Leta Saunders was just 2 weeks old when her eyes and skin began turning yellow. “She was like a banana,” recalls her mother, Debbie Kuntz. While many infants get jaundice, Leta’s didn’t go away. Diagnosed with hyperbilirubinemia, a condition that caused bile to back up into her body, Leta had surgery to attach her liver directly to her intestines just six weeks after birth. After years managing symptoms, Leta’s condition started to worsen. Dr. Vera Hupertz, a pediatric gastroenterologist, transplant hepatologist and medical director of hepatology and liver transplantation at Cleveland Clinic Children’s Hospital, told Kuntz her daughter needed a transplant. In November 2012, Leta received a reduced-size liver transplant from a living donor.
She spent eight months in the hospital [as a baby]. I was there with her every day. Those were months of ups and downs — being upset, worried, going crazy. But you have to just breathe through it.
She came home with a feeding tube. Eventually she started gaining weight and learning to walk, talk and eat. When she was 5, they took the feeding tube out. She was doing really well. But when she was 7, she started developing fluid in her stomach from a backflow from her liver. Every other week they drained 3 liters of fluid from her body. They told me that she needed a liver transplant, and I just broke down. It was only two weeks later that they did the transplant.
Because she was so small, they were able to give her part of a liver from a living adult donor, leaving enough behind for the donor to remain healthy. It meant that Leta was able to get a new liver faster than if she had to wait for an organ from a deceased donor.
For now, she’s cured, but I still worry that something’s going to happen. There’s no guarantee for anyone. She’s feeling good, just a normal 12-year-old. She kicked butt. My daughter is the biggest example that the gift of organ donation is amazing. — as told to Jennifer Keirn
Doc Says: “Taking care of children with liver disease now is more gratifying than it was 30 to 40 years ago,” says Dr. Vera Hupertz. “After getting a transplant, these children who were on all sorts of supplements and felt terrible, can start to feel like every other child their age. They will need to be on medications, possibly lifelong, but we expect them to go to school, play in the band, be athletes and eventually get a job. They can ‘live’ in every sense of the word.”
