End-of-Life Care and Survival without Major Brain Damage in Newborns at the Limit of Viability

Abstract

Background: The probabilities of survival and survival without major brain damage (MBD) are low in newborns at the limit of viability. Survival without MBD constitutes a major concern for parents and professionals. Objectives: To know the probabilities of survival without MBD in newborns ≤26 weeks' gestational age (GA) relative to the total number of survivors, whether these probabilities vary with GA, and how end-of-life (EoL) decisions influence these results. Methods: We included all live-inborn patients of 22-26 weeks' GA, without major congenital anomalies, born in collaborating centers of the Spanish SEN1500 Network (2004-2010). MBD was defined as the presence of severe intraventricular hemorrhage and/or periventricular leukomalacia. Results: A total of 3,371 patients were born alive, 3,236 of whom were admitted to the neonatal intensive care unit (NICU). Survival without MBD was 44.4% among patients admitted to the NICU, increasing from 12.5% at 22 weeks to 57.9% at 26 weeks' GA. The proportion of survivors without MBD relative to the total number of survivors was 81.1%, and it was independent of GA. EoL decisions preceded one-third of all deaths and were more frequent among the most immature patients. Conclusions: The proportion of survivors without MBD, when referred to the total number of survivors, is relatively high and is independent of GA. EoL decisions after the occurrence of MBD seem to play an important role in this respect. These results support the attitude of “giving an opportunity” even to the most immature patients, if this is in accordance with the parents' wishes.