Liver donor plea by Michael and Johanne Wagner aims to save both twins

It's a decision no parent or medical professional would want to make.

An Ontario dad with twins who both need a liver transplant is a match to donate part of his organ, but can only help one of the three-year-old girls. Unless Michael Wagner and his wife Johanne's public campaign for another donor succeeds, doctors may need to choose which of their daughters undergoes the lifesaving operation first.

The Wagners adopted Binh and Phuoc knowing the girls have Alagille syndrome, a genetic disorder that affects liver function.

“We need people to come forward, people who are willing to be assessed to be live liver donors,” said Johanne Wagner in an interview with CBC News on 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 — 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 Wagner. “We said, ‘All right, 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 for 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, who treats the twins.

Because Michael Wagner can only donate to one of his daughters, doctors will decide which of the girls gets a transplant first based on the severity of each child's symptoms

“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. 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 hopes the first transplant will happen as early as next month, but that both girls can undergo the procedure around the same time.

A potentially suitable donor must fulfil the following criteria:

• Be older than 18 years old but younger than 60.
• Be in good overall health.
• Have a compatible blood type (A or O in this case).
• Have a body mass index (BMI) of less than 35 prior to the operation, and no more than 32 on the day of 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 testing, contact Toronto General Hospital at 416-340-4800, ext. 6581.