Setting an example

11-year-old's strong recovery serves as inspiration for others

GV/ANJoey Parrish, 11, left, watches and helps Aiden Quigley,1, tinker on his drum set at the Parrish residence Thursday, Apr. 28, 2005. Both boys were both born with Biliary Atresia that require a liver transplant to survive. A transplant survivor, Joey Parrish, offers living hope to the Quigly family, who await their son's transplant. ---View Photo Ronda Churchill GV/ANJoey Parrish, 11, shows off his "Mercedes Symbol," which is the scar he has due to surgeries and a new liver. Parrish says that he jokes with kids sometimes saying that it is a shark bite.---View Photo Ronda Churchill

At first glance Henderson resident Joey Parrish looks like any average 11-year-old. He plays the drums and excels at baseball as a left-handed pitcher, but the silver "6" that hangs from a chain around his neck and the scar across his abdomen -- it looks like a Mercedes-Benz symbol without the circular border -- offer clues that his eleven years have been in no way average.

Nearly six years ago, in August 1999, Joey wore his good luck sock, an old Christmas sock with a snowman on it and a hole in the toe, into surgery at UCLA. At the time Joey was six years old -- six is his favorite number, as evidenced by the necklace -- and he was at UCLA for a life-saving liver transplant. After the operation, Joey and his parents, Kit and Chris Parrish, stayed at UCLA for three months while he recoered.

According to Kit Parrish, the recovery changed most aspects of Joey's life. Before the transplant, Joey took 46 pills each day. His mother said now he takes three. He also slept through the night for the first time and played sports without wearing a special pad his father fashioned from a soccer shinguard to protect his abdomen.

Though Joey's transplant was a success and he now leads the life of a normal, healthy sixth-grader, Aidan Quigley serves as a living reminder of the struggles the family went through for more than six years.

Both Joey and Aidan were born with a condition called biliary atresia, which causes obstruction of the bile ducts in the liver. This prevents bile from flowing out of the liver, and instead it backs up, eventually causing cirrhosis. Biliary atresia is an aggressive disease with no cure; a liver transplant is the only thing that will save the lives of those who suffer from it.

Roughly one in 15,000 live births will have biliary atresia, Parrish said. Though the cause is not known, doctors have speculated that the disease is caused by a virus that attacks either while the child is still in the womb or shortly after birth.

The Parrish family met Aidan and his parents through Dr. Howard Baron, the Las Vegas-based pediatric gastroenterologist who is both boys' specialist. After Kit Parrish was told about Aidan, she invited his family to meet Joey in the hopes that seeing Joey's progress would help the Quigley family through the process of waiting for a transplant.

Joey was diagnosed with the condition at 8 weeks old and underwent a Kasai procedure, a surgical draining procedure designed to buy biliary atresia patients some time until they get older and bigger, when a transplant operation is easier.

Like Joey, Aidan has had a Kasai procedure and will need a liver transplant to survive, though Aidan's Kasai procedure hasn't been as effective as Joey's was, meaning he will need his transplant sooner than Joey did.

Though he's not yet 2 years old, Aidan has already been on the waiting list for a liver for nearly one year.

The most obvious external symptoms of the disease are swelling of the liver, which causes the stomach to appear very bloated, and jaundice. Dale Quigley estimated that his son's liver is probably about three times the size of a normal liver.

Kids with biliary atresia also have a hard time eating and breathing normally because their oversized liver crowds the rest of their organs, and they often suffer from itching caused by jaundice. Quigley said Aidan also has to take a special formula through a feeding tube, because his illness was preventing his body from extracting the nutrients he needed from regular food, and Aidan was growing malnourished.

Because it is possible to do a liver transplant from a living donor -- the liver is capable of regenerating itself and will grow back to normal size in both donor and recipient -- the Parrishes and Aidan's mom, Tina Quigley, tried to act as donors for their sons. But in all cases, complications made that impossible. However, if a matching adult liver not from a living donation became available, it would be possible to use part of the liver for Aidan, and the rest for an adult.

