This story was originally published in the Summer 2006 issue of Children's Hospital Neonatal News.
The stories of Nora and Lucy start years ago, but technology, fortitude and medical advances have brought them together. Born 13 years apart, their lives interesect in their experiences with The Children's Hospital of Philadelphia's Newborn/Infant Center and Liver Transplant teams. Nora's and Lucy's stories illustrate how far we have come in our ability to transplant even the smallest babies and help them live normal, healthy lives.
Nora was born slightly premature more than 13 years ago. Within her first hours, she developed respiratory distress and was transferred to Children's Hospital, where physicians identified liver failure caused by echovirus.
Nora was younger and smaller than any child ever transplanted in the region, and among the youngest attempted worldwide. Still, her team at Children's Hospital knew she couldn't live without a transplant and was determined to help.
When Nora received a new liver at 13 days of age, she became the first liver transplant in the Children's Hospital Newborn/Infant Center. She recovered quickly and went home one month later.
Today, Nora is like any other eighth grader who excels in school.
Lucy was born in August 2005 at barely 32 weeks' gestation and was transferred to Children's Hospital at 5 days of age with liver failure and multisystem organ failure. During her time at Children's Hospital, Lucy received care from the multidisciplinary liver team and related programs. The neonatal liver GI team determined her treatment plans during daily rounds, and infectious disease experts consulted on her enteroviral sepsis. Nutrition services coordinated her feedings.
When Lucy received a liver at 5 months and 3.4 kg, she was the first successful premature infant transplant in the Children's Hospital Newborn/Infant Center.
During her seven-month hospitalization, attending neonatologists and nursing teams provided her with continuity of care. Through it all, social workers and case managers offered Lucy's family help with everything from insurance and housing to counseling and transportation.
After her transplant, Lucy received physical and occupational therapy to help speed her recovery, and her care providers gradually simplified her medical regimen.
Lucy's initial condition would have been hopeless only a few years ago, but with expert care, advances in technology and Children's Hospital's multidisciplinary approach, she lived long enough to receive a successful transplant. She now has been home for several months with her parents and 3-year-old brother.
Since 1995, Children's Hospital and its next-door neighbor, the Hospital of the University of Pennsylvania, have conducted a joint liver program under the leadership of transplant surgeons Abraham Shaked, MD, and Kim Olthoff, MD, and hepatologist Elizabeth B. Rand, MD.
For Children's Hospital, the affiliation provides an opportunity to draw upon the experience of one of the nation's largest adult programs.