By Nancy Price
Five-year-old Natalie Hodgson of Greenwood, like many girls her age, enjoys coloring, playing with her dolls and attending preschool. She also likes to ride her bike, visit the beach, play with her little brothers and sing in the choir at church.
The difference is that she has a disease that requires a liver transplant.
After experiencing a normal pregnancy and delivery, Christy Hodgson, Natalie’s mother, brought Natalie home from the hospital. The new mother noticed that Natalie’s skin was turning yellow. After the baby’s first checkup, the pediatrician administered a series of tests and determined that Natalie had biliary atresia, a rare condition found in newborns. The bile ducts inside and outside the liver are scarred or blocked. Bile is unable to flow into the intestine, so it builds up in the liver, leading to scarring, loss of liver tissue and function, and cirrhosis.
A month later, Natalie had a Kasai operation, which allows the bile to drain. Yet, for the following two-and-a-half years, she was still often admitted to the hospital for cholangitis, an inflammation of the bile ducts.
During a routine clinic appointment after Natalie’s fourth birthday, doctors ordered an echocardiogram and additional labs, which confirmed she had developed hepatopulmonary syndrome, which affects the lungs of those with advanced liver disease. The only cure for the disease is a liver transplant.
Despite the diagnosis, “she’s doing pretty well,” Christy said of Natalie. “We’ve been really fortunate. She loves to be outside. She loves camping, loves riding bikes with her cousins. We took the kids to the beach last summer and she talks about it all the time. She doesn’t like to miss anything. She’s very motherly (to her two little brothers). She’s all girl, she loves dolls. She has three services to sing in the choir during Christmas service.”
Yet, “she’s fatigued constantly,” Christy noted. “Some days she’ll take four naps a day.” In addition, those with liver disease have a generalized itch across the body, known as pruritus. “She scratches so much (her body) bleeds.” As well, due to gastrointestinal issues, Natalie uses the bathroom more often than her peers. As a result, “she’s very self-conscious (of that),” Christy said.
The family is now waiting on a call from Riley Hospital for Children for an available liver. The donor, ideally a small child or very petite adult, must have the same blood type as Natalie, though the hospital will not accept a liver from a live donor.
To help cover the cost of a liver, friends and family, including Mary Richardson, have hosted various fundraisers at businesses in the Greater Indianapolis area, including TopGolf Fishers, Tried & True Alehouse and Ella’s Frozen Yogurt & Candy Shop. The goal is to raise $50,000. Currently, about $16,200 has been raised.
“We have a couple restaurant nights in the works, and we are in the beginning stages of planning a book club event that we will launch in January,” Richardson said. “We are also working on a yoga event for the spring and a scrabble tournament for late winter or early spring. We would love for people to get involved!”
Individuals or businesses with fundraising ideas, or those willing to help with a fundraiser, may contact Isabel Hawkins at firstname.lastname@example.org.
In addition, donations are accepted at COTAforNatalieRose.com. “I would also encourage people to check with their employer; many employers will match charitable contributions,” Richardson said.
“It is our hope that individuals will help share and support COTA (Children’s Organ Transplant Association) for events on Facebook and via Natalie’s website as well as talk about upcoming events and share Natalie’s story,” she added. “Lastly, it is also helpful to educate yourself and your family on transplant and organ donation.”
Five Questions with Natalie Hodgson
- WHAT DO YOU WANT FOR CHRISTMAS?
Anything from Frozen II and crafts.
- WHERE IS YOUR FAVORITE RESTAURANT AND WHAT DO YOU LIKE TO EAT?
Chips and queso at Don Cuervo.
- WHAT IS YOUR FAVORITE ANIMAL?
My dog, Stella.
- WHAT IS YOUR FAVORITE MOVIE?
Anything by Disney.
- WHERE ARE YOUR FAVORITE PLACES TO VISIT?
Target and church every Sunday.