Family” room.

Unfortunately, I can no longer say to Pascale, “Don’t worry, once we’re home, everything will be fine and it’ll all be over.” But, I can tell you that, even though things aren’t fine and it’s not over, we have a future to look forward to thanks to our amazing family at the Children’s.

Thank you for saving our son’s life!

The Bellefleur family

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