By Brad Bowman
Ethan Zoeller will celebrate a two-year anniversary this Thursday. Not for his birthday, but for receiving a transplant that saved his life.
When Shane and Carmine Zoeller looked at the results of an ultrasound and they knew something wasn’t right with their unborn child. Their son’s stomach wasn’t processing material and blockage was occurring somewhere.
When Ethan was born, doctors diagnosed him with Hirschsprung’s disease — a disease caused by blockage in the intestines due to improper nerve and muscle development in his bowel. He couldn’t digest food, he couldn’t learn to eat properly and 30 years ago there no was no known transplant procedure. Zoeller would have died. According to his father, Shane Zoeller, surviving a complicated surgery didn’t seem likely for his newborn son.
“Within his first six months, we had spent 10 days at Riley Hospital for Children in Indianapolis. He couldn’t eat by mouth, it all came back up,” Zoeller said. “He had to have a G-tube (a gastronomy tube) inserted in the stomach. With this type of disease, kids don’t learn to eat — something you and I take for granted.”
Henry County resident Michael Douglas, Ethan’s grandfather, contacted Trust for Life, a program enacted in 1992 by the Kentucky Association of Circuit Court Clerks for the promotion of organ and tissue donation. Douglas was able to get his grandson on the donor list.
“Michael met the Executive Director Shelley Snyder in person,” Zoeller said. “She put us on the transplant list.”
A normal case of the disease affects a small portion of the colon, but in Ethan’s case the affected area made up almost the entire small and large intestines.
“The doctor said in all of his years he hadn’t seen a case like this,” Zoeller said. “Ethan would need a single bowel transplant and a double barrel colostomy.”
The Zoellers visited doctors in Indianapolis, Uof L Hospital’s Research Unit and their surgeon’s final destination: Cincinnati Children’s Hospital.
Before surgery, Ethan continued to suffer health complications, recieved an experimental drug as a result of liver damage and the family had several calls for transplants that were false runs.
“You are not the only family they call when they think they have a match,” Zoeller said. “Sometimes, it could be two families who get the call. It needs to be a perfect match with blood type, and tissue type. Luckily Ethan’s blood type is O positive. He is what they call a universal recipient.”
Doctors must inspect organs first to ensure there is no damage to the blood vessels, and that it meets optimal standards for transplanting. And a recipient’s family has to be ready to leave when they get the call.
“By the third time, we got the call and we were there two hours later in Cincinnati.
“It’s a waiting game and we knew something was different this time. Our nurse, Abby Netter, kept giving us updates and we were in a waiting room with a bed. We were on pins and needles because we knew it was going to happen. By 2 a.m., they were getting him ready for surgery.”
By 4:52 a.m., the Zoellers watched as their son was handed off to a team of nurses and doctors for surgery. The surgeon Rodrigo Vienna and his team had done 30 types of the transplants, Zoeller said, and he knew he was in good hands.
“We checked in Feb. 27 and checked out May 7,” Zoeller said. “It was crazy hours with doctors checking him at midnight, 6 a.m. and all the hours of the night. We didn’t get a good night’s sleep for six weeks afterwards, but everyone took care of us.”
The Zoellers trade off caring for Ethan. One works during the day and the other at night. Ethan has undergone rehabilitation treatment to learn to eat, talk and walk. Health challenges continuously present themselves as Ethan is on medication that suppresses his immune system so his body won’t reject the transplant. Colds and fevers have to be watched closely and may result in frequent hospital visits.
“You don’t think about how many things you learn as a baby. He has to learn how to eat since he didn’t do that when he was born,” Zoeller said. “His transplant anniversary is this Thursday and when we sit here and talk about his anniversary, we think about some little baby died so that he could live. Before he was born, we had to make the decision about the quality of his life and the challenges we would have as young parents. Some things are difficult, but when you have a living, breathing three-year-old that says daddy, it’s worth it.”
According to Henry County Circuit Court Clerk Gina Lyle, a Trust For Life board member, Henry County residents have donated $2,290 to the Trust For Life in 2014 and 397 residents have joined the Kentucky Organ Donor Registry.
“We had a dear friend, Lin Powell, in the courthouse that had a failed kidney,” Lyle said. “He had a transplant and he is still with us today. That’s when it hit home for me. He is a dear friend. People need to be educated about the program. There are a lot of misnomers about being an organ or tissue donor.”
For more information about becoming a donor or making a donation visit: www.trustforlife.org.