In August 2021, during Riley’s routine 4-month check-up, her pediatrician noticed something concerning—an enlarged spleen on physical exam and jaundice (yellowing of the eyes). Little did Riley’s parents know this discovery would set them on an unexpected and challenging path. They were referred to Nemours Children’s Hospital, Delaware for further examination.
After ultrasounds and bloodwork, the doctors made a startling revelation. Riley’s liver was also enlarged, and her bilirubin levels were high. She was admitted to the hospital, where a liver biopsy and other tests led to a diagnosis of congenital biliary atresia. Unfortunately, due to the late referral, the diagnosis came too late for a preemptive (or palliative) procedure, and the transplant team concluded that a liver transplant was Riley’s best option.
Before this diagnosis, Riley’s life had been blissfully unaffected; she was a typical happy and smiley 4-month-old baby with a small Buddha belly. However, from August to December 2021, her and her family’s lives were filled with hospital visits, clinic appointments, and challenging health battles.
During those months, Riley and her parents made frequent trips to Nemours Children’s for check-ups and consultations with Dr. Adebowale Adeyemi. They witnessed her numbers deteriorate, faced a tough battle with RSV, and discovered difficulties in her food digestion. These hurdles led to hospital admissions, feeding tube placement, encounters with rhinovirus, and a possible staph infection. Her health was fragile, and her liver function (numbers) kept declining.
That November, Riley’s condition worsened, and she was intubated with a large central IV line placed in her neck. This intensive treatment included high-volume plasma exchange and dialysis to keep her alive until a suitable liver donor was found.
Riley’s transplant day arrived on December 3, 2021, just two days after National Biliary Atresia Awareness Day. It was a timely gift, and the surgery marked a turning point in her life and the lives of her parents. The resilience and determination of their little warrior had prevailed.
Over a year and a half has passed since Riley’s transplant, and the journey to recovery continues. Physical therapy sessions, battles with RSV and COVID-19, and adjusting to a new normal have become a part of her life. The transplant team at Nemours Children’s remains a constant source of support and guidance for Riley and her family.
“Our advice to any parent who might be going through this is to take every moment for what it is,” says Riley’s family. “It is not an easy thing to do as a parent, watching your child get even more sick by the day and not being able to help them. You feel useless, you question your parenting skills, you question a lot of things. The best thing you can do is to do your best to stay positive and be there for your child and your spouse.”