"It's so hard for a parent," Dale Quigley said. "We're at the mercy of the system. Aidan's place on the list all depends on how many others are waiting for a liver and how sick they are. You usually end up waiting until they are on their deathbed before they move up the list.

"Aidan probably won't get a liver while he's still up and lively. He'll be on his deathbed at UCLA, and a lot of parents say that's the worst part. You're just waiting and it's out of your hands. Your child is dying and you can't do anything."

Soon after being put on the transplant list in April of 1999, the Parrishes got the first call from UCLA telling them they had a liver for Joey.

"We were surprised. We thought we would have to wait at least six months or a year," Kit Parrish said. "So we grabbed our bags and left for UCLA at 1 a.m., and as we got there, they paged us to say not to come, the organ wasn't a match. We headed to Denny's for breakfast, then turned around and came back home."

Not long after that, the family got another 1 a.m. call, and again left for UCLA, only to find out that the organ was not a match. Again, the family went to breakfast then headed home.

"The third time we got a call, Joey asked if we were going to Denny's again," Parrish said. "But the third time was a good match. The donor was close to Joey's age, and usually the transplant procedure takes about eight hours.

"When the doctors came out after six, we were heartbroken, but they said the surgery was over so quickly because it had gone so well. Joey did very well right after the surgery. He was walking within four days."

However, about two weeks after the transplant Joey suffered a major rejection, and doctors feared he would need another transplant. His doctors were eventually able to help him with steroids and other medications rather than seeking a second transplant, but Joey developed diabetes and high blood pressure, and he suffered a 45-minute grand mal seizure.

One year after the transplant, Joey suffered a second rejection and spent another month in the hospital at UCLA. Again, he was able to improve with medication rather than another transplant, and since then hasn't had any major complications.

Since the transplant, Joey has been active in speaking about organ donation, and regularly speaks to a variety of different groups, from school classes to church groups.

His favorite audiences are made up of other kids.

"I talk about how one person's organ donation can save 50 people," he said. "And how helpful donations can be to other people on the list for organs."

Joey also goes to the transplant area at UCLA when he goes in for check-ups every two to three months and talks to kids waiting for organs.

Parrish said she thinks his visits help those kids, but she thinks they help the parents even more.

"Seeing him now, seeing how well he's doing and the normal life he can lead gives hope to other kids waiting on organ transplants," his mother said. "But they take very good care of the kids there, and I think seeing him does even more for the other parents. It gives them hope that their own children will survive and be able to live normal lives after a transplant."

According to the Nevada Donor Network, about 17 people die each day while waiting for an organ, and only about 1 percent of people actually become organ donors.

"I was scared and tense before the transplant surgery," Joey said. "I couldn't walk up a flight of stairs without running out of breath and I had to eat standing up.

"Be an organ donor. It helps so many people. Once you have it on your license, or you sign the card, you'll feel better because you can save lives. If you were in an accident or something, you could save 50 other people. It's worth it."

Though the Parrish and Quigley families have and will depend on organ donations to save their children, they acknowledged that waiting for an organ is hard for more than one reason.

"When you do finally get that organ, it's bittersweet," Parrish said. "You're so happy your child is going to get the transplant they need, but you know what had to happen you know for your child to survive, what had to happen to someone else's loved one."

Joey's parents said addressing misconceptions about organ donation is important to them.

"You can't take them with you," Chris Parrish said. "It's a waste not to donate. There is no reason not to.

"People have misconceptions that their religion won't allow organ donation, or that doctors won't try to save a donor ... None of that is true, and by donating you might save someone else."

For now, Joey will continue to speak publicly about the need for more organ donors, and the Quigley family will continue waiting for the liver that could save Aidan's life. If they are lucky, one day Aidan also will also serve as an example of successful transplant surgery, and will offer hope to those in similar situations.

"It's important to let people know that there's a real need," Dale Quigley said. "Kids die every day because there aren't enough organs, and it's so sad to see. You don't think about it until it happens to your family.

"Think about organ donation before you're in total despair over losing a loved one. Make the decision with family beforehand, and let everyone know what you want."

For more information about the Nevada Donor Network or becoming an organ donor, visit www.nvdonor.org.