Difficult to imagine the death of his child, and painful to imagine that we can take pieces of it. I urge you to do it though, think about the unthinkable and be consistent with yourself. If the statistics dismay you, if Eliam’s story touches you as it moved me, at the end of this column, you will make known your willingness to donate your organs, and those of your children, in the event of brain death. .
Blinding, the sun bursts against the windows of the hospital. A wonderful fall day. A last motorcycle ride for some, a final outing in a short dress for the more daring. Eliam has only known the walls of his room for too long, he hasn’t seen anything this summer. At 15 months of existence, the youngest patient connected to a mechanical heart in the country has already undergone four cardiac operations. And this morning, when he woke up, he was vomiting blood.
HEC students laugh on the sidewalk, kebabs in hand, their heavy backpacks of a promising future. A few steps from their happiness, I find Jimmy, Eliam’s father. Red eyes, a frank smile, he welcomes me in the privacy of his hell. We walk through the sliding doors that any parent would like to avoid. High place of childhood suffering, distress, resilience and meaningless death; As my poet friend Elyjah said, a brilliant teenager who survived a double leukemia: “If you think there is holy justice, drop by Sainte-Justine!” “
The Greek tragedians could not have imagined a more dramatic Gordian knot: for one to see his child survive, another must see his own die. Sometimes the cruelest loss breeds the greatest hope.
Jimmy is a regular, he leads me through the maze of the institution, we pass the emergency room and their annex, which hosts regular overflows. There is a free room, near the intensive care unit and its 32 rooms, which are still too busy.
“My boy, he’s a warrior, you can tell he’s fighting to survive. Jimmy is a tattooed philosopher, inspired by lessons from sick children. “In the room next to us, a little 12-year-old guy wanted to take his turn, give our son the next available heart. Impossible, despite his greatness of soul, the child had to accept his own chance; he received his organ, a young heart that will continue to beat, and will allow him to age.
To be compatible, the heart to be transplanted must be small. And in good condition. Time is playing against Eliam, who has survived thanks to the mechanical heart for five months already. We have seen children reach the age of one, before exhaustion of the body or medical complications crush their last hopes.
Jimmy believes in it, anything is possible. But everything could be much better if we were consistent, because 90% of the population says they agree with organ donation, but only 60% actually consent, without opposition from the family, at the critical moment.
And while parents are willing to donate their lungs or kidneys, they often refuse to donate their children’s organs, especially the heart. The vain belief that from brain death the child can be resuscitated, or the impossibility of imagining this beloved heart beating in another chest. Heartbreaking, tragic choice, if the choice is still possible; a comatose or deceased parent cannot make his wishes known for his own children. We have to make the decision cold, rationally, as soon as possible, now, before we find ourselves at the heart of the drama.
Jimmy invites me to Eliam’s room. Sabrina, her eyes full of tears, wipes the blood from her son’s mouth. “We try to keep hope, but today it’s difficult. They welcome me, despite the distress and anxiety. May I join my voice to theirs, may echo outside the hospital their mad hope of having an organ for their child, and for all the children who will occupy Eliam’s room for years to come.
If illness and physical suffering confront us with the absurdity of existence, science and kindness can give it meaning again; sometimes death allows life. Until Quebec follows Nova Scotia’s footsteps with implied consent, the survival of Eliam and thousands of children is in our hands, at our fingertips. Sign your card. Make your decision known to your children. Inform your families, say it loud and clear, that we avoid all procrastination, that we do not betray your resolution.
I will lead by example. When I die, donate all of my viable organs. And as painful as the idea may be, I say publicly that in the event of brain death, I want my children’s organs to be removed and offered to one of the 802 people on the waiting list. That’s it for me, your turn now.