Twinkling lights circle around the trunks of tall spruce trees outside the Dwyer-Odell house in Arundel, a village in the Laurentians, north of Montreal. A wind chime hanging from a branch tinkles. Dozens of wooden hearts, each containing a message for Brayden Odell and his family, decorate the branches.
“I come here when the wind is blowing and the chimes are ringing, and I just feel his presence is there,” Brayden’s mother, Jennifer Dwyer, said with a sad smile.
Brayden, 11, died on January 27, 2021, from a massive brain hemorrhage caused by an illness that no one knew he had.
His death turned his family’s lives upside down, but it also forged an unexpected bond with the neurosurgeon who performed emergency surgery on him. This connection led to the creation of a birth defects awareness fund like Brayden’s, in hopes of sparing other families the pain of Dwyer-Odells.
“Mom, are you okay? »
Their odyssey began late in the day on January 22, 2021. Brayden was playing video games when he stopped and complained of a bad headache.
It was unusual, his mother said: he rarely complained about anything. As she turned to the closet to get Tylenol, her son Shane said, “Mom, look at him.”
Brayden was sweating profusely. When she touched him, he was “hot as fire”.
He looked at her and asked, “Mom, are you okay?”
He asked his dad the same question when Kevin Odell came running after hearing his wife yell, “Call 911.”
Even as his parents tried to reassure him, they knew something was seriously wrong. Within minutes, Brayden was unresponsive.
“He couldn’t talk. He couldn’t do anything. He was just drooling,” his mother recalled.
Entanglement of blood vessels
An ambulance transported Brayden first to Saint-Jérôme Hospital, an hour away, then to Montreal, to the Center hospitalier universitaire Sainte-Justine, the largest children’s hospital in Canada.
A brain scan revealed Brayden had an arteriovenous malformation, or AVM – a congenital condition in which a tangle of blood vessels forms in the brain. The walls of these vessels are susceptible to rupture, much like in an aneurysm.
AVMs are rare and affect no more than 1 in 1,000 children, said Dr. Alexander Weil, the pediatric neurosurgeon who treated Brayden. However, they are the most common cause of spontaneous cerebral hemorrhage in children.
The only way to diagnose an AVM is with a brain scan, and even if the tangle is found, only one in five can be surgically removed, Weil said.
Some people never find out they have an AVM or experience symptoms. But 20% of cases in children are fatal, while others result in lifelong cognitive or physical impairment.
As Brayden underwent a CT scan at Sainte-Justine Hospital, Weil watched a computer screen in real time as images of his patient’s brain appeared on the monitor. They showed that the boy’s life was in danger.
Weil had to operate on the boy immediately. He came out of the scanner to break the news to Brayden’s parents.
Weil said the collision of two worlds — his own, as a doctor, and that of his patients and their families — is one of the most intense parts of his job.
Reminiscing about that night he met Kevin Odell and Jennifer Dwyer makes him cry.
“Our first discussion together as human beings is, ‘Your son has a life-threatening illness.'”
Weil later learned that two people in his own circle knew the Dwyer-Odell family, but he said it was that first meeting before entering the operating room that sealed a bond he believes will now connect him to the family.
“When I walked into their life, and I literally walked into his brain to remove the blood clot that was threatening his life, they came into my life and into my heart,” he said.
The operation took several hours and Weil was able to relieve the pressure of the bleeding. However, four days later – while Brayden was still in intensive care in an induced coma – he went into cardiac arrest. The medical team tried to get the boy’s heart beating normally again, but failed.
“We’re at the end of our ropes here,” Dwyer told doctors. “We can’t do anything for your son.
Brayden’s three older siblings joined their parents at the boy’s bedside to bid farewell. It was well past midnight when they set off for the long drive back to the Laurentians.
“The hardest part was closing that door and not bringing our boy with us,” Dwyer said.
At home, the family tried to make sense of their loss. Brianna, the eldest, says she and her brothers would slump in a heap on the sofa, talking until the early hours. She refused invitations from friends to leave the house.
Like her parents and siblings, she found herself reaching out to Weil, Brayden’s surgeon.
“I texted him, and I was just like, ‘Why?'” Brianna said. “He’s just very comforting.
Brayden’s death also had a profound impact on Weil, and he said the bond he made with the family helped him deal with his own grief.
“In helping to heal this family after he was no longer in my care, I think I developed a bond and brought the emotions to the fore,” Weil said. “In a way, I think it helped me to help them, but they also helped me.”
Weil and the CHU Sainte-Justine Foundation worked with the Dwyer-Odell family to create a fund in Brayden’s name.
“If anything, it’s a testament to the kind of people they are,” Weil said, “especially Jen, Brayden’s mother, who is a force of love and light, who is determined by his own son’s own difficulties and their own situation help others.”
Dwyer says the Brayden Team Fund is a way to ensure that his son’s memory and legacy lives on.
“AVM is such a rare condition,” she said. “Why can’t we find something that can help a family not go through what we’re going through: help save a child.”
The family will have a fundraiser in August when they hold a golf tournament on the course in front of their Arundel home.
They hope the money can be used to raise awareness about AVMs and fund research to improve outcomes.
Weil said research is needed to help understand the disease and potentially to develop a blood test to detect AVMs or drugs to better treat them.
A physical reminder
Weil spoke at the celebration of Brayden’s life.
After the ceremony, Dwyer presented him with a gift that he says means more to him than any honorary title or honor he might receive for his work: a heart of glass encrusted with Brayden’s ashes. Weil carries it in his lab pocket when he’s in the operating room, and it sits on his desk when he’s doing research.
He said witnessing the family pain of losing a son and a brother really made him realize what it means when a parent thanks him for saving their child.
“[Brayden] constantly reminds me of the impact of what I do,” he said.
“So I carry [him with me]and the end result is that every day I will do my best to save every child, until my last day on earth.”