Background Most deaths in severely brain-injured newborns in neonatal intensive care units (NICUs) follow discussions and explicit decisions to limit life-sustaining treatment. There is little published information on such discussions.

Objective To describe the prevalence, nature and outcome of treatment limitation discussions (TLDs) in critically ill newborns with severe brain injury.

Design A retrospective statewide cohort study.

Setting Two tertiary NICUs in South Australia.

Patients Ventilated newborns with severe hypoxic ischaemic encephalopathy and periventricular/intraventricular haemorrhage (P/IVH) admitted over a 6-year period from 2001 to 2006.

Main outcome measures Short-term outcome (until hospital discharge) including presence and content of TLDs, early childhood mortality, school-age functional outcome.

Results We identified 145 infants with severe brain injury; 78/145 (54%) infants had documented TLDs. Discussions were more common in infants with severe P/IVH or hypoxic–ischaemic encephalopathy (p<0.01). Fifty-six infants (39%) died prior to discharge, all following treatment limitation. The majority of deaths (41/56; 73%) occurred in physiologically stable infants. Of 78 infants with at least one documented TLD, 22 (28%) survived to discharge, most in the setting of explicit or inferred decisions to continue treatment. Half of long-term survivors after TLD (8/16, 50%) were severely impaired at follow-up. However, two-thirds of surviving infants with TLD in the setting of unilateral P/IVH had mild or no disability.

Conclusions Some critically ill newborn infants with brain injury survive following TLDs between their parents and physicians. Outcome in this group of infants provides valuable information about the integrity of prognostication in NICU, and should be incorporated into counselling.