Sava – Living-Donor Liver Transplant Patient Story

A Rare Diagnosis

A routine visit to the pediatrician revealed Sava’s rare liver disease. With no outward symptoms, his family was surprised to learn that their four-month-old’s liver was enlarged. Several weeks of additional testing and exams confirmed a diagnosis of Alfa-1 antitrypsin, a genetic disease that can cause blood vessel inflammation and lung, liver, and skin problems.

Doctors informed Sava’s family that a liver transplant was the only option to save his life as his disease progressed. Since they were equipped with this knowledge early on, they had time to discuss transplant with their family and friends and research Sava’s care.

From Montenegro to UPMC Children’s Hospital of Pittsburgh

As Sava’s symptoms worsened over the years to include high bilirubin, varicose veins, and liver cirrhosis, the family traveled to Belgrade, Serbia, from their home in Montenegro to seek treatment. Sava’s father Aleksandar continued to research the best care for his son and noted that UPMC Children’s Hospital of Pittsburgh consistently appeared at the top of his search results for living-donor liver transplantation.

“We saw the United States’ national ranking of children’s hospitals, and UPMC Children’s was one of the best,” said Ivona, Sava’s mother. “We made contact with them and arranged our visit.”

Family members were eager to help Sava and began the living donor evaluation process.

“I was the first one to do the testing, but I was not able to donate because I had a previous surgery that disqualified me,” said Ivona. “Both of my sisters were more than happy to donate their liver to Sava, and my sister Nela was the next one to be tested.”

Sava’s aunt Nela was a match, and his living-donor liver transplant occurred in January 2020. He remained in Pittsburgh for five months before returning home to Montenegro, and he and his aunt are doing well in their recoveries.

“Sava was very sick when he got to UPMC, and we lived in fear for so many years. But when we came to UPMC, we felt safe,” said Ivona. “The doctors and medical staff showed exceptional expertise and gave us so much support, understanding, and empathy. Most important, they did an exceptional job in making Sava a healthy child.”

Dedicated Support During Recovery and Beyond

Sava’s stay in Pittsburgh overlapped with the beginning of the COVID-19 pandemic, so the family had to be cautious in their activities. While this limited their interactions with people outside of the medical setting, it fostered close relationships with Sava’s transplant team.

“Everybody was so loving and professional, but Dr. George Mazariegos led the team of doctors doing the transplant and is the dearest to our hearts,” said Ivona. “Mariace, our coordinator, made us feel at home, and we are very grateful for that.”

As Sava continued to recover physically, Ivona noted that he also seemed to feel better emotionally.

“His life was changed to a huge extent, as he could go out and play with his friends, do sports, and do all the other stuff kids do without the fear of something frightening happening to him,” she said.

Sava returns to Pittsburgh yearly for follow-up visits and enjoys reuniting with his care team and spending time at the city’s museums and parks. Back home, he enjoys sports and socializing with his friends.

“He is an excellent student with a lot of interests,” said Ivona. “Thanks to the medical team at UPMC, he can do it all.”