Organ transplant and donorship is something that typically doesn’t cross the mind of an average person — until they or someone they love are in a life-altering situation that requires it.
Over 249 Canadians passed away in 2019 waiting to receive a lifesaving organ transplant. That staggering number alone is cause enough for us to stop being reactionary, and get proactive — the lives of our neighbours, family, and friends depend on it.
Let’s look at the numbers:
700+ Albertans and 4,500+ Canadians are currently on that very waiting list.
90% of Canadians say they support organ donation, but only 32% have officially registered this decision, according to Canadian Blood Services.
Only 1-2% of all deaths qualify as a potential organ donor.
Up to 8 lives can be saved and up to 75 lives can be enhanced from just one organ and tissue donor.
More Transplants states that “Canada is in the lower of developed countries in terms of donation activity per million — and Alberta lags the national average.”
Alberta Health states that “there’s a greater chance that you will require an organ transplant than there is of ever actually becoming a donor.”
On September 30, 2018, Leslie Gould gave birth to her son Walt. Everything went completely normal and everyone was healthy — so they thought. But when Walt was only 18 days old he was admitted to the Children’s Hospital, and diagnosed with biliary atresia.
“It was horrible with the catheters and the needles. There’s no easy way to diagnose a child so young and rule out all the options,” says Gould.
Biliary atresia is a rare disease that 1 in every 20,000 babies are born with, causing the tubes carrying bile from the liver to the gallbladder to be blocked.
“In our case, Walt had developed this disease because of a virus he had been exposed to at the very end of my pregnancy,” says Gould. “We were shocked, because there was no way of knowing — I wasn’t sick at all.”
Gould learned from their doctors that biliary atresia is time-sensitive and it can do a lot of damage if left undiagnosed. So Walt underwent a surgical test to either confirm or rule out his diagnosis. What started off as a simple laparoscopic procedure to test the bile flow between his gallbladder and liver, quickly turned into a seven-hour surgery to reestablish his bile flow all-together.
“They had to remove his entire biliary tree (bile duct) and reconstruct how it was attached to his liver, but this new structural modification doesn’t allow the bile to flow as well as if you had a fully functioning biliary tree. So over time, his liver will degenerate to a point where he’ll require a life saving liver transplant — and there’s no way of knowing when exactly that will happen.”
“We’ve been so lucky that he’s gotten this much time from his surgery — he’ll be three this year.”
Gould mentions that when the initial surgery doesn’t work on kids they get sent for a liver transplant before they’re one, but most kids with this disease have their transplant before the age of 10.
The trade-off of a transplant
Unfortunately, there is no actual cure for biliary atresia and as Gould points out, “a transplant is just like the second stage of treatment, but you’re basically trading one disease for another.”
“They want to make sure they time the transplant perfectly, so they know for sure your native liver is honesty out, because the liver is such a fascinating organ — it can regenerate — and the immunosuppressive medication you have to take afterwards is so hard on the rest of your body and all your other systems.”
Regardless, kids like Walt need these liver transplants to survive, but the transplanted liver is meant to last for the rest of a patient’s life.
Becoming a donor is easier than you think
If we refer to the stat above, 58% of people that support organ donation in Canada have yet to register, but why?
“One of the things we hear the most is just how easy it really is to register yourself — it barely takes 2-minutes,” says Gould. “Many people think they need to wait until your license is up for renewal, but you don’t even need to go to the registry. You can do it online.”
Gould urges people to not only register, but to share those wishes with your family.
“Knowing this they won’t need to question that decision in the moment, and it will allow them to get some peace from making that choice knowing that is what you wanted. I know a lot of donor families do get a lot of comfort out of knowing that their loved one did go on to help someone else.”
Become a donor so as a community we can begin to depend on each other — when life requires it the most!
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