Michael and Johanne Wagner’s adopted three-year-old twin daughters, Binh and Phuoc, have Alagille syndrome, a genetic disorder that affects liver function.
Both girls need a partial liver transplant to survive.
Michael is a match donor, but he can only give the necessary portion of his liver to one daughter.
“We need people to come forward, people who are willing to be assessed to be live liver donors,” said Johanne in an interview with CBC News Sunday.
“Things could turn around very quickly on us and their condition could get worse.”
'We're going to move forward'
The Wagners — who have seven older children and reside in Kingston — adopted Binh and Phuoc from Vietnam in November 2012 when the girls were 18-months-old.
“When we went to Vietnam, before we went, we knew that they were very ill and we knew it was liver-related,” said Michael. “We said, ‘alright, we’re committed and we’re going to move forward with the hope that everything is going to be OK.'”
The girls’ conditions worsened over time, however, and now a live liver transplant is the only option to keep them alive in the long term.
“In both the girls it’s quite advanced and it can’t be improved or maintained with medicines or other surgeries, so we’ve been forced to list them for a liver transplant,” said Dr. Binita Kamath, a physician who treats the twins.
Because Michael can only save one of his daughters, doctors will decide which of the girls gets a transplant first based on the severity of symptoms each is suffering.
“I think we will make the decision based on facts and keep it as dispassionate as possible … We feel comfortable making this decision,” Kamath said.
Keeping a promise
The family has turned to social media with a Facebook page that lays out the requirements for potential donors in the hope that someone will step forward. They say they won’t stop until both twins have a chance of survival.
“It was what we promised from the beginning when we picked them up from Vietnam. We promised we would do everything in our power to make everything OK, and this is just keeping that promise,” said the girls’ father.
The couple says they hope the first transplant will happen as early as next month, but hope both girls can undergo the procedure around the same time.
A potentially suitable donor must fulfill the following criteria:- Be older than 18 and younger than 60 years of age.
- Be in good overall health.
- Have a compatible blood type (A or O in this case).
- Have a BMI of less than 35 prior to the operation, and a BMI of no more than 32 on the day the procedure.
Donors can expect to spend five to 10 days in hospital. The donor’s liver will regenerate within about six to eight weeks, doctors say.
If you might meet the criteria and are willing to undergo the necessary tests, you can contact Toronto General Hospital at 416-340-4800 extension 6851.