A second chance at life
Geneseo’s Carlie Newton was dealt a tough hand at an early age and has overcome hurdles, but she is not letting any of that stop her as she prepares to compete for the second time in the U.S. Transplant Games.
When Carlie was just three months old she was diagnosed with a liver disease called Extrahepatic Biliary Atresia, a failure of the bile duct that takes by-products from the liver to the intestine. This disease occurs in one of every 10,000 births, and females have the disease twice as often as males. The cause is unknown.
Carlie and her parents, Cindy and Vince Newton, were referred to Wyler’s Children’s Hospital in Chicago where Carlie had her first surgery called the Kasai procedure on Sept. 11, 1997. Her liver was linked directly to the small intestine, forming an artificial bile duct, according the Oct. 10, 1997, edition of the Geneseo Republic. This procedure didn’t work for Carlie and a second Kasai Procedure was scheduled for Sept. 30, 1997.
However, when doctors began surgery they noticed the disease was progressing rapidly.
Doctors told the Newtons the procedure was not going to work, and Carlie’s original liver was going to last six to 10 months.
Carlie’s doctors didn’t have to look far for a donor as Carlie’s mother, Cindy gave her daughter 20 percent of the lower left lobe of her own liver.
“I knew it had to be done and I just said ‘let’s go,’” said Cindy. “We had to make sure Carlie was over 10 pounds before the transplant, and I had to go through different tests to make sure I was compatible.”
Carlie was born Aug. 11, 1997, and the transplant was performed on Dec. 22, 1997.
“We wanted to wait to get through the holidays, but her temperature kept spiking so we decided to just get it done,” said Cindy. “You just do what the doctors tell you to do and stay strong. We had a few hurdles, but you put your trust in God.”
After the transplant, Carlie had a few complications, but now she goes for normal check ups, blood draws and once a year heads to Iowa City, Iowa, for a check up. Carlie still takes her anti-rejection medicine.
Carlie, who will be an eighth grader at Geneseo Middle School, has not let her transplant slow her down. She is a member of the school’s volleyball, basketball and track and field teams.
Carlie said she has only been worried about the potential of being hit in the stomach a couple of times while playing sports.
“I tried soccer when I was younger, but got hit in the stomach and that was it,” said Carlie. “In volleyball, I once dove for the ball and landed on top of the ball. I was worried about my stomach, but nothing happened. I am just a normal kid.”
“Carlie competing in activities scares me a little, but we just tell her to watch her stomach,” said Cindy.
Competing in the 2010 U.S. Transplant Games will be the second time Carlie has taken part in the event. In 2008, Carlie participated in the games in Pittsburgh, Pa. where she won four medals in four events.
“Walking in to the 2008 games and getting four medals in four events I was like, ‘I can’t believe I did this,’” said Carlie.
Carlie said she enjoys meeting other people at the games who have had transplants, and she has kept in contact with several of the people she has met, but said the some competitors don’t like to talk after she’d beaten them.
To qualify for the games, a participant has to be some type of recipient, have a physical and the OK from a doctor to participate. Competitors range from age 2 to 85, and more than 150 Illinois residents participate.
This year’s games will be held in Madison, Wis. from July 31-Aug. 4. Carlie will be competing in the 100-meter dash, 50-m swimming freestyle, bowling and the softball throw.
The games are run just like the Olympics with opening and closing ceremonies where the athletes walk in with their state, followed by living donors and then donor families, said Cindy.
“It was an amazing experience meeting other families, along with other living donors and donor families,” said Cindy of the first Transplant Games they attended. “It is very emotional to see all the teams walk in. You have to make sure you have Kleenex.”
Besides competition there are a variety of workshops the Newtons get to partake in.
“One workshop Carlie is doing is a Build-A-Bear Workshop, where she will make two animals, one for her and one to give to the Children’s Hospital in Madison,” said Cindy. “There are a number of workshops and conferences where you get to listen to other people’s stories.”
At the closing ceremonies, all the athletes march back in and the games’ committee will announce where the 2012 games will be held.
The U.S. Transplant Games are held every two years and on the off years the World Transplant Games are held.
“I plan to compete as long as I can,” said Carlie, who would also like to compete in the World Transplant Games sometime.
Through this entire experience, the mother-daughter duo has become closer.
“We have a closer bond now,” said Cindy, whose liver is back to its normal size. “We are pretty tight.
“People don’t realize how many peoples’ lives can be saved by organ donation. We just want to make people aware to give life and donate. You can save a lot of lives.”
“She’s a hero,” said Carlie of her mother.
“She is our miracle child,” said Cindy.
“My mom is fun loving, kind-hearted, and so
special to me. She is my lifesaver because she
donated a part of her liver to me and gave me a
second chance at life. I am so lucky to have her as my mom!”
-Carlie Newton’s tribute to her mom for the
Transplant Games’ Living Donor Ceremony.