Background: Kernicterus is a common cause of death and morbidity in many Low-
Middle-income Countries (LMICs) and still occurs in affluent nations. In either case, the immediate
cause is delayed treatment of severe hyperbilirubinemia. In the West, a provider
driven “systems approach” has been widely adopted to identify babies at risk prior to discharge
from birthing centers with follow up monitoring based on the serum bilirubin level at time of
discharge. The situation is more complicated in regions of the world where kernicterus is endemic,
especially in LMICs where Glucose-6-phosphate Dehydrogenase Deficiency (G6PDd)
is common and the system of jaundice management is often fragmented.
Objective: To examine reasons for errors in jaundice management leading to kernicterus and
the potential beneficial role of enlisting more parental participation in management decisions.
Method: We searched world literature related to pitfalls in jaundice management including deficiencies
in providers’ and parents’ knowledge and behavior. Perspectives from mothers of children with
kernicterus supplemented the literature review.
Result: System failures contributing to kernicterus in affluent countries include a lack of follow up
planning, bad advice by providers, and a delay in care seeking by parents. In many LMICs, the majority
of births occur at home with unskilled attendants. Traditional practices potentiate hemolysis in
G6PDd babies. The danger of severe jaundice is frequently underestimated both by parents and care
providers, and cultural and economic barriers as well as ineffective therapies delay care seeking. The
failure to provide parents information about identifying severe jaundice and knowledge about the
risks and treatment of hyperbilirubinemia has contributed to delayed treatment in both affluent and
low-middle-income countries. A recent non-randomized clinical trial, supports teaching all parents
skills to monitor jaundice, signs of early neurotoxicity, the importance of breast feeding, avoidance
of ineffective or dangerous practices, and when/where to seek help.
Conclusion: Empowering parents allow them to participate more fully in care decisions and to confront
obstacles to care when provider services fail.