Nova Scotia

Trudeau Liberals asked to change organ donation system by mother of ill toddler

A mother in Halifax whose 17-month-old son needs a kidney transplant is pushing for the federal government to change the rules about organ donation so that it is presumed people will donate unless they opt out.

Nova Scotia considered switching to a presumed consent program, but decided against it

Ashley Barnaby says hearing there might be a kidney for her young son was a "dream moment" and she's trying to adjust back to reality with news it wouldn't be suitable. (CBC)

A mother in Halifax whose 17-month-old son needs a kidney transplant is calling on Prime Minister Justin Trudeau's Liberal government to change the rules on organ donations so that it is presumed people will donate unless they opt out. 

Ashley Barnaby says her experiences waiting to hear about an organ donor for her son Zaccari motivated her to start an online petition.

Under the current rules, people must consent before they die to be eligible donors. 

"Some people just don't have the time, or forget to sign up," Barnaby said. "And then those organs are just wasted. They could be living on in other people and helping them."

17-month-old Zaccari Buell is hooked up to tubes most of the day and spends every night on dialysis. (Stephanie vanKampen/CBC)

Zaccari has spent most of his life in IWK Health Centre in Halifax. He needs medication throughout the day and every night he's hooked up to the dialysis machine.

His mother says receiving a kidney would be the chance at a normal life. 

"There are other families out there who are waiting for their gift of life — and if we're able to get a couple people to sign up or even think about it, it really hits home for us and it's a good cause," she said.

So far, more than 1000 people from across the country have signed Barnaby's petition.

Barnaby wants the federal government to encourage a country-wide presumed consent rule. Last year the Nova Scotia government considered switching to implied consent, but decided against it. 

Better than average donation rate

Stephen Beed, a critical care physician and medical adviser for the Nova Scotia Organ and Tissue Donation Program, says it's something the province should consider in the future.

He says the province already has good donation rates, but its size and relatively homogeneous population makes it well suited for starting a presumed consent program. 

Dr. Stephen Beed, medical advisor for the Nova Scotia Organ Tissue Donation Program says there are about 100 to 125 transplants in Atlantic Canada every year. (CBC)

"We may be the best province in the country to consider that," he said.

Nova Scotia boasts a rate of about 20 donors per million people, better than the Canadian average of about 14 per million. The highest donor rates in the world are about 35 donors per million, according to Beed.

Yet at any given time, about 150 people are waiting for an organ. 

He says revisiting the issue could ensure fewer people go without. 

"So that donation becomes the norm, it becomes an expectation. It's not an add-on. It's the expectation of every health care professional that that's what we do if the opportunity arises. Right now it's an uncommon event and an add on," Beed said.

System could give families a say

Any program would require steps to educate the public and an opt-out registry, he said. 

"I think the biggest concern by some is the notion the government will somehow take control over decisions around your body or that family's needs won't be respected at the end of life," Beed said.

He says in most countries with a presumed consent system, health care providers are still able to take into account a family's wishes — something that could help alleviate those concerns. 

This week Ashley Barnaby's hope surged when she received the call she'd been waiting for, that a kidney had become available.

Zaccari was prepped for surgery but a problem with the donor kidney means he's back on the waitlist. 

Barnaby hopes she'll be able to donate her own kidney for her son. For now, they wait.

"It's part of our roller coaster," she said. "We pretty much have to live day by day and take it as it goes."

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