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Adaline Karg seemed to have a completely normal birth. Like many infants, she was born with jaundice, a pale, yellow tinge to her skin, which her doctor said would fade in a few days. However, after a few days, it became clear that something was wrong.
“We had no warning,” Adaline’s mother, Julie, said. “Four days after birth, we were still at the hospital when she started vomiting, going into comas, and having hyper-anemic episodes, each one a hit to her brain.”
Doctors diagnosed Adaline with argininosuccinic acid lyase deficiency (ASALD), a rare disorder that leads to a buildup of ammonia in the blood, which inhibits the function of cells in the nervous system. Infants with this illness often experience vomiting, refusal to eat, progressive lethargy, and comas. As the disease progresses, it leads to a buildup of argininosuccinic acid in the blood that can lead to cirrhosis and liver failure.
To help slow the progression of the illness, Adaline was put on a low-protein diet, but her condition gradually continued to worsen. She struggled to reach important milestones. Her growth slowed because of her health and because of her limited, low-protein diet.
As time passed, one thing became certain: Adaline needed a liver transplant.
“We knew that Addie’s liver was going to fail,” said Julie, “We just didn’t know when.”
During the first two years of Adaline’s life, she went to hundreds of doctor appointments and stayed in several different hospitals where Julie and Mike, Addie’s father, fought to find the best treatment and the best care for their daughter. After years of struggle, a friend suggested UPMC Children’s Hospital of Pittsburgh.
At UPMC, they evaluated Adaline’s condition and recommended a liver transplant. The doctors also spoke with Julie and Mike about the possibility of a living-donor liver transplant, a potentially life-saving option for patients on the waiting list.
During a living-donor liver transplant, a surgeon removes a portion of a healthy person’s liver and transplants it into the sick patient. Living-donor transplants are made possible by the liver’s unique ability to regenerate, or regrow in about eight to 10 weeks, although recovery times vary. This procedure allows patients to receive a transplant sooner, before the disease progresses to a more severe state, often leading to better long-term outcomes. UPMC believes in living-donation and speaks about it with every patient that might benefit. But to pursue this journey, Julie needed to identify a person willing to donate.
Inspired by the conversation with her doctors, Julie started a Facebook page to share Addie’s story and to keep in touch with their community back in Ohio. With as much faith as she could muster, Julie published her first post, asking someone to donate a portion of their liver to Addie.
After seeing Julie’s Facebook post, Angel Payne seriously considered donating her liver to Addie. Angel had known Julie for years. They met on an 8th-grade school trip that they both chaperoned for, Julie as a staff member and Angel as a parent. On the trip, they became fast friends because of shared interests. Both are enthusiastic photographers, goat raisers, and have daughters of a similar age. Little did they know that years later, Angel would travel to Pittsburgh to be evaluated as a potential donor for Adaline.
Angel scheduled all the evaluations 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.”
Every potential donor at UPMC goes through a thorough set of evaluations to ensure they’re a suitable donor, and that they can safely give. This evaluation includes physical and psychological examinations, blood work, and other tests and usually takes about three days to complete. Before she could donate, Angel needed approval from the physicians at both UPMC Montefiore Hospital and UPMC Children’s Hospital.
She got the results a few weeks later saying that she was a suitable donor. If she wanted to donate, all she had to do was tell Julie.
“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.”
A portion of Angel’s liver was successfully transplanted into Adaline on October 31, 2017.
Both Adaline and Angel had to stay local to UPMC until the transplant team gave them approval to return home, so they focused 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, it typically takes about eight to 12 weeks to return to pre-surgery levels of health. One year after the transplant, Angel successfully ran in a half-marathon, seeing it as a commemoration of her living-donor journey.
“Addie rocked right through it,” Julie said. Trying to express her gratitude for the UPMC staff, she struggled to find the right words: “The nurses were phenomenal. In Pittsburgh, they’re going to take care of your kid.”
More than a year later, Addie gets to be a kid again. Her hair came back, and she gets to 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 can’t help but feel grateful for what she has.
Julie continues to post to her daughter’s Facebook page, where she recently shared 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.”
Addie and Angel’s treatment and results may not be representative of all similar cases.
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