"In the first minutes following his birth, Brayden needed equipment that your donations to Opération Enfant Soleil helped fund: a pulse oximeter, a ventilation device, an oral probe, etc. The stretcher and transport incubator allowed him to be urgently transferred from Gatineau to Montreal. All thanks to your donations," Brayden's parents tell us.
A complicated birth
At Gatineau Hospital, right after his birth, Brayden is immediately taken into intensive care. His skin is blue, and his oxygen levels are low. An hour later, his mother is invited to hold him. But as soon as Brayden is taken out of the incubator, he turns blue again. He is then urgently transferred to the neonatal unit at CHU Sainte-Justine, 8 hours after birth. Mom and Dad decide to follow the ambulance to Montreal. "I had to sign a release form to leave the hospital and be with my son, even though I had just given birth!" remembers Mandy, who still hadn’t been able to hold her newborn in her arms.
A difficult diagnosis
It’s during an ultrasound at CHU Sainte-Justine that doctors discover that half of Brayden’s heart is not formed. For the parents, this is a devastating shock, a brutal plunge into the unknown and fear. Brayden is given medication to keep his heart functioning until his first heart surgery, scheduled for 7 days of age. In order for his heart to work, four open-heart surgeries will be required, scheduled as he grows.
The first heart surgery is a success. The return home goes well, but Mom remains deeply worried: "I kept checking to make sure he was breathing well and wasn’t turning blue."
The fight continues
The second surgery, at 6 months, also goes well. Brayden is almost 4 years old when he undergoes the third heart surgery. But this time, complications arise: a high fever (41°C) develops, and a pneumothorax requires the installation of a chest drain. After several days in the hospital, the family is finally able to return home, and life gradually adjusts with Brayden starting kindergarten. At age 6, Brayden becomes tired, complaining of headaches and chest pains. After a year of various medical tests, doctors discover that his heart is losing efficiency. They recommend a fourth surgery. If it fails, Brayden’s only chance of survival would be a heart transplant, a terrifying prospect for his parents. They must also explain the situation to Brayden, who finds it difficult to accept. The surgery is successful, but the wound heals poorly, and the constant fatigue and pain break Brayden's mental resilience. His mental health is affected. Brayden cracks. He's afraid. Afraid of hurting himself, afraid of being operated on again, afraid of doctors. Even changing bandages is unbearable for him. He withdraws into himself and refuses to visit his beloved animals on the farm. Any physical effort is very difficult for him (palpitations, shortness of breath). He has to be vigilant all the time and can't do what his friends do. He even has to give up karate, which is too intense for him. "Why me, mom?" he often asks.
A difficult road to recovery
Returning to school is painful, and Brayden suffers from anxiety and depression. He feels worthless and struggles with learning difficulties. Upset, Mom and Dad decide to surround themselves with professionals to help their little boy, who "no longer likes his life." "Brayden came to me one day and said, 'You should have let me die, Mom!'" Mandy shares.
Today, Brayden is slowly rebuilding himself, thanks to his family and support system. He is beginning to understand his strengths and is learning to accept himself for who he is. He now attends a school where sports activities are encouraged. The possibility of a heart transplant is still not ruled out, but Brayden is moving forward with determination. "I want to help younger kids, sick like me, not be afraid. They can get through the tough times."
– Brayden, Mandy Gabie, Patrick Parker, and Logan (5 years old)
* A pneumothorax is the presence of air between the two layers of the pleura (the thin, transparent, two-layer membrane that covers the lungs and also lines the inside of the chest wall), which leads to a partial or complete lung collapse (the lung deflates)
Brayden's care journey
