September 22, 2018 was a special day for Briana. This was the day that the Orange County, N.Y., resident gave birth to her first child, Liliana. Two weeks after giving birth, Briana noticed that Liliana’s stomach was distended, even though she was eating and functioning as a normal newborn baby.

After taking Liliana to a specialist, Briana and her husband, Stephen, learned through an ultrasound that their new baby was born with a large mass in her abdomen that was lying next to multiple major organs, including her right kidney. The large mass turned out to be a teratoma, a type of tumor that can contain several different types of tissues, such as hair, muscle, and bone, and had the potential to become cancerous.

When Liliana was five weeks old, she underwent an exploratory surgery in Albany, N.Y., to remove the large mass, which doctors successfully were able to do. Liliana recovered well until her body went into shock due to a blood clot.

“The blood clot deprived blood from some of her organs on the right side of her body since they were so close to one another,” said Briana. “She lost half of her liver, right kidney, spleen, and most of her small bowel, and she was intubated for 29 days.”

Finding Specialized Care

Briana and Stephen decided they wanted Liliana to have more specialized care and reached out to a few hospitals, including UPMC Children’s Hospital of Pittsburgh. The family was airlifted to Pittsburgh a few days before Thanksgiving, where Liliana was extubated, and then five weeks later underwent a 13-hour surgery by surgeon Geoffrey Bond, MD, and the UPMC Children’s gastrointestinal (GI) team. The team attempted to reconnect her intestinal tract, but they found that she mostly had dead tissue.

Once Liliana and family arrived home to New York in early January, she began total parenteral nutrition (TPN), a method of feeding that bypasses the GI tract through a special formula given through a vein, for 24 hours a day. When she learned how to walk, she learned how to do so with a backpack that carried her pump and fluids.

Liliana’s health started to improve, and she continued to see her doctors at UPMC Children’s as well as in Albany for close monitoring. The family welcomed a baby boy, Lucien, in September 2020.

The Path to Living-Donor Kidney Transplant at UPMC

After a biopsy of her right kidney in February 2021, Liliana’s doctors in Albany found that it was damaged and had 20% function, which meant that she had six months to find a living-kidney donor, or else she would have to start dialysis.

“She wasn’t even three years old yet, so going on dialysis really wasn’t an option for her,” said Briana. “Once UPMC Children’s agreed that she could go through the living-kidney donor process, Stephen and I both got tested.”

Luckily, Briana was a match for her daughter, and the transplant occurred on August 31, 2021.

Briana noted that she and her family “knew that Liliana was in the best of hands at UPMC Children’s.”

The UPMC Children’s kidney transplant program specializes in the care of small pediatric transplant recipients with complex abdomens with previous surgeries and small vasculature.

“I was incredibly happy and felt so blessed that I was a match for Liliana since she had so many other things up against her. The transplant team at UPMC Children’s is incredible. They fully prepared myself and Liliana for the surgeries and set us up for success through constant communication and detailed planning. Although I was discharged the next day, I didn't go to see Liliana in the hospital for five days because I was told I had strict orders to not push myself. When I walked in and saw her for the first time after surgery, she was climbing up and down the bed, practically running circles around me,” said Briana.

Life After Kidney Transplant

Liliana, now four, is now able to be off TPN for eight hours a day, which allowed her to begin pre-K in September 2022, and Briana, who is now a mother of three, is training for a half marathon. Liliana and family continue to see UPMC Children’s gastrointestinal and kidney specialists in-person or virtually every other month, and she is due to be placed on the waiting list within the next few months for a small bowel transplant.

“Now that Liliana doesn’t need to be hooked up to her infusion 24 hours a day, she is able to go to school and live as normal of a toddler life as possible,” said Briana. “She just loves it. Liliana would probably run next to me in the marathon if I let her! She is the sweetest, most loving little girl and the strongest human being I know.”

Briana and Liliana’s treatment and results may not be representative of all similar cases.