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Warning: This story contains images that may disturb some readers.
Twinkle lights revolve around the trunks of tall spruce trees outside the Dwyer-Odel home in Arundel, a Laurentians village north of Montreal. The wind blows on a branch. Dozens of wooden hearts, each with a message for Brighton Odell and his family, adorn the horns.
“I’m here when the wind blows, and when the wind blows, I feel his presence,” Braden’s mother Jennifer Dwyer says with a sad smile.
Brighton, 11, Jan. He died on 27, 2021 following a brain hemorrhage caused by an unknown disease he had.
His death turned his family’s life upside down, but it created an unexpected bond with the neurosurgeon who performed the emergency surgery on him. That contact led to the creation of a fund to raise awareness of congenital defects such as Braden, in the hope that other families would save Dwyer-Odells’ pain.
‘Mom, am I going to be okay?’
Their Odyssey started late on January 22, 2021. While Bradon was playing video games, he complained of a headache.
It was unusual, his mother said: he rarely complained about anything. When she turned to the closet to look for Tylenol, her son Shane said, “Mom, look at him.”
Sweating for Brighton. When she touched him, he was “hot as fire.”
He looked at her and said, “Mom am I okay?” He asked.
He asked his father the same question when Kevin Odell ran over to hear his wife scream “Call 911”.
Even when his parents try to convince him, they know something is terribly wrong. Within minutes Braden was no longer responding.
“He could not speak. He could not do anything. He was drooling,” his mother recalled.
Problem with blood vessels
An ambulance first took Braden to Saint-Jérome Hospital, about an hour away, and then to Montreal, to Sainte-Justine, the central hospice at Canada’s largest pediatric hospital.
A brain scan revealed that Braden had a congenital condition that causes an arterial defect or AVM – a problem with the blood vessels in the brain. The walls of those vessels are likely to crumble like an aneurysm.
AVMs are rare and do not affect more than one in 1,000 children, said Dr. Alexander Weil, a pediatric neurosurgeon who treated Braden. However, they are the most common cause of spontaneous cerebral hemorrhage in children.
Weil said a brain scan is the only way to diagnose AVM, but even if the problem is found, only one in five can be surgically removed.
Some people do not even realize they have AVM or experience symptoms. But 20 percent of cases in children are dangerous, while others cause cognitive or physical impairment throughout life.
Worlds collide
When Braden scanned Sainte-Justine Hospital, Weil looked at the computer screen in real time as images of his patient’s brain appeared on the monitor. The boy’s life was in danger.
Weil said the boy needed immediate surgery. He left by scan to deliver the message to Braden’s parents.
Weil said the conflict between the two worlds – a doctor and his patients and their families – is one of the most serious parts of his work.
Remembering the moment he met Kevin Odell and Jennifer Dwyer that night brings tears to his eyes.
“Our first discussion as human beings was, ‘Your son is in a life-threatening condition.'”
Weil later knew the Dwyer-Odell family of two people in his own circle, but he expects that the first meeting that took place before he went into the operating room will no longer connect him and his family.
“When I entered their lives and entered his brain to pick up a blood clot that was threatening his life, they entered my life and my heart,” he said.
The surgery lasted several hours and successfully removed the pressure from the hemorrhage. However, four days later – while Braden was in intensive care in an induced coma – he went into cardiac arrest. The medical team tried to beat the boy’s heart back to normal, but could not.
“We’re here at the end of our ropes,” the doctors told him, Dwyer said. “There is nothing we can do for your son.”
Braden’s three older siblings said goodbye to their parents in the boy’s bed. It was well past midnight when they left for the Long Drive to Laurence House.
“The hard part was closing that door and not bringing our boy with us,” Dwyer said.
Special bond
At home, the family tried to realize their loss. Elder Briana says she and her brothers will be piled high on the sofa. She turned down a call from friends to leave the house.
Like her parents and siblings, she saw Braden’s surgeon approach Weil.
“I texted him and I said ‘why?’ “She is OK.
Braden’s death also deeply affected the sun, and he said the contact he made with his family helped him deal with his own grief.
“By helping to heal this family after he left my care, I have developed a bond and brought emotions to the forefront,” Weil said. “In a way, I think it helped me to help them – but they also helped me.”
Weil and the CH Sainte-Justine Foundation, in conjunction with the Dwyer-Odell family, created a fund in Braden’s name.
“If anything, it’s a testament to what they are like,” Weil said, “especially Jen, Braden’s mother, the power of love and light.
Team Bryton says fundraising is a way to ensure his son’s memory and legacy live on.
“AVM is a very rare condition,” he said. “Why can’t we find something that will help a family stay afloat: help save a child.”
In August the family will hold a fundraising event when they hold a golf match in front of Arundel’s house.
They believe the money could be used to raise awareness about AVMs and to fund research to improve outcomes.
Weil said the research is needed to understand the disease, develop blood tests to detect AVMs, or develop drugs to better treat them.
A physical reminder
Weil spoke to Brighton at the Lifetime Celebration.
After the ceremony, Dwyer gave him a gift that said it meant more to him than any honorary degree or distinction he could receive for his work: some gray-embroidered glass heart of Braden. Weil carries it in his pocket of scrubs while he is in the operating room, and it sits at his desk while he researches.
He said he saw the pain of a family that lost a son and a brother, and that it really made sense to him when a parent thanked him for saving their child.
“[Brayden] It’s a constant reminder of the impact of what I do. “
“So I carry [him with me]And the end result is that every day I will do everything I can to save every child on earth until my last day. “
