The Gift of Lives
IT DID NOT MATTER THAT LESLIE Garcia spoke Spanish and Michelle Nuss only English. “We just looked at each other,” says Nuss, “and tears fell. Our little boys were in their operating rooms, and we were feeling the same thing. We were scared, happy, hopeful. We encouraged each other. We held hands and rubbed each other’s back. Now I not only cared for my son, I was praying for Leslie’s too.”
On Oct. 25 the two mothers were given a single solution to a mutual problem. In a rare procedure a liver was divided into two pieces and transplanted into the bodies of their two little boys: Waldo Garcia Jr., 4, and Steven Nuss, 10 months. “This is how you make the most out of the potential organs available,” says Dr. Stephen Dunn, 42, director of the Liver and Kidney Transplant Program at St. Christopher’s Hospital for Children in Philadelphia. Less than a whole liver can be transplanted because the organ has a capacity to regenerate itself.
Dunn headed two teams of surgeons who worked for 17 hours transplanting the liver from a 36-year-old woman who had died just hours earlier in Philadelphia. “We had a small child and a big liver,” says Dunn, who is one of the nation’s leading practitioners of shared-liver transplants and over the past two years has performed the procedure on four pairs of children. Of the eight kids, all are still alive, and only one has had to have a second transplant. “We were either going to be using the right side or throwing it away. This was not a very God-like decision.”
Maybe not, but to the Nusses and Garcias, it surely seemed like one.
When Steven Nuss was born a year ago January, his mother, Michelle, 28, a homemaker, and his father, Keith, 31, a hunting-and-fishing guide in Pike County, Pa., had no idea he was seriously ill. Doctors thought his jaundiced coloring would soon disappear. Remembers Michelle: “They told me, ‘Keep an eye on him, and if he doesn’t improve, call back.’ ”
He didn’t improve. When he was 6 weeks old, the doctors referred Steven to a specialist, who diagnosed biliary atresia, a disease that prevents the flow of bile from the liver to the intestines. In late February doctors tried to buy time with a Kasai procedure, in which Steven’s bile was drained directly into his intestines, but he was still subject to liver infections. In July the Nusses were referred to Dunn, who put Steven on a transplant wait list. According to Michelle, Steven’s body was so bloated, “he couldn’t get his belly off the ground to crawl.”
In Santa Cruz, Bolivia, the Garcia family was undergoing a similar ordeal—one compounded by inadequate medical expertise and their own lack of money. Waldo, the second child of Waldo Sr., 47, an accountant, and Leslie, 42, a homemaker, had been born May 4, 1990, with jaundice. Doctors diagnosed biliary atresia and performed a Kasai. In the fall of 1993, following a second such procedure, Leslie went with Waldo to seek help in the U.S. While staying with a distant relative in Virginia, Leslie went to see Dr. Dunn. “I was sad when he said Waldo needed a transplant,” says Leslie through a translator. “I was hoping there was a medication.”
The Garcias felt even worse when they learned the operation would cost $200,000. After weeks of frantic searching, Leslie discovered a U.S.-based charity called El Banquete del Millón y del Amor Inc., which raises funds mostly for needs in the Latino community. “I pleaded and cried,” says Leslie, “and told them to please help my son. I had nowhere else to turn.” Banquete came up with the entire $200,000.
All that was needed then was a liver. On Oct. 24, when a liver became available, Dr. Dunn told the mothers that he would try transplanting both boys from a single donor. Steven, whose condition was worse, was rushed to the hospital and transplanted first. “I just had to know who was going to have the other half,” says Michelle, who met Leslie in the waiting room.
Following the operation, the little boys were placed toe-to-toe in the intensive-care unit. “They had big charts at the bottom of the bed,” says Michelle. “We’d go over and peek at Waldo’s, and they’d come over and peek at Steven’s, and we’d go, ‘Good, good.’ ”
As their children went through anticipated temporary episodes of rejection, the mothers took turns offering comfort. “We leaned on each other,” says Leslie. After a month of recuperation, Waldo and Steven prepared to go home. But Steven woke up on the appointed morning with a temperature of 104°, and doctors would not let him go. Waldo’s departure was emotional for both families. “They came in four times to say goodbye,” says Michelle. “When Waldo left,” she adds wryly, “that was the first day the liver was actually separate.”
But it was not separate for long. Four days later, Waldo returned for a checkup and to see Steven—his friend for life, says Leslie. Adds Michelle: “If the boys get married, they’ll be at each other’s weddings.”
MARGERY SELLINGER in Philadelphia