InFocus Magazine

On a bright and sunny September morning, back in 2000, a little boy stood on the pitcher’s mound at Lewis Park and did his very best to throw the first pitch of the game.

There wasn’t much chance of the ball reaching the batter—he was only two years old—but his dribble of a throw created huge smiles, more than a few tears, and a roaring cheer that was probably heard as far as Goose Spit. To those watching the game, especially to his mom who was at his side, that first ‘pitch’ was the best thing they’d seen in a long while.

The child standing on the pitcher’s mound that day was heart transplant recipient Robbie Thompson and the game was the third annual Robbie Thompson Slo-Pitch Tournament, organized two years before to benefit Robbie’s family—helping them to bear the financial burden of caring for a critically ill child.

Many longtime Valley residents probably remember the gut wrenching story of baby Robbie and his family. In 1998 and 1999 Robbie’s picture—that adorable baby face with those piercing old-soul eyes—adorned the front page of the local papers regularly as readers followed Robbie’s fight to stay alive. Robbie’s journey began when he was only five months old after was diagnosed with cardiomyopathy, enlargement of the heart.

“Robbie’s heart was supposed to be the size of a walnut, but instead it was the size of a grapefruit,” says Robbie’s mom, Sue Germain. “His heart was so big you could actually see it pushing out his ribcage on his left side. He was losing weight because the enlarged heart was pushing against his esophagus and that made it difficult for him to eat. He had difficulty breathing because his heart was crowding out his left lung.”

Initially, doctors tried to treat Robbie’s condition with drugs, but with time it became clear that his only option was a heart transplant.

After twice going into cardiac arrest, Robbie was finally flown to the Hospital for Sick Kids in Toronto to be monitored more closely while he awaited a new heart. Doctors informed Robbie’s family that the wait for a new heart would be longer than expected because of his rare blood type—B negative. “That was both bad and good,” recalls Germain. “Bad, obviously, because Robbie would have to wait longer for a donor that matched his blood type; but the good thing was that there would be less competition for the heart when one came available.”

In July of 1999, after being on the waiting list for 11 long months, Robbie’s condition was clearly deteriorating. “Robbie was so incredibly sick then. He’d been unconscious for two days, his kidneys were beginning to fail, he was listed as category four—life or death,” recalls Germain. “The doctors told me to start making funeral arrangements. Later in the day a priest came by, visited for a while and read from the Bible. I remember it was Psalm 23, the one that talks about walking through the darkest valley. Up until then I’d been extremely angry about what was happening to Robbie. But at that moment, while the priest read from the Bible, things changed for me—I just sort of gave my anger away. I prayed, ‘God, just take him, or give him a heart.’ I remember that I was finally at peace.”

Amazingly, that was when the situation changed for Robbie too, because a few hours later, at 4:00 am, the call they had all been waiting for came through. “I couldn’t believe it,” says Germain. “The nurses burst into the room yelling and telling me to get ready—that there was a heart for Robbie. I was in shock. We’d waited 11 months for a heart, but in 20 minutes two became available. We were able to take the best one.”

Though Sue and her husband Ron were elated that there was new hope for their son, they didn’t lose sight of what that really meant. “As soon as we could we ran down to the chapel to pray for the donor family that was grieving the loss of their child,” Germain says. “That’s the worst thing about organ donation—I’ve always been aware that someone had to die in order for my son to live.”

Robbie recovered well from his ordeal, but unfortunately, three years later he had to endure another transplant after doctors found blockages in his heart, putting him at high risk for heart attack.

“That second transplant was very profound,” says Germain. “I remember walking through the recovery unit days later, seeing other children who had received transplants on the same night as Robbie, realizing that there were at least five other children who were given a second chance because of one child. The parents of that child who died, though they must have been in terrible agony, they were able to say yes when they were asked about organ donation. In my eyes the donor families are the biggest heroes.”

And we need more heroes. In British Columbia there are 300 people currently waiting for an organ donation. Across Canada there are approximately 4,500 people awaiting a transplant. Unfortunately, the demand far outweighs the supply, and every year many people—between 200 and 300—die while they are on the waiting list. The statistics are frustrating because although most people support organ donation, only a small fraction have taken the time to sign an organ donation card or register online. For example, in BC, there are 890,000 people listed as official organ donors. That may seem like a large number, but it’s only 19 per cent of the population.

Canada has struggled over the years to bring our organ donation rate in line with other developed nations. Spain leads the world in organ donation statistics at 34 donors per million people. France, Italy and the US have rates between 20 and 30 per million people. Canada’s rate? Only 15 per million. There is an obvious need for more people to sign on as organ donors, but that’s only part of the solution.

People also need to make it clear to their family members that they want to be an organ donor. Here in Canada it is mandatory for hospital staff to inquire about possible organ donation when appropriate. Unfortunately, that is when relatives are going through what is possibly the most difficult time of their lives—coming to terms with the recent or imminent loss of their loved one. It’s not the ideal time to consider organ donation for the first time, but that’s the situation hospital staff have to face most times they approach a potential donor family.

