Casey Taylor - Biliary Atresia

casey taylor LDLT

Dad Saves His Daughter with Liver Donation

Casey and Megan Taylor of Sarasota, Florida, may be twins, but they are quite different. Megan is the more serious of the pair, says their dad Mike.

“Casey is the comedienne. She’s always looking for a good time and a laugh. She gets out of bed smiling every day.”

Casey has much to smile about. In 2009, when she was only nine months old, had a successful living-donor liver transplant at UPMC Children’s Hospital of Pittsburgh. Casey's dad was her donor.

“Fortunately, my wife Maureen and I were both matches for Casey,” says Mike. “That’s not the case for everyone.”

With more than 15,000 people on the liver transplant waiting list, living-donor liver transplantation is a life-saving procedure.

The whole experience has helped Mike to put things in perspective and have a greater appreciation for life.

“The satisfaction you get from helping save someone’s life outweighs everything else,” says Mike. “I know a living donor transplant is a much-needed option for patients on the waiting list. So, I’d do it again in a heartbeat.”

Maureen now talks openly about being a living donor in the future.

The Challenge: A Rare Liver Disease

The twins’ birth in September 2008 was a joyful event for the Taylor family. But, their happiness didn't last long when Casey got sick.

“Within two weeks, I knew there was something wrong with Casey, but our pediatrician at the time dismissed my concerns,” said Maureen.

She found a new doctor that found Casey had biliary atresia, a rare disease of the liver and bile ducts.

Although the disease leads to liver failure, the Kasai procedure (also known as a Roux-en-Y) can re-establish bile flow to the liver.

The Path to UPMC for the Kasai Procedure and a Liver Transplant

“When we learned that most children with biliary atresia need a liver transplant, I started to research hospitals,” says Mike. “Although we live in Florida, Maureen and I are originally from Philadelphia and have family nearby.”

“It probably would have been easier to go there, but I had a gut feeling about UPMC,” says Mike.

Mike recalls the day he called Children's Hospital. He was spending weeks trying to find a hospital that would perform the Kasai procedure.

“It was a Wednesday,” he recalls. “I’m sure I was crying when they called. Doctors said, ‘If you’re willing to commit, we will get you scheduled for the Kasai.’”

The next day, the transplant team received Casey’s liver biopsy results and performed the Kasai four days later.

While a Kasai procedure doesn’t cure biliary atresia, it delays the immediate need for a liver transplant. This would give Casey time to get stronger before surgery.

“Both Maureen and I had approval to be Casey’s donor,” explains Mike.

As a general contractor, Mike had more flexibility in taking time off work to stay in Pittsburgh with Casey following the surgery.

“Maureen’s job provides our family health insurance. So, we decided that I’d stay in Pittsburgh with Casey so she could go back to work,” says Mike.

In May 2009, Casey had a liver transplant at Children’s and Mike’s surgery took place at UPMC Montefiore. Maureen watched and worried about both.

“I had the easy part because I slept through everything,” says Mike.

Both surgeries went very well. Mike says he had no major issues.

“I’m healthier now than I ever was. I’m more conscious about what I put into my body. Because I know how important it is to take care of it,” says Mike.

The Results: A Young Child Who's Grateful for Life

Once released from the hospital and allowed to travel, Mike flew home to spend time with their three other children.

Maureen stayed with Casey and made living arrangements close to Children’s where Mike and Casey would recover.

After Mike returned to Pittsburgh, he was Casey's main caregiver. Maureen headed back to Florida for work and to care for the rest of their family.

Mike and Casey returned home to Florida in August 2009.

“We got great support from everyone at Children’s, especially our transplant coordinator,” says Mike.

The doctors were fantastic, he says.

“But Dr. Soltys — her transplant surgeon — is definitely Casey’s hero, and ours too.”

“When I first met Dr. Soltys, I thought ‘Wow he’s so young’,” recalls Maureen. “But he was so confident and reassuring. ‘We’re going to take very good care of your daughter,’ he said — and that’s what he did.”

Today, Casey is an active second grader who enjoys softball and playing the piano.

She’s very into fashion, loves to draw, and is an avid reader.

“She’s the kindest, most gentle kid — she’s always happy and she has a great appreciation for life,” says Maureen.

The Taylors have high praise for the entire team.

“As parents, we would have done anything for our daughter,” says Mike. “To the team at Children’s, every child is an important child, not just a patient.”

“Children’s Hospital welcomed us with open arms,” adds Maureen. “I think they are the best in the world, and I thank God that he led us to them.”

“They took great care of Casey and us,” adds Mike. “I can’t praise them enough, and I hope they know how much we love them.”

Learn more about helping a child on the liver transplant waiting list.