Winchester child receives gift of life thanks to liver transplant

Published 9:07 am Friday, October 20, 2023

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Evelyn Marcum’s first year of life has been anything but ordinary, yet it is one that her family is thankful for, all thanks to the most miraculous of gifts.

The Winchester child received a liver transplant on Sept. 23, almost a year after being diagnosed with biliary atresia, which causes the liver’s bile ducts to become blocked and scarred.

The start of Evelyn’s journey to her new liver started when she was just a few days old.

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“We started noticing there were signs that something might not be right when she was five days old,” said Evelyn’s mother, Nicole. “We were sent to UK Children’s Hospital in Lexington. They did testing, and we spent a week up there before they finally diagnosed her.”

Biliary atresia is a rare diagnosis for a child, especially one as young as Evelyn.

Nicole Marcum said that the surgeons at UK see one case of it on average per year and that it affects only one in every 50,000 children.

When Evelyn was just 45 days old, she underwent a surgery known as the Kasai Procedure.

“It is a major abdominal surgery,” Nicole said. “What they did was they took a piece of her intestines, and they connected it directly to her liver to bypass those ducts outside that were not working.”

It was initially thought that the surgery was successful.

According to Nicole, Evelyn healed “wonderfully” from it and “had a really good couple of months.”

Then, in mid-May, Nicole and her husband, Cameron, noticed that Evelyn’s skin was turning yellow, a symptom of her illness, and that her lab numbers were not returning with favorable results.

The family was then referred to Cincinnati Children’s Hospital. Evelyn would be in and out of the facility for the next few months as she battled infections at her surgery site.

The infections caused her bile not to drain and led to cirrhosis of her liver.

With no options left, Evelyn was approved to be put on the transplant list for a new liver in July.

The Marcums then began the search for a living donor.

“An adult can donate a portion of their liver – it is actually the only organ that is regenerative – so the portion that is taken will grow back in a few months,” Nicole said.

A host of people applied to be Evelyn’s donor; one of Nicole’s brothers seemed to be a perfect match.

As he was undergoing testing to ensure that he was a match, the Marcums got even better news.

“It just so happened that Evelyn ended up getting a liver offer in late September,” Nicole said. “We got the call that Evelyn would receive a liver…It was a unique circumstance because typically, you get a portion of a liver from a living or deceased adult donor, so it would have been a portion of a liver that would grow with her. In this scenario, it was actually a whole liver, meaning she received a donation from a child of a similar age to her.”

The Marcums are thankful for the donation but remain cognizant of how the donation came to be.

“We felt for the family that decided to donate their child’s organs,” Nicole said. “It is bittersweet. We are beyond grateful…Having a whole liver gives Evelyn a better prognosis for her future.”

The family is also thankful for the work of two nonprofits: the Children’s Organ Transplant Association (COTA) and CORSAIR for Kids.

The nonprofits assisted with fundraising and other financial needs.

Though Evelyn’s prognosis is positive, the Marcums are still fundraising to pay for her medications and future doctor visits.

They are hosting a trunk or treat event on Saturday from 5:30-8:30 p.m. at College Park in Winchester.

For updates on Evelyn, visit the Evelyn’s Liver Journey page on Facebook.