“When people don’t register their wishes and don’t talk about their intentions with their family it makes it much harder to convince them to agree to organ donation if that time comes,” says Germain. “That’s sad, because I believe that organ donation is the best way to honor someone’s memory. One person can save as many as eight lives, and improve the quality of life for up to 75 people.”

It’s important to note that most people who receive an organ donation go on to live full and productive lives. “Since Robbie’s transplants, he hasn’t just existed, he’s had the most extraordinary life—a good, happy and productive life that honors the donor family,” says Germain. “His heart was a true gift. He needs to take care of it—so he lives healthy and he exercises.”

Robbie, now 16, doesn’t just exercise, he competes and wins. In fact, he has a wall of medals to prove it. Most recently, at the Canadian Transplant Games held this past July in Moncton, Robbie made British Columbia proud when he proceeded to win three gold medals, one silver and one bronze.

The Transplant Games, held provincially, nationally and worldwide, showcase the vitality enjoyed by people who have benefited from organ transplantation. “The transplant games are about celebrating the lives that are saved because of organ donation,” Germain says. “In fact, I’ve never seen a happier set of people. They’re all happy to be alive, right? They’ve all been granted a second chance at life, and they’re not letting it pass them by.”

In addition to celebrating lives saved, the Transplant Games are also about saying thank you to the donors and the donor families who have made it all possible.

“At one point during the opening ceremonies, donor families march into the arena while the rest of us stand and cheer,” says Germain. “It’s always very emotional, but also very inspiring. In fact, every year, each city that hosts the Transplant Games has a marked increase in the number of people listing themselves as organ donors.”

This past July in Moncton, during the 5K road race, Robbie pasted a picture of Ciaran Martin on his helmet. Ciaran was the young man who was killed this past January when he was hit by a car while he was long-boarding. Ciaran was the same age as Robbie.

“I raced with Ciaran’s picture pasted onto my helmet for two reasons,” says Robbie. “Firstly, although Ciaran died in a tragic accident, his parents allowed his organs to be transplanted, and because of that many other people are alive today. The identity of my donor families has never been revealed to me, but I do know Ciaran’s family, and by honoring them I honor the donor families who helped to save my life. I also put Ciaran’s picture on my helmet to draw awareness to the importance of wearing a helmet—Ciaran wasn’t wearing one when he was hit by the car.”

Robbie has competed in several Transplant Games throughout the years and he’s always done well. In 2009 he was able to represent Canada at the World Transplant Games in Australia, where he won a gold medal in cycling and two bronze medals in swimming. Next year the World Transplant Games will be in Argentina. Robbie would love to represent Canada at those games, but he can only go if he can raise the funds.

But before Argentina, Robbie has a responsibility that he’s had since he was only two—he’s expected to throw the first pitch at the tournament that carries his name. The Robbie Thompson Slo-pitch Tournament is always held the third weekend in September at Lewis Park and it consistently draws teams from all over the Island and the Lower Mainland. In fact, some teams have competed in the tournament every year since its inception 17 years ago. Over the years the tournament has raised more than $110,000 for local charities.

Besides throwing the first pitch, this year Robbie will be doing something extra special to raise funds and awareness for organ donation—he’s going to shave off his hair.

“Everyone knows me by my hair,” says Robbie. “When people describe me they say things like, ‘He’s the one with the big hair.’ So last year someone dared me to shave it off during the next tournament. I said yes and so I’ve been growing it out ever since. It’s been a challenge, having even longer hair than usual. For example, it can get full of knots if I don’t manage it. But I made a promise last year, and when I make a promise I stick to it.” Robbie will sit down for the big shave on Saturday night, September 20.
At the tournament Robbie and his mom will also be manning a table where people can get information about organ donation and sign donor cards. Robbie will be the one wearing the T-shirt that says, ‘I run on spare parts.’

“Robbie and I will be there, encouraging people to sign donor cards,” says Germain. “It’s important to get the word out to as many people as we can, to raise awareness that organ donation saves lives.

“I mean, it’s more likely that we’ll need an organ donated to us than it is that we’ll be organ donors. The odds are in our favor. And like I always say, it’s the best form of recycling around.”

To become an organ donor register online or request a registration card at www.transplant.bc.ca.  Note that if you have an organ donor sticker on your BC CareCard it is no longer valid—you must register again at the above website.  If you’d like to support Robbie’s wish to represent Canada at the World Transplant Games in Argentina you can donate to the Robbie Thompson Trust Fund at any Coastal Community Credit Union branch.

The Robbie Thompson Slo-Pitch Tournament will be held Sept. 19, 20 and 21 at Lewis Park. For more information call organizer Jim Lalic at 250-331-1206 or email
[email protected]