National registry for sudden unexpected deaths of infants and children in England: why do we need one and do families want one?

Abstract

The sudden and unexpected death of an infant or child is devastating. An inability to explain why an infant or child died is difficult to accept for both families and professionals. No reliable national dataset exists to estimate precisely how many infants and children die unexpectedly each year in England. This lack of accurate epidemiological data belies the scale of this public health problem. Detailed controlled observational studies of infant deaths identifying risk factors and providing evidence-based advice for parents has seen a dramatic reduction in incidence over the last 30 years by almost 80% but greater knowledge is needed if future deaths of infants and older children are to be prevented and families optimally supported. We propose that a national registry of sudden unexpected deaths in infancy and childhood would accurately determine incidence, identify unknown risk factors and highlight good care practices, ensuring these can be standardised nationally. For such a project to be successful, however, parents must be at the heart of it. We held a consultation day between families, professionals and supporting charities (The Lullaby Trust, Child Bereavement UK, SUDC UK and CRY) to seek opinion on the desire for a registry and how best to ensure families are engaged. Here, we summarise our rationale for a registry and the feedback we received from attendees regarding their views of the proposal and the practical aspects of administering it.