— -- A family desperately searching for a liver donor for their twin daughters have started a campaign in order to find a stranger willing to donate to save their girls.
Binh and Phuoc Wagner, 3, of Ontario, Canada, both need liver transplants because of a genetic condition called Alagille syndrome, which can affect bile ducts in the liver and lead to severe liver damage.
The twins were adopted in from Vietnam in 2012 by Johanne and Michael Wagner, who were aware the girls’ livers were in trouble during the adoption.
“We knew they were very ill,” Johanne Wagner said. “Those girls knocked on our doors and they were supposed to be with us, and it just took a different path. As soon as we heard about them, we knew they were they were part of our family.”
Last year, the girls’ condition worsened to the point that they were able to be put on a transplant list. While the girls each need their own donor, the family was delighted to find out that Michael Wagner was a donor match.
Wagner can only give liver tissue to one child because of the way the liver regenerates. Doctors will determine which girl is sicker and she will undergo the procedure.
“We found ourselves to be very lucky that we qualified right away,” said Johanne Wager of her husband being a match. “[We’re] relieved but we need one more donor.”
The family has now turned to social media and public outreach in the hope that a stranger could be a match and also be willing to undergo a rigorous medical procedures and an operation in order to save their daughter’s life.
After starting a Facebook page to draw attention to the twins' story, Johanne Wagner said hundreds of people started flooding her Facebook page offering to be a living donor. Wagner is directing anyone interested to the Toronto General Hospital Living Donor Assessment Office to see if they fit the profile.
Dr. Les Lilly, the medical director of liver transplant at Toronto General Hospital, estimated that anonymous living donors account for a fraction of liver donations, but that with social media the practice could become more commonplace.
“We do have people who step forward and want to help out, and they’re considered anonymous donors,” said Lilly. “I think there’s a greater awareness,” of being a living donor through social media.
Lilly cautioned that becoming a living donor is not easy. A person’s blood type must be compatible with the recipient and they must pass a battery of tests to ensure they are healthy enough to donate. After the operation, they have to be out of work for weeks as they recover.
Lilly said hospital officials go slowly with tests so that donors are not overwhelmed and feel they still can change their minds.
“We’re very, very conscious of donor safety,” said Lilly. “We realize some people might go into process very enthusiastically,” but later decide it is not right for them.
Billie Potkonjak, director of health promotion and patient services at the Canadian Liver Foundation, said they’re seeing more and more anonymous living liver donor cases.
“Certainly, the proliferation of social media makes it easier for people to go public with their situation and to talk about it publicly,” said Potkonjak. “It definitely highlights the need for organ donation.”
Johanne Wagner said it’s likely her husband will donate his liver to one of the girls within the next few weeks.
In spite of the difficulties they’re facing, Johanne Wagner said they’re staying positive and thankful for the public’s support.
“We would travel this road all over again,” she said.