Liver Transplant: Kenzie’s Story
Jaundice in newborns is certainly common enough, so when Kenzie Lewallen started turning yellow at just seven weeks old, her mom, Jennifer, didn’t think too much of it.
“I thought, oh, she's going to get to be a little glowworm, be in the lights, and it was going to be fine,” she said. “I never remotely thought it was going to be a liver issue — that it would be life-threatening.”
Her primary care doctor recognized that this late-onset jaundice was certainly not normal and referred the family to Children’s Mercy Kansas City. The liver team performed a biopsy of Kenzie’s liver, followed by a Kasai procedure, a surgery to remove her blocked bile ducts and gallbladder and sew a segment of the intestine to her liver. During the surgery, the team was able to confirm the diagnosis of biliary atresia, a rare condition that causes inflammation and blockage of the bile ducts.
“They were very supportive and comforting, and they made sure to go through every detail of exactly what was going to happen,” Jennifer said. “Honestly, it was almost a sigh of relief when they did confirm her diagnosis, because we knew what was wrong. Now we have a plan of action.”
Over the next seven years, Kenzie lived a somewhat normal life: The Kasai procedure and supporting medication kept the liver issues under control, and Kenzie grew into a
thriving toddler and preschooler — one obsessed with Barbie and princesses, along with exploring and anything science related.
“If you met her on the street, you would never know anything was wrong with her,” said Jennifer. “People who would meet her were always telling us, ‘She's just so happy all the time,’ even though she's been through so much.”
Yet, beneath the smiles, Kenzie’s liver was declining. She was developing cirrhosis along with portal hypertension, one of the more serious complications of advanced liver disease that occurs when scar tissue compresses the liver’s blood vessels and reduces the flow of blood. These blood vessels can burst and cause internal bleeding. The liver team decided Kenzie needed a new liver — and needed one while she was still healthy enough to recover.
In the summer of 2022, the team began the process of evaluation and officially listed Kenzie on the transplant list in November. Because Kenzie’s condition was stable, however, she was lower on the priority list, Jennifer said.
“Kenzie was definitely down toward the bottom,” she said. "I thought we’d be on the list for a year or two years, whatever. But when I was talking with the coordinator, she's like, ‘Oh no, with kids it goes a lot faster.’”
Sure enough, just three months later, Jennifer was finishing her workday as an elementary school teacher when she got the call. They checked in to Children’s Mercy that evening, and Kenzie was taken to the operating room the next day. A long day of surgery later, the family was finally able to see Kenzie in the ICU after a successful transplant surgery.
“They said the liver was perfect. It was meant to be hers,” said Jennifer. “They said it fit beautifully. It just switched right in, and it was already releasing bile like it was supposed to.”
Within seven days, Kenzie was back home and on the road to recovery. She’ll be on anti-rejection medication for the rest of her life, and she’ll need to take special care of her oral health and vision (some of the medications can affect eyes and teeth).
“No contact sports, so she won’t be playing football,” Jennifer joked. “But other than that, they said she should live a normal, happy life.”
That happy first grader is already back in school, still obsessed with movies and TV shows — her current obsession is “Bluey” — and things are slowly returning to
normal for Kenzie. Jennifer’s thankful for the team at Children’s Mercy and especially the kindness she received from Kelly, one of the pre-transplant nurses who remains in contact with the family today.
“She has always been a hundred percent there for us, even when I just have random questions,” she said. “She still will randomly email me and just kind of check in. We send her updated pictures of my curly haired mess. We definitely would be lost without her.”
Jennifer said she’s also still wrestling with the reality of how her daughter came to receive a new liver but remains thankful that she’ll continue watching her firstborn grow into a healthy adult.
“I had to hope for someone else's child to die so that my child could live,” she said. “I've dealt with the guilt of it and even the gratefulness of it that someone else's family was able to take this suffering and pain and turn it into a life that hopefully will be well lived.”