Brayden Odell’s family launch foundation aimed at improving outcome for others affected by same brain disease.
Twinkle lights spiral around the trunks of tall spruce trees outside the Dwyer-Odell home in Arundel, a village in the Laurentians, north of Montreal. A wind chime hanging from a branch tinkles. Dozens of wooden hearts, each holding a message for Brayden Odell and his family, decorate the boughs.
“I come here when the wind’s blowing, and the chimes are going, and I just feel his presence is here,” Brayden’s mother, Jennifer Dwyer, says with a sad smile.
Brayden, 11, died on Jan. 27, 2021, following a massive brain bleed caused by a disease no one knew he had.
His death turned his family’s life upside down, but it also forged an unexpected bond with the neurosurgeon who performed emergency surgery on him. That connection has led to the creation of a fund to raise awareness of congenital malformations like Brayden’s, in the hope of sparing other families the Dwyer-Odells’ pain.
‘Mommy, am I going to be OK?’
Their odyssey began late in the day of Jan. 22, 2021. Brayden was playing video games when he stopped and complained about a bad headache.
That was unusual, his mother said: he rarely complained about anything. As she turned towards the cupboard to look for Tylenol, her son Shane said, “Mom, look at him.”
Brayden was sweating profusely. When she touched him, he was “hot like fire.”
He looked at her and asked, “Mommy, am I going to be OK?”
He asked his father the same question when Kevin Odell came running after he heard his wife cry out, “Call 911.”
Even as his parents tried to reassure him, they knew something was terribly wrong. Within minutes Brayden was no longer responsive.
“He couldn’t speak. He couldn’t do nothing. He was just drooling,” his mother recalled.
Tangle of blood vessels
An ambulance rushed Brayden first to Saint-Jérome hospital, an hour away, then on to Montreal, to the Centre 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 those vessels are prone to rupture, much like in an aneurysm.
AVMs are rare, affecting no more than one in 1,000 children, said Dr. Alexander Weil, the pediatric neurosurgeon who treated Brayden. However, they are the most common cause of spontaneous brain 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 per cent of cases in children are fatal, while others result in lifelong cognitive or physical impairment.
As Brayden underwent a 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 the boy’s life was in danger.
Weil needed to operate on the boy immediately. He walked out of the scan to break the news to Brayden’s parents.
Weil said that collision of two worlds — his, as a physician and that of his patients and their families — is one of the most intense parts of his job.
Recalling the moment that night when he met Kevin Odell and Jennifer Dwyer brings him to tears.
“Our first discussion together as human beings is, ‘Your son has a life-threatening condition.'”
Weil later learned two people in his own circle knew the Dwyer-Odell family, but he said it was that first encounter before going into the operating room that sealed a bond he expects will connect him and the family from now on.
“When I entered into their lives, and entered quite literally into his brain to take out the blood clot that was threatening his life, they entered into my life and into my heart,” he said.
The surgery lasted several hours, and Weil successfully relieved the pressure from the bleed. 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 to beat normally again, but couldn’t.
“We are at the end of our ropes here,” Dwyer said doctors told her. “There is nothing we can do for your son.”
Brayden’s three older siblings joined their parents at the boy’s bedside to say their goodbyes. It was well after midnight when they left for the long drive home 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 collapse in a heap on the couch, talking into the wee hours. She turned down invitations from friends to get out of the house.
Like her parents and siblings, she found herself reaching out to Weil, Brayden’s surgeon.
“I have messaged him, and I’ve just been like, ‘Why?'” said Brianna. “He’s just very comforting.
Brayden’s death deeply impacted Weil, too, and he said the connection he made with the family helped him deal with his own grief.
“Through helping heal this family after he was out of my care, I think I have developed a bond and brought the emotions to the forefront,” said Weil. “In a way, I think that’s helped me help them — but they have helped me also.”
Weil and CHU Sainte-Justine’s 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,” said Weil, “especially Jen, Brayden’s mom, who is a force of love and light, who is determined through her own hardships of her own son and their own situation to help others.”
Dwyer says the Team Brayden fund is a way to make sure her son’s memory and legacy lives on.
“AVM is such a rare condition,” she said. “Why can’t we figure out something that can help a family not to go through what we are going through: help save a child.”
The family will be hosting 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 the research is needed to help understand the disease, and potentially to develop a blood test to detect AVMs or medication to better treat them.
A physical reminder
Weil spoke at the celebration of life for Brayden.
After the ceremony, Dwyer gave him a present he said means more to him than any honorary title or distinction he may receive for his work: a glass heart embedded with some of Brayden’s ashes. Weil carries it in the pocket of his scrubs when he’s in the operating room, and it sits on his desk when he does research.
He said witnessing the family’s pain in losing a son and a brother has made him truly understand what it means when a parent thanks him for saving their child.
“[Brayden] is a constant reminder to me about the impact of what I do,” he said.
“So I carry [him with me], and the end result is, every day I will do the best of my ability to save every kid, till my last day on earth.”
ABOUT THE AUTHOR
Based in Quebec City, Marika travels across the province telling the stories of people who live and work in la belle province for CBC Radio One and CBCnews.ca.
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