Published online by Cambridge University Press: 20 July 2018
In the 1980s, sudden infant death syndrome (SIDS) in Norway made up half of all post-neonatal deaths, and more than 80% of all sudden unexpected deaths during the first year after birth. As in most Western countries, the rate of SIDS in Scandinavian countries dropped dramatically after 1990 (the era of safe sleep campaigns). Before 1990 the police attended the death scene following a sudden death in an infant, as in all other cases of sudden unexpected deaths, regardless of age. Due to massive criticisms from parents who felt incriminated, the Prosecutor General in 1991 withdrew the police from the scene of death in infants. Since the diagnosis of SIDS requires performance of a death scene investigation, an initiative was necessary. This chapter discusses SIDS in Scandinavia and the issues faced regarding death scene investigations.
Of the Scandinavian countries, Norway and Denmark were most severely hit by the SIDS epidemic in the 1980s (1). In Sweden and Finland the epidemic was less dramatic (1). As in all Western countries, the “this side up” campaign led to a dramatic drop in the SIDS rate. In Norway the SIDS rate has dropped from 2.4 per 1,000 live-born to 0.15 per 1,000 live-born in 2016 (Figure 20.1).
The SIDS epidemic: Real or due to a diagnostic shift?
The question as to whether the dramatic reduction in SIDS rate might partly be due to a change in diagnostic practice has been ruled out in Norway. Looking at the total post-neonatal mortality, there was an increase during the 1980s and a decline during the 1990s, in parallel with the drop in SIDS rates (Figure 20.2).
The SIDS Diagnosis
Since SIDS is a diagnosis of exclusion (2), it is necessary to perform an extensive autopsy, including comprehensive histology, microbiology, X-ray examination, toxicology, genetic testing, and metabolic screening before concluding that SIDS is the cause of death. It is also mandatory to perform a death scene investigation. In Norway all of these diagnostic tools, in addition to a CT scan, are included. Full metabolic screening is not yet operative. We do, however, perform testing for medium-chain acyl-CoA dehydrogenase deficiency (MCAD) mutation, and plan to add full metabolic screening in the future. The result of the autopsy is discussed in an interdisciplinary case conference and the final diagnosis given. The case conference also discusses whether the death could have been prevented.