Diagnosed with biliary atresia — a rare form of pediatric liver disease — as an infant, Victoria “Tori” Saros has spent her life navigating a complex medical journey. Now, through her resilience and determination, she’s not only advocating for liver health awareness but also offering support to others in similar situations, sharing her story to educate and inspire.
At about 8-weeks-old, following her diagnosis of biliary atresia, Saros was sent to Riley Hospital for Children in Indianapolis for a Kasai procedure.
“The goal of the procedure is to keep your native organ as long as possible,” Saros said. “It’s like a temporary fix for children — sometimes it works, and sometimes it doesn’t. In my case, it worked.”
Although she experienced a bout of cholangitis shortly after the procedure, Saros was able to enjoy a relatively normal childhood. It wasn’t until she was 16, while attending Marian High School in Mishawaka, that she had her first significant episode of cholangitis since infancy.
Saros’ next episode occurred around age 21, while she was studying graphic design at Ivy Tech Community College in South Bend. As she continued to have episodes more and more frequently, doctors determined that it was time for a liver transplant.
Upon learning that she would need a liver transplant, Saros’ cousin immediately volunteered to serve as her donor.
“The liver is the only regenerating organ, so when you have a living donor, they give you about half — or sometimes 60%— of the living donor’s organ,” Saros said. “The donor is left with 40-50% of their liver, and both regenerate the missing part within about six to eight weeks.”
On January 22, 2024, at the age of 25, Saros received her liver transplant. However, the surgery was more complicated than expected.
“Initially, they planned to make just one cut on my cousin, but because of his liver’s shape, it became difficult to wiggle it out without possibly causing internal bruising or other damage,” Saros said. “It ended up being easier for them to do the full cut, like what I have, so it took a lot longer than they originally anticipated.”
Saros was prepped and ready on the operating table, connected to all the necessary equipment. She waited there with just a few doctors while the rest of the team moved to the next room to work on her cousin, trying to catch up on time they had lost earlier.
“They ended up placing some sponges in to connect the tubes, but they didn’t reattach my muscles that day because it got so late,” Saros said. “The doctors were all very tired, so they decided to call it a night. They finished with me around 10:30 p.m. after starting at 8 or 8:30 a.m. that morning. The next day, at 3:45 p.m., we went back in, and they attached the new liver and put my muscles back together.”
As she recovers, Saros has been determined to share her story with others. She is passionate about raising awareness of pediatric liver disease, as many people aren’t familiar with it.
“A lot of people don’t expect someone my age to go through this,” Saros said. “They have a hard time understanding that people can have pediatric liver disease. The first thing they assume is that I must’ve been drinking or doing drugs, so I often get asked what caused it. I don’t mind answering, but it’s a reminder that many don’t realize there are other reasons why someone might need a liver transplant.”
Committed to helping others in similar situations, Saros shares what she’s learned through her experiences, offering resources and promoting liver health.
“I like educating people because I’ve lived with this my whole life, and going through it taught me so much about my body,” Saros said. “I think it’s important to help teach others what the liver does and why it’s crucial to take care of it.”
Saros emphasizes the importance of maintaining a positive outlook and building a strong support system.
“Your support system is truly everything,” Saros said. “It’s about building a positive environment for yourself because negativity is so easy to fall into. Surround yourself with positive people, create that positive mindset, and if you can’t find it, build it. I always say to look for the light wherever you go, even in your darkest moments. There’s always something there — find it, hold on to it, and use it to make the light brighter.”
In her free time, Saros enjoys baking, drawing, coloring, and taking on DIY projects.
“Make your own joy, even in your darkest of days — your light is worth shining!” Saros said.
If you’d like to follow Saros’ journey, visit her website or follow her on Facebook.