In late April, seven-month-old Delfina Budziak moved into Toronto's Hospital for Sick Children to wait for a donation to replace her failing liver.
Less than three weeks later, her father, Peter Budziak, heard from a co-worker that Ottawa Senators owner Eugene Melnyk needed a liver, too. A public appeal made on Melnyk's behalf, at a news conference and shared on his hockey team's widely followed Facebook and Twitter accounts, attracted more than 500 people willing to offer up part of their livers.
The hockey magnate didn't cross Budziak's mind again until Delfina's mother was initially ruled out as a suitable match for Delfina, who was diagnosed with biliary atresia, a condition in which the bile ducts of the liver are blocked or not fully developed. Budziak pulled out his mobile phone and tapped out a plea on his Facebook page, and asked a few friends to spread the word.
The tactic had worked for Melnyk, he thought: "Maybe that can work for us."
But even as it serves as an inspiration for some, Melnyk's case still makes others uneasy. It highlights an issue that many in the field of organ transplantation are now trying to grapple with: how to approach public solicitations for live organ donors in the age of social media. And it raises a thorny debate around whether an individual's popularity, social status or media savvy gives him or her an unfair advantage.
Melnyk's public appeal resulted in an anonymous donor stepping forward to save his life, "and that was fantastic," says Dr. Steven Paraskevas, president of the Canadian Society of Transplantation, the national organization of transplantation professionals. "On the other hand, someone may be still waiting for a liver somewhere and say, 'What about me?'"
Answering such questions is complicated by the fact that policies and protocols for dealing with live organ donations are left up to the individual transplant programs across Canada – and not everyone is on the same page.
This lack of consistency was underscored by the case of a British Columbia baby in Edmonton that made headlines earlier this month. A public appeal to find a liver donor for Curtis and Meredith Carlow's eight-month-old daughter, Naomi, was thwarted because Alberta Health Services currently accepts liver donations only from living donors who have a close relationship with the recipient.
That policy nullified the possibility of using an anonymous living donor, unlike what Melnyk had done in Ontario just weeks earlier. (Alberta Health Services declined an interview but issued an e-mail statement, saying it is reviewing its living liver-donation protocols and procedures.)
"Having the ability to reach more people – is it something that gives someone an advantage that would be considered unfair or inappropriate? That's where it gets a little bit murky," says Paraskevas.
In Canada, most transplants involve organs from deceased donors, which must be given to whoever is first on the various provincial waiting lists or in the most urgent need.
Transplants can be performed with organs that come from live donors, too – with kidneys, a portion of one's liver and, on very rare occasions, lungs. In the majority of these living-donor transplants, donors are family members or friends of the recipient. As Paraskevas explains, close relationships between donor and recipient are welcomed, since it can be considered in the donor's interest to help a close relative or friend.
Regularly, although infrequently, some living organ donations are made with no specific conditions about who receives the organ. These types of so-called anonymous undirected donations are then treated the same way as organs from deceased donors; they go to whoever's been waiting longest or is in the greatest need.
But questions of fairness arise when strangers direct their organ donations to a specific recipient, which is what happens with public solicitations, Paraskevas explains.
"The question is, can you know someone who you only know through social media? And if you're going to risk your life to give them a kidney, or risk it even more to give them half your liver, should you know them better than that? And if you don't, aren't you really just giving an organ to whoever?" he says, adding, "If you're giving an organ to whoever, maybe we [transplant professionals] should be allowed to decide where it goes."
To address some of these issues, the Canadian Society of Transplantation is hoping to draw up some guidelines to present to its members at its annual meeting this October, Paraskevas says. The goal is not to discourage any kind of organ donation, he emphasizes, but to determine how transplant teams could optimize them for the public good.
"As far as we're concerned in the transplant centres, a patient's story isn't part of the allocation of organs. We don't give them to the best story or the biggest heartbreak," he says. "But what happens on social media is that the best story wins."
It won't be easy reaching a consensus. According to Linda Wright, director of bioethics at Toronto's University Health Network, social media is merely an extension of how people have always sought out living donors, through word of mouth, over the telephone, through notices in community newspapers or through their churches.
Social media, however, can expedite the process, which is particularly helpful for patients waiting for a liver, whose conditions may be more urgent, Wright says.
She notes that people are now accustomed to using Facebook and other sites to stay in touch and maintain relationships anyway. "Why not use it for this, too?"
Not only do public solicitations help increase the chances of someone finding a donor, they also tend to encourage additional donors to come forward, who can potentially help other people in need, Wright says. Moreover, a successful match takes the recipient off the waiting list for organs from deceased donors.
Approximately 4,500 Canadians are waiting for an organ transplant. The vast majority of them are waiting for kidney donations. According to the Canadian Blood Services National Organ Waitlist, 815 patients are waiting for other organs, including heart, lung, liver and small bowel.
For Peter Budziak, posting Delfina's story on Facebook was also far less difficult than individually asking friends and relatives to help his daughter. "I just didn't want to go through that awkwardness of having to ask people one-on-one – not only awkwardness for me, but obviously awkwardness for them. Because then they would maybe feel pressured to say yes."
While he initially hoped his Facebook post might be answered by cousins or other people within his social network, his appeal quickly took a life of its own. It spread online and was picked up by newspapers and television and radio stations. The family received more than 1,100 e-mails from people interested in helping Delfina.
About 30 of them took the next step toward being evaluated by filling out a health-history form and sending it to Toronto General Hospital, part of the University Health Network that also handled Melnyk's transplant. Based on the urgency of a case, rather than the publicity it generates, the transplant program's living-donor assessment team may bring in extra people to help sort through the applicants and narrow the field.
Before proceeding with donor evaluation, a suitable candidate needs to undergo blood-type testing and blood work. Further testing would require an electrocardiogram and chest X-ray, CT (computerized tomography) scan, ultrasound and MRI (magnetic resonance imaging) and, sometimes, a liver biopsy, where a tiny piece of the liver is removed and tested. Only about 20 per cent to 30 per cent of interested donors actually end up undergoing surgery to donate part of their livers, according to Toronto General Hospital.
Ultimately, the social-media campaign was unnecessary, as Delfina received a successful liver transplant from her mother earlier this month. But hoping to make the most of the interest they've generated, the Budziaks have been encouraging those who contacted them to register as organ donors in the event of their deaths or even consider becoming living donors to other recipients.
"There can only be one donor for Delfina. That leaves 1,099 other people who could possibly donate to someone else," Budziak says.