A Canadian family is desperately searching for a possible liver donor for one of their twin daughters after they learned that their father, who is a match, can only donate enough of his liver to save one of them, CBC is reporting.
Michael and Johanne Wagner of Kingston, Ontario, are the parents of three-year-old twin daughters, Binh and Phuoc. Both girls suffer from Alagille Syndrome, a rare and fatal liver disease. A liver transplant would save both girls’ lives, but so far the only match doctors have found is their father, and he only has enough liver tissue to save one of them.
The girls’ mother tells CTV News that the family didn’t want to have to decide which of the girls gets life and which girl will die a slow and agonizing death. Instead, they’ve decided to allow doctors to decide which is the best candidate based on their chance of survival.
“We told them we didn’t want to be burdened with the decision making.”
The Wagners, who have five biological children of their own, plus two other adopted children, adopted the twins from Vietnam when they were 18-months-old. Already suffering from the genetic liver disease when the Wagners picked them up from the orphanage, the twins were in appallingly bad shape for their age.
“When we saw them at the orphanage we were shocked, really. They were 9 pounds at 18 months. So we left the orphanage that day and went to buy two little containers with dragonflies on them and that’s what we were going to lay their ashes in if they didn’t make it.”
Now, at three, the girls are doing much better, despite being developmentally delayed by their poor health and impoverished infancy in a Vietnamese orphanage. The girls play, laugh, and live like any other three-year-old girls.
But the disease is taking its toll. Unlike other three-year-old girls, they have feeding tubes sticking out of their stomachs (the liver disease interferes with digestion). They itch constantly, morning, noon, and night.
“There’s blood in the bed in the morning from scratching. There’s no way they can concentrate. It rules their life.”
Despite their heartbreaking story, the girls’ parents say they would do it all over again.
“We look back and we have no regrets. We would travel this path all over again. They have taught us openness, they have taught our children sharing and openness. It’s been nothing but a wonderful mess.”
The family is appealing for help in finding a donor for the twin who doesn’t receive tissue from her father; they have set up a Facebook page telling their story, and explaining the requirements of a potential, second liver donor.
[Image courtesy of: CTV News]