Introduction

Over the last century human life expectancy has increased in many countries throughout the world. After World War II it was still accepted by the medical and scientific community that an infant could die suddenly and unexpectedly from no known cause (1). In the 1960s, this view began to be challenged and in 1963 and 1969 two international conferences were held to focus on the etiology of sudden infant death syndrome (SIDS), and the first working definition of SIDS was established (1).

However, given the overall decline in perinatal mortality during the last century due to medical advancements and higher standards of living, our societal expectations have changed. It has now become the norm that children will thrive and grow to outlive their parents, when 100 years ago this was frequently not the case. With our increased knowledge about how the human body functions and about how to prevent childhood diseases, it has become unthinkable that in the 21st century a healthy child would die in their sleep from SIDS, and yet this still happens to many families. Indeed, SIDS remains the leading cause of infant mortality in Western countries, contributing to half of all post-neonatal deaths (2, 3).

For any parent there could be no greater nightmare than the silent tragedy of SIDS. When a child's death is attributed to SIDS, a diagnosis of exclusion, the infant's death remains unexplained even after a thorough investigation, including performance of a complete autopsy and review of the circumstances of death and clinical history (4). It has been estimated by Red Nose that, on average, at least 60 people are impacted by a child's death to SIDS. The parents, siblings, and extended family are at the core of this experience, with friends, work colleagues, first responders, coroners, and health professionals included in the network of those impacted. SIDS communities have formed in every country as a result of these tragedies, often through the significant leadership and unrelenting passion of the families and individuals who have lived through the experience of SIDS. These families have embarked on a quest for answers as to why this tragedy happened to them, with their journey often involving activities undertaken in honor and memory of their beloved children.