Pediatric Transplant: For the Children
MADISON - Every day, Josh and Shelly Andrews wait. They wait for a phone call. The call that will inform them that a liver donor for 9-month-old William has been found.
When William was two months old, this Madison-based family discovered their son had developed biliary atresia, the main cause of liver failure among newborns and children. In youngsters with biliary atresia, the duct that allows the liver to pass bile into the small intestine is damaged or absent. Jaundice is often the first sign that something is wrong.
In April, William was added to the national organ donor waiting list. Nearly three months later, he's still there, caught in the same Catch-22 that traps so many children with liver disease: They're not yet sick enough to rocket to the top of the waiting list, yet not well enough to function normally.
Doctors know that most children with William's condition begin deteriorating at or around a year of age. It's at that point that, his parents hope, a donor will become available to him.
"It's been tough—you wish you could trade places with him," says Josh Andrews of his family's situation.
Shelly Andrews agrees. "Having to watch him get worse before he can better is agonizing."
Normal life isn't easy. William is on seven different medications to maintain the flow of bile from his liver. Recently, he had to return to American Family Children's Hospital to receive treatment for esophageal varices, a complication that bumped his name up on the national waiting list.
His parents say William has a loving disposition and a laugh that sounds like a playful dolphin, but his condition has slowed his development and made it difficult for him to gain weight. Even once he receives a liver transplant, William's road will be a challenging one. He'll face a lifelong regimen of antirejection drugs—but he'll finally be free of the disease that has, so far, defined his short life.
When the time comes, William will receive his transplant at UW Hospital and Clinics. UW Hospital's transplant program has been performing pediatric liver transplants since the 1980s. Each year, Dr. Tony D'Alessandro and his surgical team perform between 10 and 12 pediatric organ transplants.
Their results are among the best in the nation. According to January 2008 data released by the United Network of Organ Sharing, UW Hospital's one-month and one-year survival rates for pediatric liver transplant patients were at 100 percent, surpassing the national average by as much as 10 percent.
Many of the organs involved in these transplants, come from living donors, says Dr. D'Alessandro, because the liver is the only organ that can have a small portion cut off and regenerate.
Nationwide, pediatric transplants involving adult donors are slightly less successful that those involving child donors. It used to be that pediatric patients had only one treatment option—the Kasai procedure, a surgery in which physicians create an opening for bile to drain from the liver.
"Before the advent of liver transplant, these children used to die," says Dr. D'Alessandro, who serves as the director of the liver transplant program at UW Hospital and Clinics. "Now, they can have a normal lifespan and quality of life."
But only if enough donor organs can be found to help them. One of the things that puzzles transplant surgeons—and everyone working in transplant—is that awareness of the need for pediatric organs often lags behind awareness of the need for adult organs.
"Children are one of the most satisfactory groups to help," says Dr. D'Alessandro. "And when they're made aware, people are much more sympathetic to a child's needs."
UW's Organ Procurement Organization works tirelessly to educate the public about the need for donor organs. Meanwhile, families like the Andrews wait.
"It's hard enough to knowing our little boy's going to need a major surgery. It's another thing altogether to not know when it's going to happen," says Josh Andrews.
"We're anxious to move forward," says Shelley.
For more information about pediatric organ donation and organ transplant at UW Hospital and Clinics, contact (608) 263-1384 or visit uwhealth.org/transplant. For more information about organ donaton or how to get your donor dot, visit uwhcopo.org.
Date published: 6/26/2008
Date Published: 11/26/2008