Liver transplants give twin Vietnamese adoptees second chance at life
From the moment they picked them up from a Vietnamese orphanage, Michael and Johanne Wagner knew their twin girls stood on the edge of death.
At 18 months old, Binh and Phuoc were both nine pounds at an age most children are topping out at 22 pounds. The twins were so fragile that the Wagners didn’t leave Vietnam without first heading to the market to buy a container that could serve as the girls’ urn.
A rare liver condition was to blame, Canadians doctors would soon discover, and despite offering up their own organs, the family could save only one.
As Johanne Wagner said last January, the couple left it up to doctors to decide that Phuoc would live.
“We told them we didn’t want to be burdened with the decision-making,” she said.
‘Binh received her gift! There are not enough words to thank the amazing and so unselfish donor’
But on Monday, three months after the Wagners’ story prompted 600 people to step forward, the Hospital for Sick Children in Toronto announced that the liver of an anonymous donor had been successfully transplanted into Binh.
“Binh received her gift! There are not enough words to thank the amazing and so unselfish donor,” wrote the family in a Monday message to supporters.
Later that day, Binh, still plugged into IVs and covered with bandages that masked large scars on her chest, was taking her first post-surgery steps.
Binh and Phuoc suffer from Alagille syndrome, a relatively rare disorder that strikes the internal organs of roughly one in every 10,000 births.
In the case of the twins, the disease left them with far fewer bile ducts on their livers than usual, leading to severe problems with fat digestion and vitamin absorption. The girls needed feeding tubes and their skin was so itchy that they bled constantly from scratching. A lifetime of poor nutrition meant that they lagged in physical development. On top of everything, they risked dying at any minute from sudden liver failure.
“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,” Dr. Binita Kamath, who treats the twins, told CBC.
Courtesy of SickKidsThree-year-old twin sisters Phuoc Wagner, left, and Binh Wagner at The Hospital for Sick Children in Toronto on Monday.
Under normal circumstances, the twins would be put on a wait list for a liver from a dead donor. But given the severity of their condition, Binh and Phuoc would likely have died before two matches became available.
As Toronto General Hospital notes in its literature, at any one time there are 200 people in the city awaiting a liver transplant.
Michael was quickly found to be a match, and was scheduled for a donation in February. But with his partial liver donation only able to save one of the girls, the Kingston, Ont., couple went public in January with a plea for strangers to step forward with a second donation.
It was not a simple request. If donors filed the mountains of paperwork and passed all the preliminary screening, they would be in the hospital for five to 10 days and off work for six weeks as the sliced-off portion of their liver grew back.
On top of that, 40% of liver donors suffer post-surgery complications, and as many as one in every 300 donors don’t survive.
“Liver donation is challenging surgery,” notes Toronto General Hospital. “Donor deaths and/or severe complications can occur even when the very best care is provided.” Patients who undergo routine heart bypass surgery, the hospital notes, are more likely to survive going under the knife than a liver donor.
Despite this, as many as 600 anonymous donors faxed in the forms to Toronto’s University Health Network offering to undergo the procedure for Binh.
The effort was buoyed in part when Phuoc rebounded so rapidly after receiving the liver from Michael. An off-colour tinge to her skin and her itching disappeared and she began sleeping through the night.
Binh’s surgery was performed earlier this month, although Toronto General Hospital is not releasing the exact date “or any other possible identifying details.”
The Wagners have seven older children, five of whom are biological and two more who were also adopted from Vietnam.
As of Monday, the family is strictly avoiding any media attention, but they wrote in a statement that they are looking forward to “leading a healthier life now, with both transplants finally behind us.”
National Post, with files from The Canadian Press
Cặp song sinh Việt mắc bệnh hiếm được bố mẹ nuôi Canada cứu
Giây phút nhận nuôi cặp song sinh từ một trại trẻ mồ côi ở Việt Nam, vợ chồng Michael và Johanne Wagner, đã biết hai đứa trẻ đang đứng bên bờ vực của cái chết.
