Purpose To develop a comprehensive database looking into the outcomes of small/preterm neonates with congenital heart disease. The aim being to establish patterns of pathology, treatment and outcomes.

Methods The national neonatal database (Badgernet) was searched for all babies born in/treated at Leeds General Infirmary or the tertiary neonatal unit in Sheffield, who had a diagnosis of congenital heart disease (excluding PDA’s) and who were born at less than 36 weeks and/or weighing less than 2.5 kg from 01/01/2014 to 31/12/2016. Data was collected on cardiac diagnosis, reasons for prematurity, mortality; including cause of death, subsequent cardiac intervention, comorbidities, non-cardiac surgery, hospital stay, ventilation time and overall neonatal stay including line issues, sepsis, weight gain etc.

Results We collected data on 194 neonates. The earliest gestation being 23 weeks and the smallest weighing 520 g. The reasons for delivery were preterm labour, maternal factors or fetal distress. 27% (53) of the neonates died (range day 0 to 2 years). The reasons for death varied from planned palliation (mainly due to non-cardiac comorbidity) to acute collapse and mainly preceeded cardiac intervention. In the patients who died the majority had multiple significant comorbidities.

Conclusion There is a high rate of mortality in neonates with congenital heart disease born prematurely or very small and requiring neonatal intensive care. Those that do survive often have a long and complex admission prior to definitive cardiac treatment. This information helps inform families and assists clinicians when counselling and treating these neonatal families.