Bilirubin Encephalopathy/Kernicterus and the Newborn Infant: Implications for Life Care Planning

Bilirubin encephalopathy, also known as kernicterus, is caused by high bilirubin levels in early infancy and results in neurotoxicity that can lead to irreversible life-long brain damage. An increasing number of these cases are being identified in infants and children and some of these cases have been sources of litigation. This article will identify risk factors in infants with high bilirubin levels as well as discuss current practice guidelines noted by the American Academy of Pediatrics (AAP). Additionally, recommendations by the Joint Commission on Accreditation of Healthcare Organizations (JCAHO) will be discussed. Finally, implications for the life care planner in developing life care plans for children with kernicterus will be discussed.