A rare liver disease nearly cost a Wisconsin baby her life. Luckily, a donor was found.

NEENAH, Wis. – To the outside observer, Audrey Huss's first birthday party didn't look like anything out of the ordinary. 

There was cake. There was ice cream. There was lots of love from her mom, Kendra, dad, Travis, and older brother, Henry. 

But she was also celebrating with a woman she'd never met before — a woman who helped her make it to her first birthday. A few months earlier, that wasn't guaranteed. 

When Kendra gave birth to her daughter Feb. 4, 2021, she didn't know the difficult road that lay ahead. The baby was healthy, with a bit of jaundice that improved quickly. But around her two-month doctor's visit, the problem was back, and this time it required lab work that sent the Wisconsin family down to Children's Hospital in Milwaukee. 

Doctors performed a liver biopsy, reassuring Kendra and Travis that the concerning results they'd seen in Audrey's lab work could be an error or a minor problem.

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But when the results of the biopsy came back, it was something worse: The two-month-old had biliary atresia, a rare disease in which a blockage prevents bile from traveling from the liver to the gallbladder. In time, it can lead to liver damage and cirrhosis — and a liver transplant is usually required to prevent it from reaching that point. 

"We were really hoping it wasn't biliary atresia because we knew the possibility of a liver transplant," Kendra said. "After her liver biopsy was in and (the doctor and his resident) came in, we had that heart-sinking feeling, just by the look on the resident's face, that it was." 

They tried a stopgap method called a Kasai procedure, in which the blocked bile ducts are removed and replaced with part of the small intestine, which seemed to improve things for a few months. But by August of last year, her abdomen started to fill with fluid — a symptom of liver failure. At the end of the month, she was officially listed as needing a transplant. 

In 2021, close to 12,000 Americans were waiting for a liver transplant, according to federal statistics on organ donation. Because Audrey was so little, the parameters for finding her a donor were extra stringent. She'd need a portion of a liver from a healthy adult who weighed no more than 100 pounds.

Even if someone can meet those criteria, the size and shape of their liver may not be a good match, said Shannon Sova, living donor coordinator at Froedtert Hospital and the Medical College of Wisconsin. Each person's liver has a unique anatomy. For a transplant to work, the donor has to be left with enough blood supply and the liver has to be able to grow with the recipient for the rest of their life. 

"There are so many things that have to fall into place to make this work that it's amazing when it does," Sova said. 

Audrey was so sick in the fall that the family spent most of November living in the hospital, Kendra recalled. Meanwhile, they were trying to spread the word through news outlets and on social media about Audrey's need for a donor. 

Sova estimated that close to 3,000 people applied to be Audrey's donor — from all over the country — but no one was exactly the right match. 

Brenda Burt changed that. 

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'She has a future now'

Burt, of De Pere, Wisconsin, met Kendra's sister Erica through work. As she got to know Erica socially, Burt said, she learned that her niece had biliary atresia but initially didn't think much of it. 

It was a few months later, when Audrey was getting sicker, that Burt asked for an update. She recalled Erica seeming disappointed and hopeless while telling her that Audrey would need a transplant, and in that moment, she decided she would apply. 

She was initially disqualified because she was 10 pounds over the weight limit, but tried again successfully a few months later when the weight limit had inched up to solicit more possible donors. 

After a bevy of testing down in Milwaukee in early December with all signs pointing to the likelihood that she could donate, Burt received a call from Sova. Audrey was not doing well, she remembered her saying. She asked if she could prepare to have surgery immediately upon confirmation that she could donate. 

Burt said her only fear was that the confirmation wouldn't come. 

The transplant process went smoothly. She spent about two weeks in the hospital, and three months later says she feels completely normal, save for the scar on her stomach that reminds her what she did. The liver — the only organ in the body that can regenerate itself — takes just a few months to grow back to normal size after a portion is removed. 

Kendra said she and Travis felt worried up until Audrey had her new liver that something would go wrong. But when nothing did, they could start to breathe easier. Recovery was a slow process, but eventually, their smiley, happy girl they'd lost when she grew sick had returned, Kendra said. 

Audrey will need several medications throughout her life to manage the new liver. Kendra estimated that currently, they're administering medications to her over a dozen times a day. They'll also need to ensure that her body doesn't try to reject the liver. 

But those concerns seem manageable in return for a brighter future ahead. 

"The best part of it is she has a future now," Kendra said. 

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Meeting Audrey at her birthday party brought on a flood of positive emotions, Burt recalled — especially knowing that she and her son were among some of Audrey's first visitors because the COVID-19 pandemic kept the family fairly isolated to protect her health. 

"She's just an angel and a hero to us," Kendra said of Burt. 

Because she lives so close, they're hoping to stay in contact as Audrey grows up. 

Reflecting back on the donation, Burt said the universe couldn't have timed it better. She had applied for a job that she didn't get, and put in an offer on a house that was rejected. While she was discouraged at the time, both of those situations gave way to allow her to go through with the transplant. 

"I really truly believe ... things always work out the way they should," she said. 

In the eight years Sova has been working as a transplant coordinator at Froedtert, only nine transplants have been completed in which a living adult donates a liver to a child. In seven of those cases, the donor was unrelated or didn't have a strong personal connection to the recipient.

To see those people come forward is why she and her team are in the business of transplants, Sova said. Audrey's transplant was a partnership between Froedtert and the Medical College of Wisconsin, Children's Wisconsin and Versiti, a Wisconsin blood center. 

Burt said people have asked her why she chose to donate since she didn't know Audrey personally. Her response is, "Why wouldn't you donate?" 

"If it was me and my son, and we needed a liver transplant, I would hope and beg and plead anyone to do that for us," she said. "(The transplant) has been equally as transformative for me, to remember what's important, and how you want to live your life, and the legacy you want to leave behind." 

If you are interested in becoming a living organ donor, you can visit froedtert.com/transplant/live-donor.

Follow Madeline Heim on Twitter: @madeline_heim.