‘You kind of have to find your own’: Why Canadians are turning to Facebook to find kidney donors

Michelle MacKinnon and Taylum Lamoureux, the boy she gave a kidney to. Courtesy, Michelle MacKinnon

Michelle MacKinnon was at home alone, scrolling through Facebook one day in 2015 when a post caught her eye.

It was the story of Taylum Lamoureux, a two-year-old boy who had spent the first six months of his life in hospital due to autosomal recessive polycystic kidney disease, which quickly cost him both his kidneys. He was visiting Toronto’s Sick Kids hospital every day for dialysis that kept him alive. He needed a transplant to have a more normal life, and a possible donor had just fallen through.

The post got to MacKinnon. “I got upset when I read it and I cried. And I actually, I slammed my laptop closed and I tossed my computer across the couch.”

But after thinking it over, she picked her computer back up.

“Some time passed and I thought, ‘Maybe I’m supposed to donate. Maybe I will match this child.’”

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She messaged the mother, Desiree Lamoureux, and told her own story. Her son, David, had died as a teenager – the same day Michelle was supposed to donate her kidney to try to save his life.

And years later, she still wanted to donate. So she volunteered her kidney to Taylum.

A few weeks after, the two mothers met. “I just remember seeing her standing there, and her blue eyes. I just hugged her,” said Lamoureux.

“It’s hard to thank somebody or even know what to say to somebody who’s going to put their life on the line to save your child.”

Low supply

The Lamoureux family aren’t the only ones who have found organ donors online. Many Canadians turn to social media to find a donor.

There’s a very simple reason for it: there aren’t enough kidneys in the donation system for everyone who needs one.

READ MORE: Nearly 100K register to donate organs after Humboldt Broncos crash

“There is a shortage of organs. People are waiting a long time before getting a transplant,” said Dr. Marie-Chantal Fortin, a transplant nephrologist in Montreal and the chair of the Canadian Society of Transplantation’s ethics committee.

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“In Quebec, we have more than 700 patients waiting for a kidney. And every year, about 200-250 patients are getting transplanted. So there is a discrepancy between people waiting and people getting transplanted and they have to wait a long time.”

Wait times can be brutal. According to Joyce Van Deuzen, executive director of the Southern Alberta and Saskatchewan branches of the Kidney Foundation of Canada, a person in Calgary might wait eight to 10 years for a kidney from a deceased donor.

“When people hear those numbers, they think, ‘Oh my gosh.’ Being on dialysis for that long with your health slowly declining is not a good alternative.”

“The average length of time a person lives on dialysis is maybe four years or so. If you hear that news and you hear the wait for a deceased donor organ is eight to 10 years, the math doesn’t add up.”

There are more potential organ recipients, she said, but the number of kidneys from deceased donors hasn’t kept pace.

“It’s so long because there are more and more people with organ failure. We’re better at saving people’s lives. We’re better at prolonging life.”

“So there’s many more people needing organs and the supply of organs is just not meeting that need.”

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That leads some people to look for a living donor instead – and many of those people turn to strangers.

The hunt

At the beginning of August, Karen Malcolm-Pye put out a video of her dad, Bruce Malcolm, to find him a kidney.

READ MORE: ‘I want my dad around longer’ - Calgary family uses social media to try to find a kidney

“We decided to go this route because my dad will likely not survive waiting for a kidney in Canada,” she said. “I just figured that social media and media outreach was the best way to tell this story, to educate people, and to hopefully give people an opportunity to come forward and potentially save a life.”

After local media reported on the story, she got a flood of responses. “We received probably the best part of about 70 emails.”

“Some people just inquiring, wanting to learn more. Others were generally interested in calling the kidney office. Some of them have followed up with us so we know that they’ve called the kidney office on behalf of my dad, Bruce.”

WATCH: Calgary woman Karen Malcolm-Pye is hoping that a social media and video campaign will help to find a live kidney donor for her dad, Bruce.

Click to play video: 'Bruce Malcolm is turning to social media to find a new kidney'
Bruce Malcolm is turning to social media to find a new kidney

But since then, the emails have slowed. “We’re not getting new emails from people. I almost feel like it’s getting a little bit stagnant.”

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So the family is waiting, trying to be patient and hoping one of those responses turns into a match.

“It is tough because we are waiting and so curious and would love to contact everybody but we just figure that patience is the best journey for us right now because we know that if it is a positive, we will be hearing from them.”

She has no regrets reaching out through Facebook the way she did. “I do recommend to anybody who is looking for awareness or looking for support or looking for organ donation to make it as public as they possibly can.”

Some people even find it easier to use Facebook to ask for a kidney donation than to approach friends and family directly, said Van Deuzen.

“Sometimes, social media is a way that they can share that news also with family and friends in a way that sometimes feels a little bit more comfortable.” People’s family and friends often post on their behalf – looking for a donor for their loved one.

Unlike the deceased donor waiting list, when it comes to finding a living donor, “You kind of have to find your own.”

The ‘beauty contest’

There are some things to consider though, when you’re looking online. A good story goes further and gets more attention – and more potential donors – than someone less sympathetic might.

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Fortin calls it a “beauty contest”: “People with the most attractive story or the most appealing story will get a living donor.”

At the same time, she says, “We cannot prevent people from trying to save their lives and find a living donor.”

READ MORE: Woman receives life-saving kidney donation after placing ad in Toronto magazine

Transplants from living donors tend to be more successful, and for every person who gets a living donor, that means one person comes off the transplant waiting list, she said.

“Of course, if there were enough organs for everybody I don’t think that patients would go on social media.“

Van Deuzen said that increasing the supply of deceased donations is an essential step to reducing the problem. People who want to become organ donors need to make their wishes clear and let their families know, she said.

Making sure every death within a hospital is referred for evaluation and consideration for organ donation is important too, she said, and hospitals need to be able to handle those organs. People also need to be more aware that living donation is a possibility.

“We just need to be talking about this and we need to move people from positive intent, ‘Yeah organ donation is a good thing and maybe I should be doing this,’ to action.”

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WATCH: How to become an organ donor in Canada

Click to play video: 'How to become an organ donor in Canada'
How to become an organ donor in Canada

That’s a message repeated by organ donors and those whose loved ones have received them.

MacKinnon gave away her kidney, she said, because she knew what it was like to have a loved one on dialysis and to lose him. “I only have the one kidney to give but honestly if I could grow them, I would.”

“There are so many people that are waiting. It would be nice if people knew what it’s actually like from a donor perspective for people to donate a kidney.”

It was painful, she said, but she recovered quickly.

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Michelle MacKinnon and her son, David, who died before she could donate her kidney to him. Courtesy, Karen MacKinnon

Although Taylum, now five, still has medical issues, his mother is grateful for the kidney that saved his life. “I don’t take a single day for granted,” said Lamoureux.

If MacKinnon hadn’t contacted her through Facebook, she would have kept trying, she said. “When your child needs something that’s life or death, you’d move heaven and earth to make it happen for them.”

“I wish people would think more about organ donation. People who are healthy who have healthy kids, aren’t dealing with anything like this, they don’t often think about it.”

“I can’t think of any other way that you can have a bigger impact or leave a better mark on this world than doing this thing that is completely unselfish,” she said.

“I have lots of friends whose kids are still waiting and living in the hospital like we were.”

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If you’re interested in learning more about becoming a living donor, the Canadian Transplantation Society has a list of local transplant programs on their website.

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