OXFORD, N.S. – Brody Kouwenberg loves hockey.
After asking his parents for several years if he could play, the plucky eight-year-old Oxford boy finally got his wish, but only after getting medical clearance.
You’d never know it, but Kouwenberg was born with a heart defect that required open heart surgery moments after he was born and a second operation several years ago to implant a pacemaker that keeps his little heart beating.
“He’s our little miracle,” mother Jennifer Kouwenberg said as Brody slipped on his hockey equipment and waited for her to lace up his skates. “We’re just so thankful every single day and we can’t get over his attitude. He’s just so positive about everything in life. He never complains or asks ‘why me?’ I can’t describe how proud we are of him. He isn’t going to let anything hold him back.”
Kouwenberg, who calls himself Astro Boy, like the cartoon robot, was born with a complete fetal heart block, which is a disorder of the heart’s electrical system that controls the rate and rhythm of heartbeats. The heart block occurs when there is a disruption, preventing the electrical signal from the upper chambers of the heart from reaching the lower chambers, or ventricles.
“The electric signal doesn’t travel through his heart so he’s completely dependent on his pacemaker. That’s what makes his heart beat,” she said.
The disorder was diagnosed just 18 weeks into Kouwenberg’s pregnancy and she was afraid she was going to lose Brody. She and husband, Steven, decided to continue the pregnancy and their son was rushed into surgery right after birth.
“We were given a pretty bleak outcome and told we’d probably be better off terminating, but we weren’t going to give up on him,” she said.
Kouwenberg didn’t think Brody would ever be allowed to play sports like hockey. In fact, the doctors at the IWK Children’s Hospital, where he goes for regular checkups, said hockey was one sport he could not play.
“Brody asked his doctor if he could play hockey every time he’d go to the hospital and the answer was always no. Last summer, he asked his doctor again and the answer was he could give it a try and see how it goes,” Kouwenberg said.
Despite this, Brody developed a love of hockey and can’t get enough of it. He loves the Pittsburgh Penguins and idolizes Sidney Crosby, who despite his own health issues several years ago has continued to star in the NHL with a trio of Stanley Cups.
He also loves the Amherst CIBC Wood Gundy Ramblers and was honoured as a seventh player earlier this season, getting to skate out onto the ice at the Amherst Stadium and stand at the blueline for the national anthem.
Kouwenberg admitted to being more than a little nervous the first time Brody put his gear on and headed out to practice with is novice Timbits team.
“I have to admit when the doctor said yes, I was like no, no, no,” she said. “I know I can’t hold him back he loves it so much. He’s such an inspiration.”
Now, he spends about nine hours on the ice every week between general skates at the Oxford Lions Recreation Centre, power skating and regular minor hockey ice times.
“He’s never missed a practice, he’s happy to play and loves it so much,” she said. “We let him do it. We can’t hold him back. We have always wanted him to feel like a normal kid, we never wanted him to feel as though he was different in any way. He knows his limits and he’s always willing to push his own boundaries. The doctors say he’s not the typical heart patient because he’s always wanting to push himself.”
There are some precautions to him playing, she said. She goes to every ice time and knows where the defibrillator is at every rink and has passed on advice to his coaches on what to look for should he run into trouble – a situation that yet to occur.
Besides hockey, he also plays soccer and swims – something she feels will help develop his chest muscles because he will need to continue having heart surgeries until he gets a heart transplant.
She said Brody will eventually need a new heart and both she and Brody want people to think of being an organ donor and not only signing a donor card, but having a conversation with family members should something happen.
He’s also left a lasting impression on those he encounters, such as Ryan Reynolds, who coaches him in minor hockey. Reynolds was so impressed with Brody’s attitude he invited him to participate in his Be Better motivational seminar on Feb. 1.
Reynolds, who was helping with an IQ Hockey Power Skating program, was told by Brody’s mother about his condition. He admitted to feeling terrible at first because he was pushing him to work harder in every drill.
“His mother said it was OK for him to be pushed as the doctors had given him full clearance to do all the regular activities other kids would do,” Reynolds said. “Jennifer also told me that her son always wanted to play but simply wasn’t able until this year.
Hearing the story and seeing his positive attitude left Reynolds awestruck.
“He has never treated his condition as a negative. In fact, he’s looks at it positively and refers to himself as Astroboy and a robot,” Reynolds said. “As soon as I heard himself say he was a robot I remembered a story my wife, Lacey, told me about this amazing kid she had seen when she was working a shift in the emergency department at the hospital. She told me how amazingly positive he was and how he said he was special because he was a robot. When she told me the story you could see how happy it made her about a job where so many negative things happen. It was great to see her come home so positive and happy as opposed to being tired and stressed. That’s when I realized Brody was that boy.”
He said Brody is an example of how any kid, not just one with a heart defect, should have a positive attitude and a good work ethic. It’s something that resonates with him because it’s a message he reinforces with his own son, Reid.
“This is exactly the type of lesson I try to teach my kids, and to see a young boy who has every right to be negative, but makes the choice to create a positive attitude is simply refreshing, inspiring and amazing,” he said. “Every human can learn a lesson from this young boy and Atlantic Personal Development, which includes myself, Jason Capson and Patrick Manifold, want to help him spread his message to as many people as possible.”