Young transplant patient scores big moment on field

“He did well,” his mom says. “Two days later, they pushed back in his bowels, which is the normal procedure. He started doing well. He had some inflammation in his belly, but they said that was normal as well.”

But Xander’s medical problems weren’t over. “By looking at him and even at his labs, you’d have no idea of everything that was going on inside of him,” Garnsey says. 

The baby boy developed an infection in his intestines and had to have part of his bowel removed. He also had a fistula, which is an abnormal opening in the digestive tract, and needed an ostomy bag to gather waste from his system. On top of that, he needed an intravenous line and a gastronomy tube to help make sure he got the medicine, fluid and nutrients he needed.

Xander’s parents learned how to use the medical devices and took him home when he was about two-and-a-half months old. But it soon became clear that something was wrong with his liver. “His bilirubin level would jump and go back down,” Garnsey says. “He was very yellow.”

Xander had another operation that November. In December, doctors told the Garnseys that Xander would need a liver transplant. “It was very hard after everything he’d already been through in that first year,” Garnsey says.

He went on the transplant waiting list on Dec. 22, 2010. Two days later, on Christmas Eve, they got a phone call. “They had found a match.” 

Xander had transplant surgery early the next morning at MUSC Children’s Health. “He had his second chance at life,” Garnsey says.

Today, Xander is a second-grader who likes throwing a football with his dad, painting, playing with Legos and trucks and reading. He also collects toys, coloring books, gift cards and blankets to donate to kids at MUSC Children’s Health and the Ronald McDonald House during the winter holidays.

His mother says his family is grateful for the support they’ve received over the years. “The blessings, the prayers from our friends and family. We cannot ever stress enough how thankful we are for MUSC. You don’t feel like your child is one in thousands. You feel like your child matters.” 

Doctors still monitor Xander carefully. He has an enlarged spleen and portal hypertension, so he’s on a medication to slow his blood flow. But you wouldn’t know it to see him, his mother says. “He’s done really well.”