A three-year-old girl from Kingston, Ont., is back home after spending a month in hospital following a liver transplant surgery, but her ailing twin sister is still waiting for a liver donor, the girls’ father said Monday.
Michael Wagner said Phuoc left Toronto’s SickKids hospital on Friday — a month after receiving a part of her father’s liver — and is now spending time with her family, playing like a healthy little girl.
Phuoc and her twin sister Binh suffer from Alagille syndrome, a genetic disorder that affects vital organs and can be fatal.
Wagner said Phuoc was so excited to go back home that by the time he pulled up in the driveway, she yelled “Mama!” repeatedly and tore out her car seat.
Now the family is back into their routine, he said, and the twins are back to having baths together.
“It’s like it never happened,” Wagner said of his daughter’s surgery.
As great as the reunion was, it has also been bittersweet, Wagner said.
“It’s a little sad to see the two of them next to each other and one suffering the symptoms of Alagille and liver disease, and the other not,” he said.
“But you know what? Her turn will come.”
It took Wagner about 10 days to recover in the Toronto General Hospital after surgeons removed about 15 per cent of his liver.
Phuoc struggled after surgery when she contracted the stomach flu, her father said. She threw up repeatedly and had a serious bout of diarrhea, which threw off her medications and slowed her recovery.
The most difficult part, Wagner said, was the isolation designed to prevent the spread of infection.
The changes in his daughter are startling, Wagner said. Her complexion is no longer a yellow hue.
“You can see the white of her eyes — we’ve never seen them,” Wagner said. The constant scratching has stopped.
“Even her teeth are starting to go white. It was almost instantaneous, like someone flipped a switch.”
Phuoc sleeps soundly, Wagner said.
“I’ve never seen her sleep relaxed, always a little bit tense,” he said. “Now she is just at peace.”
Meanwhile, her twin sister, Binh, waits for a donor. She still scratches and sleeps fitfully.
After Phuoc’s surgery last month, Dr. Gary Levy, who runs the liver donor program at Toronto General Hospital, said they had identified a handful of candidates for Binh. But little information has been shared with the family since that time.
“I’m sure they have someone, but they don’t tell us anything and I tell you, I’ve asked them all. And they’re just not going to tell me until it’s 100 per cent a go,” Wagner said.
A spokeswoman for Toronto General Hospital said last week that about 500 potential liver donors have come forward offering to help Binh.
Wagner said that with both him and Phuoc recovering, the family will be in a much better position to care for Binh when her surgery comes.
In the meantime, life for the Wagners, who have nine children, goes on.
On Monday they revelled in the doldrums of paperwork — they filled out school applications for the twins who are set to start kindergarten in the fall.