Kingston’s liver transplant twins are off to school
Siblings beginning to thrive after liver surgery that saved their lives
Little Binh and Phuoc Wagner hopped onto a school van recently on their way to kindergarten for the first time.
Their parents, Johanne and Michael, couldn’t get over the normalcy of the situation.
At this time last year, there were some thoughts, however fleeting, that the twin girls from Kingston, Ont., might never make it to school. They had just been placed on a transplant waiting list for new livers because of the effects of Alagille syndrome, a rare genetic disorder that affects vital organs.
Without new livers, the girls would die.
Michael was willing to donate part of his liver, but he couldn’t give to both girls. And he wasn’t sure if he’d be a match for either child. So the family went public, their story capturing the world’s hearts.
It turns out Michael was a match, and he let doctors choose which daughter would get his liver. The other would have to wait.
Doctors chose Phuoc and performed surgery in February, giving her part of Michael’s liver. Then they waited. Two months later they found an anonymous donor.
Life was chaotic. Now it’s calmer, as calm as it can be for a family with nine children.
“It was quite normal, almost anticlimactic, but this is the way it’s going to be and we don’t have to get stressed out as much anymore,” Michael Wagner says.
Life has completely changed for the Wagners and their nine children. The twins, who are developmentally delayed because of the damage their failing livers inflicted upon their bodies, are reaching new milestones daily.
The feeding tubes have been removed from their bellies. Their medications have been drastically reduced. They can talk. They can dress themselves. And they’ve finally moved out of the cribs into their parents’ bedroom into “biggirl beds” in their own room.
Just a few months ago, however, the situation was drastically different.
Binh struggled after receiving the transplant surgery. She ended up in intensive care for a week. Her diaphragm was partially paralyzed and she needed machines to breathe. She had a seizure.
And white blood cells from her new liver caused an immune reaction against her own red blood cells.
After several transfusions, meantime, Binh got better.
Nonetheless, the girls aren’t totally out of the woods. They’re vulnerable to disease and infection because of the immunosuppression drugs they’ll be on for the rest of the lives thanks to the new livers in their bodies.
They have to watch what they eat. No processed lunch meats because of fears of listeriosis. No leafy greens because of e-coli fears.
With part of Michael’s liver in Phuoc, she may have picked up his allergy to shrimp.
Those concerns didn’t stop them from enjoying their first day. They laughed and played and ate their entire lunch.
It was just a normal day.