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A New Liver, A New Life

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By GEORGE WILKENS

The Tampa Tribune

Published: June 4, 2008

PLANT CITY - Tom and Krystal Wilder were almost to Gainesville when they got the call from nearby Shands Children's Hospital at the University of Florida: A potential liver donor had been found for their 4-year-old son, Nate.

"It was the biggest shock of my life," Krystal said. "We didn't know whether to laugh or cry."

Nate, en route to Shands early that January morning for yet another checkup, quickly grasped the gravity of his parents' emotional response to the cell phone call: "They got me a liver?"

"He knew who was calling, he knew this was it, and he wasn't scared at all," his mother said.

The journey that ultimately led Nate to Shands began two weeks after his Oct. 15, 2003, birth - a seemingly healthy child.

Learning to walk and talk and other milestones were overshadowed by an endless battery of medical tests, ambulance trips, emergency procedures, hospital stays, surgery, repeated transfusions, mystery and, of course, almost unbearable parental anxiety.

It took exploratory surgery at Tampa's St. Joseph's Children's Hospital to confirm that Nate, then 5 weeks old, suffered from a rare life-threatening disease, biliary artesia, the congenital absence or closure of ducts that drain bile secreted by the liver.

"I couldn't even pronounce it," his mother said of the progressive inflammatory process that affects only newborns. Occurring in one in about 15,000 births, the disease is not hereditary, contagious or preventable, and the cause is unknown, research says.

Physicians ordered an immediate hepatoportojejunostomy, dubbed the Kasai procedure for the Japanese surgeon who developed it in 1951.

"This disease has a lot of big words associated with it," said Krystal, who was 19 when she gave birth to Nate, her first of three children. "The Internet was my friend" in researching biliary artesia, she said.

The Kasai procedure creates a surgical bypass for the liver bile, a measure that proves successful in about 80 percent of cases involving infants, according to the Children's Liver Association for Support Services.

Nate developed colangitis after the Kasai procedure and remained hospitalized for a month, discharged on Christmas Eve.

One morning three months later, Nate was unresponsive when his parents tried to wake him. They called 911. Quickly assessing the seriousness of the situation, Plant City Fire Rescue officers summoned a medical helicopter to carry Nate to Tampa General Hospital, where a trauma team awaited.

In a coma, Nate was placed on life support by physicians who determined there was severe bleeding in his skull requiring immediate surgery to relieve. "They didn't even expect him to live," Krystal said.

Nate, who opened his eyes a week later, was released after nearly a month at Tampa General.

With it obvious the Kasai procedure would not work for Nate, physicians registered him in July 2004 with United Network for Organ Sharing, a Richmond, Va., agency maintaining a centralized computer network linking all procurement organizations and transplant centers.

Nate's name was removed six months later. "He was doing too good," his mother said, prompting physicians to delay transplant plans as he prospered and became a suitable recipient for a larger liver, more readily available because organ donations are more common among older pediatric donors.

In March 2007, however, Nate's condition took an unexpected turn for the worse, and he again exhibited symptoms of internal bleeding. At Tampa General's pediatric intensive-care unit an endoscope detected a stomach ulcer. Five days and four transfusions later, Nate returned home.

In November, recurring internal bleeding required a week at TGH and multiple transfusions. Before daybreak on the day after Nate was discharged, continued bleeding necessitated he be airlifted to Shands.

Nate would spend three weeks at Shands, undergoing five endoscopies, nine transfusions and a five-hour operation to place a shunt in his liver.

Recognizing the recurring medical problems, Shands pediatric gastroenterologist Regino Gonzalez-Peralta upgraded the urgency of Nate receiving a new liver and returned him to the United Network for Organ Sharing transplant list Nov. 30.

"Dr. Gonzalez saved his life by making the decision to put him on the list and by having enough compassion to end his misery," Krystal said.

The call the Wilders could only pray they would receive came sooner than they could have imagined, after only one month on the list.

"They called when we were 10 minutes from Gainesville," en route for Nate's 8:30 a.m. checkup, Krystal said.

It was 11 p.m. before the Plant City couple received confirmation the donor liver was a suitable match. The 4 1/2 -hour transplantation would begin as soon as Nate was anesthetized.

Not wanting to venture far, the Wilders napped for two nights in their minivan in the Shands parking garage.

"Actually, it went very smoothly," Krystal said of the transplant surgery . "His other organs were not damaged," as with many other end-stage liver disease patients, she said. "He was otherwise perfectly healthy."

Today, Nate is in Trapnell Elementary's preschool program for children with developmental delays.

"It's been rough. It's a lot to deal with," coping with medical emergencies, caring for Nate's brothers and coping with financial struggles, said the boys' 31-year-old dad, a Tampa native and Army veteran.

Both sets of grandparents and Tom's aunt in Kentucky shared in caring for Wyatt, 3, and Jeremy, 1, during times of crisis, but being at Nate's side often caused Tom to miss his night shift at FedEx in Tampa, where he has been a mechanic for five years.

"I just thank God for giving us another try with him, because he definitely has a purpose for the little guy," Tom said.

Nate takes eight prescription medications daily, plus others periodically, all provided by Medicaid. "I can't imagine trying to pay out of pocket for that," his mother said.

She said she hopes Nate can eventually be weaned off medication. For now, they work on keeping him healthy with a mineral-rich, high-protein diet to help add weight and reach the 5-foot-8-inch height physicians predict he will achieve.

To reduce risk of infection, the family had to replace their carpeting with wooden floors, clean the air-conditioning system, disinfect toys and other items and add water filtration to their private well.

Nate wears a surgical mask for the bus ride to and from Trapnell Elementary, while in class and at other public places.

When classmates or others ask why he wears the white mask, Nate said, "I tell them I'm special."

At the family's doublewide mobile home on Topaz Lane, Nate enjoys watching the cartoon "Go, Diego, Go" and playing in the fenced yard.

"I don't have to use it when I go outside" at home, Nate said of the mask he wastes no time removing upon greeting his parents at the bus stop.

The life-threatening ordeal has been a nightmare for Nate and his family.

"You just want to close your eyes and wake up," his mother said. "It's something you don't want to believe."

But she insists on looking at the positive side. "He would not be the kid he is today had he been born normal and healthy," Krystal said of Nate, a laid-back and loving child.

"Everyone loves him the way he is. And he's a good kid."

Reporter George Wilkens can be reached at (813) 865-4433 or gwilkens@tampatrib.com.

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