Six-year-old Ariana recently began cyber school, and she loves it. Her mother, Maria, was not sure she’d ever reach this milestone. Maria was sick when she gave birth and couldn’t see her daughter for four days. When she did, Maria found Ariana severely jaundiced. Ariana was in the NICU for testing and care that lasted nearly a month.
Ariana was soon diagnosed with juvenile nephronophthisis. Her kidneys were not working, and she needed dialysis. Her care team placed a central line in Ariana to facilitate lab work, shaved her head to place IVs, performed a bone marrow biopsy, and put a peritoneal dialysis port in her belly for home dialysis. That day, Ariana went into cardiac arrest. She was two months old. “I thought I was going to lose my child,” said Maria. Ariana was on a ventilator for two weeks and in the PICU for nearly two months.
For the next two years, Ariana received her care at the same hospital. Then, Maria noticed that Ariana developed a heavy cough in the middle of the night.
“I put my hand on her back, and she threw up large blood clots,” Maria said. “Our local pediatric hospital didn’t have a liver specialist, so they sent me to a second children’s hospital for testing. There I was informed that Ariana needed a new kidney and would require a liver transplant when she was older. But something didn’t feel right to me. My gut told me I needed to take her somewhere else.”
By then, Ariana was 3 years old, still on dialysis, and had developed an intense itch. So her doctor started Ariana on a new medication to combat high phosphate levels. Just a few afternoons after taking the prescription, Ariana asked her mother why she had turned the lights off. She told Maria that she could not see. They returned to their hospital, where an eye specialist examined Ariana and informed Maria that her daughter had gone blind due to kidney disease.
“I was devastated and still didn’t have a clear answer as to why my daughter was throwing up blood,” said Maria. “One of Ariana’s nurses — an angel, really — took me aside and told me to do my research but to take her to Nemours Children’s.
“Dr. Dunn touched Ariana’s belly and said, ‘Oh, yes — Ariana needs a liver transplant.’ He left the room and returned with kidney and liver transplant papers for my husband and me to review. I burst into tears and hugged my daughter while my husband signed the papers.”
After her transplant, Ariana’s skin color normalized, her eyes were no longer neon yellow, and her itching ceased. Maria calls it a complete U-turn.
“Now she eats everything, loves to ride her bike, play dress up and LEGOs, jumps on the trampoline — these are all activities she couldn’t do before the transplant,” said Maria. “Ariana loves to socialize with people and asks them questions about everything. She is a brand-new child! We can’t thank Dr. Dunn and the transplant team enough.”