Introduction

In 2010, a publication reviewing the contemporary state of paediatric organ donation in the UK was published in this journal.1 At the time, there was little antecedent data or practical consideration of this in the literature or indeed from national bodies tasked with improving and saving lives through organ donation and transplantation. In the intervening period, much of the infrastructure to facilitate organ donation has been addressed as part of national drives. Significant and specific child health-targeted actions such as guidance on the diagnosis of death using neurological criteria in neonates created the potential for donation after brain death (DBD).2 Additionally, publications from the now disbanded UK Donation Ethics Committee (UKDEC) on donation from children3 4 and guidance from the National Institute for Health and Care Excellence (NICE) determined organ donation to be part of or included in routine end of life care at all ages.5 The Royal College of Paediatrics and Child Health (RCPCH) has also included organ donation considerations prominently in its latest ethical and legal framework ‘Decisions to Limit Therapy’.6 However, the overall increase in donation rates seen across the general population over this period has not been replicated in children, with rates remaining static (figure 1).

More recently, National Health Service Blood and Transplant (NHSBT) has commissioned a paediatric subcommittee of the National Organ Donation Committee, and donation after circulatory definition of death (DCD) from babies has now occurred in several neonatal and paediatric units, including from a number of babies affected by anencephaly.

This paper reviews national data on organ donation from children in the UK, paediatric unit-specific performance variations and the impact of these various interventions on organ donation from children and identifies areas for future improvement. …