Doctors prevent woman from donating liver to grandson

Posted: Wednesday, December 26, 2001

ANCHORAGE - Her neighbors were frantically buying their last Christmas presents, decorating the trees, even baking cookies, but Nancy West had other plans to make.

A week shy of Christmas Day, she was on the phone with Dr. Clinton Lillibridge's office in Anchorage. Are you ready, he asked, to fly down to Stanford University in California for some tests? And by the way, can you do it during the weekend?

Things were moving fast but the tests were crucial. West's health wasn't the problem. It's her grandson that needs help.

Just 15, Chris Phillips has a liver that's worn out. His disease is deadly, but a liver transplant could bring a complete cure, Lillibridge said.

Getting that liver isn't easy. Across the nation, 18,600 people are waiting for new livers. About 15 of them are in Alaska, according to Life Alaska, the state's organ donation center. Last year, less than a third of them got the livers they needed.

Chris had been on the liver donor list for a year, and nothing happened. So as the holiday approached, West made a decision. She would give her grandson a unique gift. He needed a liver, and she had one to share.

"He might get a wonderful Christmas present," Lillibridge said, making the preparations last week.

Livers are unique organs; portions of them can be removed from a living donor and implanted. West talked repeatedly with Lillibridge's office, making final arrangements for last-minute tests. The doctor's staff set up the travel plans.

 

So when Nancy got a call Thursday from Lillibridge's office, saying please come in at 4 p.m., she wasn't worried.

When she arrived, the bad news came. For a year now, West had lost excess weight, even undergoing an operation to make her stomach smaller, so she'd be a healthy donor for Chris. Then, when transplant centers questioned her age, saying she was too old to donate, she helped find another center who'd consider her.

But doctors at Stanford University, where the transplant was to be done, said the surgery was too risky, and they wouldn't sacrifice West's health to help Chris.

When Dr. Lillibridge looks at Chris, the teen-ager he sees today is not that same boy he knew 18 months ago.

Chris kept getting sick so he dropped out of seventh grade at Central Middle School last year. He'd like to snowboard or play soccer, but his dad, Vernon Savage, pulled him out of contact sports. His family had seen him slip and bump into things, causing him so much pain that he had to be seen by doctors.

Chris isn't nervous about needing a liver transplant. He's anticipating it, saying it's the one thing that will let him do the things he misses.

Chris' disease, primary sclerosing cholangitis with cirrhosis, is more common in adults than children. Lillibridge has been a pediatric gastroenterologist since 1966 and he's never treated another case of it.

The disease is destroying Chris' bile ducts. Bile is necessary to remove toxins from the liver and the rest of the body. In Chris' body, this isn't happening and toxins are building up in his blood. The liver failure also prevents his body from using all the nutrients it needs, so he's losing weight and becoming weaker.

Now that they know that transplant doctors won't accept West as a donor, West and Lillibridge hope to find another solution.

"We're going to try everything we can," Lillibridge said. He's heard that the new year will bring a change in the donor list, bumping sick children such as Chris closer to the top.

West remembers what she told Chris almost two years ago, when he first found out how bad things were. Chris had two questions. He wanted to know if he could make his other friends sick. Grandma assured him that wasn't going to happen.

Chris asked a tougher question: Am I going to die?

No, she told him, because we're trying to get you a liver.

Distributed by The Associated Press.



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