Raised bilirubin or hyperbilirubinaemia or severe neonatal jaundice is the most common cause of morbidity in the first week of life worldwide. This has been known for years and is one of the most preventable causes of morbidity and mortality in babies. Yet, it still persists. Why does this continue to be the case?
The incidence of neonatal jaundice is difficult to estimate in both high income and low-middle income countries (LMICs). This is particularly so in LMICs due to lack of data collection and reporting, with most of the collection carried out in silos. Furthermore, LMICs lack standardized protocols for hyperbilirubinaemia classification. Poor data collection and organization means the magnitude of the problem cannot be captured. Therefore, interventions such as universal neonatal jaundice risk assessment and screening, as well as treatment do not receive as much importance.
The burden of neonatal jaundice, and more importantly kernicterus (permanent brain damage as a result of high bilirubin levels) is high in Sub-Saharan Africa and South-East Asia - a reflection of weak health systems. Weak health systems with poor resources also means there is difficulty establishing universal screening programs and in making treatment available such as Rhesus immunoglobulin and phototherapy.
Dr Tina Slusher and colleagues who are currently looking into ways to treat neonatal jaundice using sunlight (see previous blog), have also explained why kernicterus still remains a major cause of death and disability in LMICs. They use Thaddeus and Maine’s framework which was initially published in the context of why mothers died during childbirth. They called the framework ‘the three delays’. Dr Slusher and colleagues use the same framework to explain why kernicterus continues to be such a big problem.
Firstly, there is delay in seeking appropriate care. Awareness of the symptoms of neonatal jaundice as well as financial and sociocultural factors can be barriers to seeking appropriate care. Mothers need to be aware of the symptoms and signs of this illness to contemplate taking their baby to a health professional. They have to be aware of the early signs in order for kernicterus to be prevented. They usually seek help from a doctor when their baby is lethargic or irritable which is often too late. It is also the mother who has to take their child to the doctors, which can be difficult when they are caring for other children or have to run the household. In addition, their husband’s permission has to be sought.
The second part of the framework highlights the delay in presenting at an appropriate health facility. Due to financial and/or geographical constraints, mothers will go to a clinic that is the easiest for them (when considering those two factors), but the clinic they choose to go to may not be equipped to deal with their baby’s health problems. Parents usually have tried another clinic or hospital before finding somewhere that can treat their baby, delaying treatment even further. In addition, mothers, particularly those living in rural areas will go to a traditional healer first, who are not only trusted by the community but are also cheaper.
The third part of the framework highlights the delay in receiving appropriate and adequate care at an appropriate health facility. Poor resources (electricity, medications, equipment), shortages in workforce, lack of appropriate clinical guidelines (which would include guidance on treatment and monitoring), lack of available treatment, and poor rehabilitation for those infants who have permanent neurological damage exacerbates the problem.
Improving outcomes in infants with neonatal jaundice requires interventions targeted at each part of this framework. This includes improving maternal awareness for early identification, ensuring financial and geographical access to health services, and improving health system infrastructure and quality. In addition to this, neonatal blood testing and screening is incredibly important in order to pick up cases early, and low-cost, simple innovations to measure and treat high bilirubin are urgently required. Lastly, political will to invest in screening programs, health technology and health systems is required in order to reduce the burden of such a preventable condition.
Dr. Daniel Kimani is a trained and licensed medical officer in Kenya, holding a Bachelor of Medicine & Surgery, and a post-graduate certificate on basic oncology training. Dr. Kimani is the founder of the Global Cancer Care and Research Institute, and is an expert in clinical colposcopy — a procedure to examine the cervix, vagina, and vulva.