Child Awaits Word On Plans For Fifth Liver Transplant

By Marci Elliott

Nathan Wallace.

He's had four of them. And he's waiting for his fifth.

Nathan, son of Stefani and Marty Wallace of Chandler, Ariz., and grandson of Carolyn and Jerry Bliss of Naples, is at Jackson Memorial Hospital in Miami, where his family hopes to hear - soon - that another liver is available for him.

"We thought he might be getting better, but he started having unusual complications again," said Nathan's mom, visiting at her parents' home in Naples last week.

Nathan was born with a condition called "biliary atresia," in which the bile ducts don't completely form and the small intestines don't connect with the biliary system. It's a rare disease that occurs about once in 15,000 births, physicians say.

Nathan's four short years have been spent in and out of hospitals, taking medications and being monitored on machines, making friends with nurses, doctors and hospital staffs.

"He doesn't know his ABCs - but he can recite all the meds and machines," Stefani Wallace said. "We're working on the ABCs, but he's just not interested. He's more interested in what his monitor does."

Nathan's big sister, Morgan, 5, said she misses Nathan, sometimes.

"I have a lot of friends," she said, taking a break from watching television at her grandparents' home. "Nathan doesn't have any."

That's because he's spent his whole life around doctors and nurses, Stefani said. He's made friends with them from Arizona to Naples.

Stefani and Morgan stayed with the Blisses for a few days, then went back to Miami to rejoin Nathan and his dad, who remained at Jackson Memorial. Nathan's face is puffy and swollen from his medications, but other than that, you wouldn't think anything was wrong with him, said Marty Wallace, "...unless you knew."

The family stays at different places in Miami, and Stefani and Marty take turns staying in the hospital's Pediatric Transplant Unit with Nathan. They have insurance through Marty's job, but the expenses for travel, lodging and other costs associated with Nathan's condition have skyrocketed.

They're waiting to hear from the United Network of Organ Sharing, UNOS, a nonprofit organization that controls a nationwide list of organ donors. A liver became available last week, Stefani Wallace said, but another recipient was higher on the list than Nathan.

"Every time an organ is donated, another child has to die," Stefani said, teary-eyed. "It's bittersweet. While we want Nathan to live, we don't want someone else to have to lose their child. It's awful. Three children and an adult have had to die for Nathan. We can't choose - God's plan is God's plan."

The Wallaces have become close with another Collier County family, Monica and Mike Buddemeyer of Marco Island, whose daughter, Amanda, recently received a multi-organ transplant at Jackson Memorial. Amanda's room is near Nathan's, and Monica Buddemeyer took photos of Nathan and his dad to go with this story.

Jackson Memorial Hospital is the reason the Wallaces keep taking Nathan back to Miami.

"It's one of the top three pediatric transplant hospitals in the U.S.," said Monica Gonzalez, a registered nurse and pediatric transplant coordinator who knows Nathan and his family well. There are many hospitals in the country that do the transplants, but Jackson is among the three best, which include hospitals in Pittsburgh and Nebraska, she said.

"I've known Nathan since his first transplant, when he got part of his mother's liver," Gonzalez said. "His condition currently is stable, but there's no telling when another liver will be available. It's a very different situation with organ transplants from other surgeries. It takes the loss of one life to save another."

Gonzalez knows Amanda and the Buddemeyers, too.

"Amanda's stable, but it's been rough," she said. "It's been a very long road for them."

Marty Wallace said his insurance played a role in the selection of Jackson Memorial. An officer with the Phoenix Police Department, he has received support from his supervisors and colleagues, who have gone so far as to give up their own paid time off so Marty can spend as much time as he needs with Nathan and the family.

"The insurance has been pretty good up to now, but they don't want to cover the fifth transplant," he said. "We're trying to work that problem out with them."

He said he and Stefani have considered moving back to Naples, where Stefani grew up and graduated from Naples High School, but that he'd have a hard time finding a job where the people have been as good as the ones at Phoenix police.

"We've been really lucky," Marty Wallace said. "Anything we've wanted or needed, they've been there. It's just overwhelming. I have never, ever seen people help so much. And Naples is so expensive."

Wallace's insurance company has contracts with pediatric transplant providers in Tucson, North Carolina, Chicago, St. Louis, Virginia and Miami.

"We were all set to go to Stanford, Calif., but their contract expired," Wallace said. "Miami worked out for us, and it's better - not only because of its reputation, but because it's closer to Stefani's family."

Nathan, born Feb. 17, 1999, had his first transplant when he was 7 months old. His surgeon, Dr. Tomoaki Kato, an assistant professor at the University of Miami's post-transplant program, transplanted a portion of Stefani's liver into Nathan. At that time, Kato said Nathan may not need another transplant.

But he did. Three more.

Stefani Wallace said the surgery was "terribly painful," but that she's healed and bounced back. But she's concerned about her little boy, who just can't get well.

"The disease progresses so rapidly," she said. "When Nathan was 3 months old, he had to have surgery to connect his intestines to a functioning bile duct. It was controversial at the time, but Dr. Kato was one of the surgeons who believed it was necessary."

After that, and after the transplant of Stefani's partial liver, Nathan went from one complication to another. The experience kept him from growing and developing normally. He didn't crawl until he was 2, and didn't walk until after he was 2.

After his third transplant, July 9, 2002, Nathan had to learn to walk, talk and eat all over again.

But something's working, because after all he's been through, he's still here, Stefani said.

"Nathan's a fighter. God's given him the strength to keep going," she said. "All this has been so frightening. We were afraid we were going to lose him - more than once."

After the third transplant, Nathan looked good, Stefani said. A day later, he went into complete failure. He had to have half an adult liver at that time - there was no other choice.

"Little by little by little, he got better," Stefani said. "We prayed and prayed and prayed. We contacted every prayer chain you could imagine."

Nathan has had a fourth liver transplant since then. The Wallaces have had to pay $100 co-pays, $50 emergency room co-pays, and $200 a month for Nathan's medications. Marty has had to work two to three jobs to cover his share of the costs and expenses. Some fund raising has helped, including $1,500 the Fraternal Order of Police in Naples raised in September 2000. Jerry Bliss, Nathan's granddad, is a former Naples police officer and his brother was a founder of the FOP.

The Wallaces have been so immersed in Nathan's ordeals that they don't pay much attention to the stress they've been under, too, Stefani said. She had to quit her job as a dispatcher for Phoenix police to take care of Nathan, and to be with Morgan: "We're her parents, too. My daughter needs her mom and dad."

When Stefani is asked how she gets through, she pauses to think of her answer.

"It's God's grace. I'm telling you, it's God's grace," she said. "We've been blessed by the support system we've had from our family, friends, church, neighbors and the Phoenix Police Department. All we can ask is that the prayers continue."

Donations can be made for Nathan Wallace's and his family's expenses to the account of Stefani and Marty Wallace at the First National Bank of Naples.

Copyright © 2003 Naples Daily News.

Published in Naples, Florida.

This article posted March 2, 2003.