Kernicterus is a preventable rare clinical condition occurring in the first weeks of life in the newborn population. Excess bilirubin in the bloodstream crosses the blood/brain barrier staining & damaging neurological tissues in the brain, resulting in significant and permanent brain damage or death in newborns. In the early 1990’s cases began to be reported again after many decades of few reports. It became normalized to expect jaundice- yellowing of the skin and sclera of the eyes due to high levels of bilirubin in the bloodstream. As 80% of newborns experience some degree of jaundice peaking at 3-5 days of life, there was gradually less concern and clinical monitoring of the jaundice. Although the frequency of hyperbilirubinemia progressing to kernicterus is small and not definitively identified, there are a sufficient volume of reported cases now in the U.S. that most pediatric neurologists report having seen at least one case in their practice.
A grassroots parental organization, P.I.C.K. (Parents of Infants & Children with Kernicterus) was organized in late 2000 in the U.S. to increase awareness, treatment & prevention of kernicterus. The group’s operational model is to partner actively with healthcare institutions with the goal to achieve universal predischarge bilirubin screening. P.I.C.K. estimates the lifetime cost of caring for one child with kernicterus to be $10 to $25 million dollars. The cost of one predischarge bilirubin screen is ~$1.00. The P.I.C.K. 7-minute DVD conveys very effectively the extent of potential injury to a child with kernicterus, the lifetime effects for a family, and the relatively simple preventive measures [1]. As a result of P.I.C.K.’s work, the Joint Commission issued two Sentinel Event Alerts pertaining to kernicterus. The first in 2001 was to stress that kernicterus threatens healthy newborns in the U.S. [2]. The second alert in 2004 referenced the American Academy of Pediatrics guidelines for the management of hyperbilirubinemia recommending two approaches- individual newborn risk assessment and/or universal predischarge bilirubin screening [3]. The two approaches can be utilized individually or together [4]. In January of 2005 the Joint Commission announced any bilirubin value ³ 30 was a Sentinel Event.
The recommended clinical practice change is to standardize universal predischarge bilirubin screening at 36 hours of age paired with individual newborn risk assessment to monitor bilirubin levels and intervene with treatment and follow up as indicated to prevent kernicterus.
Early Providence Health & Services Oregon Region data suggest an inverse relationship between universal screening rates and the number of children who test with bilirubin in the higher value cohorts at some point in the early newborn period. Additionally, our data from Providence St Vincent Medical Center shows that prior to universal screening the incidence of children re-admitted with a bilirubin greater than 20 was 1:277 and after the screening was implemented was 1:641 while readmissions with a bilirubin greater than 25 changed from 1:929 to 1:3846. Data from 2007 is currently available for review. Data from 2008 will be available by next Spring prior to the conference.