For families with loved ones in desperate need of liver transplants, exhaustion and a readiness to give up hope happens all too often. There are not enough livers from living or deceased donors to meet the need. With their options fleeting, it is not uncommon to see families turn to social media in their search for a living liver donor.
In fact, a 2010 study found that 11 out of 12 anonymous liver donors first heard of anonymous organ donation via media appeals. These public appeals give a face to the more than 400 people in Canada waiting for a liver transplant.
That is why in 2016 when eight-year-old Gianna-Lynn Favilla made a public plea for a liver donor, Heather Badenoch did not hesitate to apply. Her motivation was that we must do better as a society than merely hoping someone else will swoop in and save the day; action must be taken by ourselves.
While Gianna went on to receive a successful liver transplant from another living donor, Heather asked to stay in the screening process to give to whichever child needed her liver the most—thus embarking on a two-year journey that would ultimately reshape her life.
Heather began her journey with the University Health Network (UHN) Transplant Team, a group that in 2017 became North America’s largest transplant centre. They have performed more than 700 living liver donor transplants since 1999.
“Why save the life of a stranger?” Heather asked rhetorically during a series of tweets published in late May 2018. “For a family out there, this is their child—and this child needed this piece of liver more than I did.”
Becoming a living liver donor to a stranger is a meticulous process with many precautions taken by the transplant team. The journey involves physical testing (CT scans, MRI’s, blood tests, ECG and x-rays) and a psychological evaluation to ensure that, for example, the decision to donate is not impulsive or the result of pressure by another party.
“Before I ever filled out a form, [the living liver donor website] had so many pages on the process, the surgery, and the possible complications. All ready for me to read,” says Heather during a conversation with Liver Canada. “I met with four surgeons who spent the time talking with me, advising me and making sure I understood the decision to give—it’s really something.”
Unfortunately, not all of those who apply to be a living donor are deemed a suitable fit for transplantation. Transplant centres review a plethora of detailed criteria in order to match donors with recipients, including (but not limited to) the compatible liver size and blood type.
Heather happily passed all the necessary testing and was matched with her first potential recipient in 2016. Shortly after a transplant surgery date was set, however; her anonymous recipient became too ill. The transplant team was first forced to postpone the surgery and, ultimately, cancel it all together.
Keeping the anonymity of the recipient, the only explanation Heather received from the transplant team was that the transplant was ‘no longer foreseeable’.
“It was a sad time,” says Heather. “Even though this child and their family were strangers, it was heartbreaking we’d come close to saving his or her life, but the chance slipped away”.
Understandably, Heather decided to take a break from becoming a living donor during this emotional time. She picked the matching process back up the following year and her goal was achieved once again; she had a new match and her surgery was set.
Heather successfully donated 30% of her liver to a child during a transplant surgery between Toronto General Hospital (TGH) et SickKids. Aside from being told that the surgery was successful and the recipient was doing well, she will not ever receive any more information on the child whose life she saved. The only correspondence they will have is a one-time anonymous letter sent through the transplant office.
Heather spent a week recovering in hospital. She made incredible progress in recovery, easing back to her consulting business 11 days post-surgery. Her liver would go on to successfully regenerate to its normal size within a few months.
“I haven’t found the words yet to describe the emotional high I’ve been on in the months following surgery,” says Heather. “I find myself thinking about the child all the time and thinking about what milestones they will be able to achieve over the years of their life.”
Now back to her regular routine, Heather is left with a four-inch scar which she says, “provides perspective” and is a “reminder of what matters” in her series of tweets. Aside from not sweating the little things, Heather is as clear as ever about what she wants any reader to take from her story.
“For all those (at least in Ontario), flip your health card over and check if it has the word ‘donor’ on it,” says Heather.
“If it doesn’t go online and register. Now that you know what it means to be a living donor, give it some serious thought! Think about if you can be the reason someone gets to be taken off the waiting list”.
If by reading this, you thought this marked the end of Heather’s living organ donor journey—you may want to guess again.
“I plan to do it again,” says Heather. “A family member has Lupus and could need a kidney—it’s here whenever she needs it”.
