SIDS is not a disease entity

The sudden infant death syndrome (SIDS) is not a disease entity.¹ It is a description of an outcome, a term used to acknowledge a failure to make a diagnosis. The value of the term is that it informs us that no blame is apportioned to the carer. The weakness is that it implies that we understand more than we do. The new term SUDI, or sudden unexpected death in infancy, is unfortunate in that it would have been better if the U stood for “unexplained” rather than “unexpected.”

It is important to understand that while parents are usually blameless for the death, they may still be partly responsible. For example, a whole generation of parents laid their babies face down in the cot, believing that they were doing the best. If the parents have contributed to the cause of death we do them a disservice by not saying so.

We know the major risk factors that predispose to cot deaths. These do not strictly cause the death but make it more probable. We could do more to understand these triggers and the mode of death.

A cot death is almost never observed, which suggests that, had appropriate action been taken, the death would have been avoided. From time to time paediatricians see babies who seem to be on the point of death. Some have respiratory infections. They perk up with oxygen, and then seem only to have minor illnesses, hypoxia causing a vicious cycle of under breathing. We see similar recoveries in some babies with gastroenteritis when given intravenous fluids. If these babies had been unobserved at night and had died, I doubt that the pathologist would have recognised the severity of illness that these seemingly minor infections had induced.

The Care of the Next Infant scheme could devise a comprehensive surveillance of infants at risk that included loop video recording, heart rate monitoring, perhaps other monitoring and an alarm that would both alert the parent and also provide a record of the event so that we might both avoid the death and better understand the process.