Braden Gendron, 11, will be moving to Toronto temporarily with his family, who just found out he has been accepted to be put on the list for a double-lung transplant for his pulmonary hypertension. Photo: KâtÈ LeBlanc/Telegraph-Journal
By Erin Dwyer for the Telegraph-Journal - Saint John, New BrunswickHAMPTON - Eleven-year-old Braden Gendron can't wait to play hockey.
A first-time player, he'll need new skates, a new helmet and a stick.
The Hampton boy will also need a new set of lungs.
Braden suffers from pulmonary hypertension, which occurs when tiny arteries and capillaries in the lungs progressively become narrowed, blocked or destroyed, making it harder for blood to flow through the lungs.
This raises the pressure within the pulmonary arteries, making it harder for the heart to pump blood through the lungs. The lack of oxygen makes people with the disease tired, dizzy and short of breath. There is no known cure for this life-threatening and rare disease, which affects only one or two people in a million, except a double-lung transplant.
Last week, Braden and his parents, Jennifer and Dan Gendron, an RCMP officer, found out their son had been accepted into the Toronto General Hospital's Multi Organ Transplant Program.
"He's actually really excited," said his mother, who owns Lifestyles Health & Fitness Studio in Hampton. "He's really ready and looking forward to it. For me, I know he's ready and that takes a little weight off of us.
"I just think he's gotten to the point where he's feeling so miserable all the time and he's really tired of feeling sick. He's on oxygen all the time now, which bothers him a lot. He doesn't really like to go anywhere and be seen. And he doesn't have much energy to do anything."
Braden was only four when he first began to develop symptoms of pulmonary hypertension. At first, doctors attributed the symptoms to asthma until an echocardiogram taken just before he entered kindergarten revealed his heart was enlarged and led to the diagnosis. At the time, the family was given little information and little hope. They were told he had only two to three years to live.
Since then, Braden has been on medications to slow down the progression of the disease. But in recent months, his mother noticed his health was deteriorating and, in May, Braden developed pneumonia.
"Because he was already struggling a little bit, that knocked the last little bit of fight out of him."
The boy had to go on oxygen 24 hours a day.
Earlier this month, Braden went to the Hospital for Sick Kids in Toronto for an assessment. Doctors found a big change in the condition of his lungs and in his heart function. After many tests and consultation with the family and Braden, doctors recommended the 11-year-old be put on a transplant list.
"They don't want to transplant too soon, but yet it's a very fine line between too soon and waiting too long so that things deteriorate to the point where they think it's too risky to transplant," his mother said.
"People have said, 'Oh this is great. He finally qualifies for a transplant.' Well, it's not a good thing. It's a good thing he's still able to be transplanted. But it's not a good thing where we've got him to the point that he needs to be transplanted."
The family was hoping Braden would be older and bigger before he required a transplant.
"People think that once he gets his lung transplant, he'll be cured," Gendron said. "He'll be cured of his pulmonary hypertension, but there a lot of things that can go wrong with a lung transplant. It's not a quick fix and he'll be on medications for the rest of his life for rejection. There are a lot of risks and complications along the road."
Braden won't officially be placed on the transplant list until he lives close to the Toronto hospital. Next month, he, his parents and his nine-year-old twin brothers, Rylan and Jarrett, are making the move for what could be a long wait for a donor. Doctors have told them a lung donor his age could take six months to a year and therapy after the surgery could be several more months.
But if the wait is too long, Braden could also require a new heart.
"As long as he gets a transplant fairly soon, they are looking at just lungs," Gendron said. "But if his condition deteriorates any further, then the possibility is there that he may need a heart-lung transplant."
That's something that's never been done on a child at the Toronto hospital.
"They are prepared to do one, but they've never actually done one," Gendron said.
In the meantime, Braden is excited about the news.
"He's always said he never liked hockey," his mother said. "He didn't like sports. I think it was a coping mechanism because when he found out he qualified for a lung transplant, one of the very first things he said was, 'I'm going to be able to play hockey.'"
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