Adaline Karg and Angel Payne – Living-Donor Liver Transplant Patient Story

Adaline (Addie) Karg was born with jaundice, giving her skin a pale, yellow tinge. Her doctor said it would fade in a few days.

But after a few days, it became clear that something was wrong.

"We had no warning," Addie's mother, Julie, said. “Four days after birth, we were still at the hospital. She started vomiting, going into comas, and having hyper-anemic episodes."

Doctors diagnosed Addie with argininosuccinic acid lyase deficiency (ASALD).

ASALD is a rare disorder that leads to a buildup of ammonia in the blood. This prevents the normal function of cells in the nervous system.

Infants with ASALD often vomit, refuse to eat, seem increasingly tired, and sometimes slip into comas.

Over time, the disease causes a buildup of argininosuccinic acid in the blood which can lead to cirrhosis and liver failure.

To help slow the progress of the illness, Addie started a low-protein diet. But her health continued to worsen.

She struggled to reach key milestones and her growth slowed because of her disease and also because of her low-protein diet.

As time passed, one thing became certain; Addie needed a liver transplant.

"We knew that Addie's liver was going to fail," said Julie. "We just didn't know when."

Living-Donor Transplant at UPMC Children's Hospital of Pittsburgh

During the first two years of Addie's life, she went to countless doctor appointments. She also stayed in several hospitals as her parents sought the best treatment and care for their daughter.

After years of struggle, a friend suggested UPMC Children's Hospital of Pittsburgh.

At UPMC, they assessed Addie's condition and suggested a liver transplant. The doctors also spoke with Julie and Addie's father, Mike, about a living-donor liver transplant.

But to pursue this journey, Julie and Mike needed to find a person willing to donate.

Inspired by the talk with Addie's doctors, they started a Facebook page to share their story.

Julie mustered the faith to publish the first post, asking someone to donate part of their liver to Addie.

A Friend Donates Her Liver

After seeing Julie's Facebook post, Angel Payne thought about donating her liver to Addie.

Angel had known Julie for years. They met as chaperones on an 8th-grade school trip — Julie as a staff member and Angel as a parent.

On the trip, they became friends. Both are avid photographers, goat raisers, and have daughters of a similar age.

Years later, Angel would travel to Pittsburgh to see if she could be a potential donor for Addie and scheduled all her appointments and tests for the same day.

"It was pretty intense," she said, laughing. "But putting it all in one day worked best for my schedule and having to travel to UPMC."

At UPMC, every potential donor goes through careful testing to make sure they're a suitable donor and can donate safely. This process includes physical and mental exams, blood work, and other testing.

The testing usually takes about three days to complete. Before she could donate, Angel needed approval from the doctors at both UPMC Montefiore Hospital and UPMC Children's.

A few weeks later, she got the results saying that she was a good match. If she wanted to donate, all she had to do was tell Addie's parents.

"I don't remember a lot of that night," Angel said. "I invited myself over for dinner and we were eating pizza. And I just remember telling them that if they wanted it, I was offering part of my liver."

Surgeons successfully transplanted part of Angel's liver into Addie in Oct. 2017.

A Child Back on Track

Both Addie and Angel had to stay local to UPMC until the transplant team gave them the okay to go home. This gave them time to focus on their recovery.

"Recovery was tough. Physically, emotionally, mentally," Angel said. "But I'd do it again 1,000 times over."

Although recovery times vary, most people need about 8 to 12 weeks to return to pre-surgery levels of health.

One year after the transplant, Angel ran in a half-marathon. She saw it as a tribute to her living donor journey.

"Addie rocked right through it," Julie said.

Trying to express her gratitude for the UPMC staff, Julie struggled to find the right words.

"The nurses were phenomenal. In Pittsburgh, they're going to take care of your kid," she said.

More than a year later, Addie gets to be a kid again. Her hair came back, and she can eat whatever she wants.

"She can have cheese now, and she loves cheese," Julie said, laughing. "And in one year after the transplant, she spurted up from a size 4T to a size 6 in girls."

Even when Addie uses her newfound skills to color all over the walls, Julie and Mike can't help but feel grateful.

She continues to post to their daughter's Facebook page, recently sharing a video of Addie walking for the first time. All thanks to the generosity of her living donor.

"I always say that Mike and I gave Addie life," Julie said. "But Angel saved it."

Adaline and Angel's treatment and results may not be representative of all similar cases.