De Soto couple hoping son’s impending liver transplant puts end to difficult year
There are no routine phone calls these days to Stacy and Randy Zerr's home. Each ring of the phone is greeted with a pit-of-the-stomach anxiety mixed with the hope that the final chapter is starting in the family's 10-month ordeal.
"It's our hope that it will be the light at the end of the tunnel," Randy said. "There's a lot of tunnels, but that would be a major one."
The phone call will spur the couple to grab already-packed bags as they leave for NewCentury Air Center to catch a St. Louis-bound chartered jet. There, their 10-month-old son Tanner will undergo a life-saving liver transplant.
The urgency with which they greet every phone call is far removed from the couple's quiet anticipation of a year ago when they were experiencing what was a very normal pregnancy. At that time, the Zerrs' biggest concern was one they shared with many of their Waverly Road neighbors -- the change to their semi-rural area should the Arbor Ridge subdivision be approved to the west.
"It was not a difficult pregnancy," Stacy said. "The last week, there were a few complications. Then, they were just here.
"It went from a perfect pregnancy to a very early delivery."
Tanner and his sister, Morgan, were born April 20, 2004, in the 27th week of their term, weighing just 2 pounds 3 ounces. The two spent the next 50-plus days in adjoining cribs of Overland Park Regional Medical Center's neonatal intensive care unit, struggling to gain the weight and strength they needed to survive.
Soon after her twins' birth, Stacy's parents visited from Iowa. On their way back, "lightning struck again," Stacy said.
"They were involved in a head-on collision only 15 minutes from home," she said. "Mom is a paraplegic, and Dad is dealing with his injuries.
"It's been a very tough year."
With Stacy's parents hospitalized in Iowa, her twin fighters gradually improved, until they were finally able to share a crib.
But that lasted only a few days before Tanner began to display symptoms of biliary atresia. Unrelated to his preliminary birth, the condition, which affects 1 in every 16,000 infants, attacks the bile ducts, causing scarring and damage to the liver.
So just before Morgan came home 55 days after the twin's birth, Tanner was moved to the Kansas University Medical Center for another 26 days. He did get to come home in July before returning to the hospital for a surgery to connect his liver's bile ducts to his intestine.
"It works on 10 to 15 percent of kids," Stacy said. "It seemed to work for about a month, and then his labs started to elevate again."
The operation's failure necessitated a transplant.
Stretched out on the Zerr's living room carpet in pajamas, Tanner is somewhat smaller than Morgan. His skin has a yellow tint that contrasts with the rosy complexion of his now healthy sister. But both smile, fuss and gurgle as they search out the other's hand, a gesture their parents said the twins always made when placed side by side.
"He doesn't act sick," Stacy said. "He sleeps a little more than her. That's what the liver does -- gives you energy."
The doctors in the St. Louis hospital who will perform the transplant want to take advantage of Tanner's relatively good health to do the operation sometime in the next six weeks.
Tanner was second on a list of adolescents in a six-state area slated for a liver transplant, Stacy said. The average wait for a child in that position was 22 days, she said.
"We're told most calls come at night for some reason," she said. "We're waiting for that middle-of-the night phone call."
Should a cadaver liver not be available in the six-week timeframe, a portion of a family member's liver would be transplanted. As of last week, the most likely candidate was Randy's mother, Loretta Zerr.
That a portion of a liver can be transplanted from a live donor into their son and that the livers of both patients will grow into fully functioning organs was one of the many medical lessons the Zerrs learned the last year.
"First we learned about the premature birth stuff; then we learned about the liver stuff," Stacy said. "We're still learning."
One very meaningful lesson was of the hope organ donors gave to desperate parents and patients, they said.
"We always thought with people who need liver transplants, especially, were people who abused their bodies their whole lives," Stacy said. "There's a lot of reasons someone could need a transplant, even babies who haven't done anything to their bodies."
A cadaver liver was preferred for transplant because it wouldn't put a living person at risk, but the Zerrs said they were aware of the sacrifice it would represent.
"That means someone else's child had to die for him to live," Randy said. "That's a big pill to swallow. You have to be tremendously thankful for that gift."
Family friend Toni Caldwell said the Zerrs had reluctantly agreed to seek help with the bills their insurance won't cover. The transplant will require Tanner to spend two to three months in the hospital and cost $250,000. The couple, both engineers, planned to find Stacy temporary housing in St. Louis so she can be nearby during Tanner's hospitalization, an added expense during a time she is forced to miss work.
After the transplant, Tanner's daily routine will include taking medication to prevent his body from rejecting the new liver. That will cost about $10,000 a year, Caldwell said.
Collection jars would be placed around the community for donations, Caldwell said. Donations could also be made to "Tanner's Triumph," a foundation established by the American Liver Foundation at which tax-deductible donations can be made to help with expenses not covered by insurance.
For all their troubles of the last year, the Zerrs said it could have been worse. They watched as nurses closed curtains in the NICU, a sad indication some parents wouldn't be taking their baby home.
With the transplant operation perhaps hours away, the Zerrs said they were looking forward to the life they anticipated before the early births. They are eager to be able to go out as a family for the first time, something they haven't been able to do because of the fear of exposing the fragile infants to bugs and viruses.
"I'm scared but excited at the same time," Stacy said. "It's been such a roller coaster ride.
"It's never easy to see your child go into surgery, because when they go through that door, they're not in your hands. You have to trust them."
Easing the fear was the knowledge the transplant operation had a 95 percent success rate and the confidence they have in their young son's strength.
"He's been a fighter," Randy said. "He's my hero. Both of my kids are my heroes. They can't even say 'I love you Mom and Dad,' but they sure show it."