Luna's story: Smiling brighter with a new liver

At 1 a.m. on November 19, 2024, Ashtin and Sam got the call: A liver was available for their almost 2-year-old daughter Luna. They needed to be at Children's Health℠ within eight hours. So they packed the car, with Ashtin seven months pregnant, and drove six hours from West Texas to Dallas.

A little while later, 53-year-old massage therapist Rachel from Garland, TX, got the same call, telling her to drop everything and come to UT Southwestern Medical Center.

One liver was about to save two lives.

"Leave now. Come straight to Dallas"

When Luna was just two months old, her parents noticed that her eyes and skin had a yellowish tinge (jaundice). Their pediatrician suggested switching from breastfeeding to formula. But Luna only became fussier. And then her stool turned grayish-white.

Blood tests confirmed that something was wrong with Luna's liver. After an inconclusive ultrasound, her pediatrician recommended seeking more specialized care at Children's Health.

Sam called and spoke with Isabel Rojas Santamaria, M.D., Pediatric Gastroenterologist and Hepatologist at Children’s Health and Associate Professor at UT Southwestern.

"As soon as I told her what was going on, she said, 'Leave now. Come straight to Dallas,'" Sam says. "We didn’t even go home to pack a bag, we just got in the car and started driving."

A diagnosis of Biliary atresia

A follow-up test confirmed that Luna had biliary atresia, a condition where a child's bile ducts are missing or don't form properly. If left untreated, it can cause liver scarring, liver failure and a need for liver transplant.

The Children’s Health team immediately scheduled Luna for the Kasai procedure, a procedure to help restore drainage in the liver, as soon as possible. But during the procedure, Luna's doctors learned that her liver had already sustained a lot of damage – and recommended her for a transplant a few months later.

"Unfortunately, Luna had a late diagnosis," says Lesli McConnell, M.P.A.S., PA-C, Physician Assistant - Pediatric Transplant Surgery. "Her Kasai procedure attempted to improve the bile flow in her liver, but this surgery is usually performed much earlier to have a better chance of success."

Luna was put on the transplant list and her family did everything they could to help her in the meantime. Luna was doing better with the Kasai procedure – hitting milestones, playing with big sister Chloe, gaining weight and starting preschool. Their community rallied around them, holding barbecues, bake sales and other fundraisers to build emotional and financial support.

A donor liver from a similar-aged child would likely be Luna's best chance for a healthy future. But finding a liver that’s the right size for a toddler can be challenging – and take more time than some children have.

But there was another option: A split-liver transplant. And it's only available at a handful of hospitals in the country.

Saving two lives with one liver

Split-liver transplants are exactly what they sound like: splitting one liver into two pieces and giving them to two recipients. This is possible because the liver is a regenerative organ, meaning a piece of it can grow to full size, usually in just a month or two. In a split-liver transplant, an adult recipient typically gets about 60%-70% of the liver, and a child gets about 30%-40%.

Only about 10 of the 55 pediatric transplant programs in the country routinely do split-liver transplants. The surgery is very complex and Yong Kwon, M.D., Pediatric Transplant Surgeon at Children’s Health and Associate Professor at UT Southwestern, is one of just a handful of surgeons trained to do it. His expertise has helped the Children’s Health liver transplant waitlist drop from 19 active patients to 6.

Luna's and Rachel's transplants started with Dr. Kwon traveling to a hospital several hours away to procure and split the donated liver. The sooner new organs are transplanted, the better the outcomes. Planning and teamwork are essential. And the teams at Children’s Health and UT Southwestern were ready to give both Luna and Rachel a second chance at life.

"We trusted in our doctors and our faith"

When they first learned a liver might be available for Luna, Ashtin and Sam struggled with the decision.

"We were scared to death," Sam says. "At first, we were going to say no because we thought Luna was doing really well. But we understood it could turn back around. So, after we prayed and slept, we woke up and said, 'We should do it. It's the best shot she’s got right now.'"

The surgery went smoothly and the family was glad they proceeded with the transplant – especially when the doctors told her that her old liver was covered with scarring and infection.

"I'm glad we changed our minds because that could have been the turning point where she needed it and we could have messed it up," Sam says. "We trusted in our doctors and our faith."

Luna left the hospital the day before Thanksgiving with a "transplant walk" send-off, where caregivers line the hall and give a patient a standing ovation.

A real-life miracle

Rachel's transplant, performed by Parsia Vagefi, M.D., Executive Clinical Director of the Solid Organ Transplant Program at UT Southwestern, went well too. She was thrilled to learn that the same liver helped both her and little Luna and she describes organ donation "as the best miracle anyone could receive."

These days, Luna is full of big smiles. She loves playing house and blowing bubbles with her big sister, and proudly holding her baby sister, Octavia.

"Luna woke up from transplant and it was like a switch turned on," Ashtin says. "She started talking in sentences and running around. She gained over 10 pounds in less than a month. It's been awesome."

As Luna grows up, her family will have to teach her about her liver transplant and the medications she needs. But if all goes well, McConnell says Luna could easily have this liver for the rest of her life.

It's a life her parents are thankful for every day, and they hope to get the chance to express their gratitude to the donor's family soon.

"We are eternally grateful to the donor and donor's family for this amazing gift of life, to be able to watch our daughter’s life blossom as she grows," Ashtin says.

Learn more

The Pediatric Liver Disease Program at Children’s Health offers comprehensive treatment for pediatric liver disease, including the only pediatric liver transplant program in North Texas. Learn more about our program and services.

Become a donor

More than 100,000 people are waiting for life-saving organ transplants. Thousands die every year on waiting lists for transplants. Learn more about organ donation and register as a donor through Donate Life America.