New York’s top hospitals are locked in a medical-care arms race—and thank God for it. NYU builds a clinical cancer center, Memorial Sloan-Kettering introduces a state-of-the-art cancer-research facility. New York–Presbyterian poaches Lenox Hill’s top cardiologists, Lenox Hill immediately reloads. This never-ending one-upmanship keeps the city at the cutting edge of medical care around the world, and New Yorkers consider such first-rate healing services their birthright. But say you live in Texas, and your baby is sick, deathly sick, and no one near you can make him better. Then what do you do?
In 2002, Jaime and Chris Sheeder noticed changes in their 10-month-old son, Nickolas. “He lost his appetite and seemed tired all the time, and his urine wasn’t the right color,” says Jaime (the family lived in Idaho at the time, but has since moved to Dallas). They brought Nickolas to the pediatrician for a checkup, and found that his iron levels were unusually low. “Our doctor put him on an iron supplement, but it didn’t help,” says Jaime. “He wasn’t eating and he was really lethargic—we knew something was very wrong.” After a series of tests, the Sheeders found that Nickolas had a rare disease called atypical hemolytic uremic syndrome, a genetic condition that causes a certain protein deficiency (Factor H) in the liver, and, eventually, kidney failure. Over the next five years, Nickolas underwent a succession of invasive treatments, with diminishing results. “His body was building up a tolerance to the treatments, and his kidney function was getting worse,” says Jaime. “In the summer of 2006, we came to a crossroads—our doctor in Dallas told us we had no options but to seek a liver-and-kidney transplant for Nick, but the outcomes for those surgeries were so poor, we knew we were going to have to battle to have a hospital take us on.” Jaime and Chris looked into places like UCLA, Stanford, and Pitt, but couldn’t find the right program. Then they learned of a recent paper published by a team of doctors at Mount Sinai detailing the first successful protocol for doing a liver-kidney transplant for reasons of a gene-mutation deficiency. It was the exact surgery Nickolas needed.
On September 9, Nickolas underwent a successful twelve-hour liver-and-kidney transplant. Now Nickolas, 5 years old, is back home with his parents in Dallas, and doctors say he can look forward to a long, healthy life. “Nick likes to pull up his shirt, show people his scars, and tell them, ‘Mt. Sinai fixed me!’ ” says Chris. Initially, when he and Jaime decided to come to New York, they were apprehensive, says Chris. “I was only there once, twenty years ago, and my wife had never been, so we didn’t really know what to expect.” Now what do they think? “Spectacular.”