Maternal Empowerment – an underutilized strategy to prevent kernicterus?

Abstract
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. System failures contributing to kernicterus in affluent countries are related to lack of follow up planning, bad advice by providers, and delays in care seeking by parents. 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. Here, the system of jaundice management is more fragmented, home births with unskilled attendants frequently dominate, traditional practices potentiate hemolysis in G6PDd babies, the danger of jaundice is not understood, and cultural and economic barriers as well as ineffective therapies delay care seeking. This review summarizes pitfalls in jaundice management, examines deficiencies in providers' and parents' knowledge and behavior, and suggests that a failure to provide parents information about kernicterus may contribute to its occurrence. Existing evidence, though lacking randomized clinical trials, 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. Empowering parents allows them to participate more fully in care decisions and to confront obstacles to care when provider services fail.