Book contents
- Frontmatter
- Contents
- Dedication
- Acknowledgements
- Foreword
- 1 Sudden Infant Death Syndrome: Definitions
- 2 Sudden Infant Death Syndrome: An Overview
- 3 Sudden Unexplained Death in Childhood: An Overview
- 4 Sudden Infant Death Syndrome: History
- 5 Responding to Unexpected Child Deaths
- 6 The Role of Death Review Committees
- 7 Parental Perspectives
- 8 Parental Grief
- 9 Promoting Evidence-Based Public Health Recommendations to Support Reductions in Infant and Child Mortality: The Role of National Scientific Advisory Groups
- 10 Risk Factors and Theories
- 11 Shared Sleeping Surfaces and Dangerous Sleeping Environments
- 12 Preventive Strategies for Sudden Infant Death Syndrome
- 13 The Epidemiology of Sudden Infant Death Syndrome and Sudden Unexpected Infant Deaths: Diagnostic Shift and other Temporal Changes
- 14 Future Directions in Sudden Unexpected Death in Infancy Research
- 15 Observational Investigations from England: The CESDI and SWISS Studies
- 16 An Australian Perspective
- 17 A South African Perspective
- 18 A United Kingdom Perspective
- 19 A United States Perspective
- 20 A Scandinavian Perspective
- 21 Neonatal Monitoring: Prediction of Autonomic Regulation at 1 Month from Newborn Assessments
- 22 Autonomic Cardiorespiratory Physiology and Arousal of the Fetus and Infant
- 23 The Role of the Upper Airway in SIDS and Sudden Unexpected Infant Deaths and the Importance of External Airway-Protective Behaviors
- 24 The Autopsy and Pathology of Sudden Infant Death Syndrome
- 25 Natural Diseases Causing Sudden Death in Infancy and Early Childhood
- 26 Brainstem Neuropathology in Sudden Infant Death Syndrome
- 27 Sudden Infant Death Syndrome, Sleep, and the Physiology and Pathophysiology of the Respiratory Network
- 28 Neuropathology of Sudden Infant Death Syndrome: Hypothalamus
- 29 Abnormalities of the Hippocampus in Sudden and Unexpected Death in Early Life
- 30 Cytokines, Infection, and Immunity
- 31 The Genetics of Sudden Infant Death Syndrome
- 32 Biomarkers of Sudden Infant Death Syndrome (SIDS) Risk and SIDS Death
- 33 Animal Models: Illuminating the Pathogenesis of Sudden Infant Death Syndrome
7 - Parental Perspectives
Published online by Cambridge University Press: 20 July 2018
- Frontmatter
- Contents
- Dedication
- Acknowledgements
- Foreword
- 1 Sudden Infant Death Syndrome: Definitions
- 2 Sudden Infant Death Syndrome: An Overview
- 3 Sudden Unexplained Death in Childhood: An Overview
- 4 Sudden Infant Death Syndrome: History
- 5 Responding to Unexpected Child Deaths
- 6 The Role of Death Review Committees
- 7 Parental Perspectives
- 8 Parental Grief
- 9 Promoting Evidence-Based Public Health Recommendations to Support Reductions in Infant and Child Mortality: The Role of National Scientific Advisory Groups
- 10 Risk Factors and Theories
- 11 Shared Sleeping Surfaces and Dangerous Sleeping Environments
- 12 Preventive Strategies for Sudden Infant Death Syndrome
- 13 The Epidemiology of Sudden Infant Death Syndrome and Sudden Unexpected Infant Deaths: Diagnostic Shift and other Temporal Changes
- 14 Future Directions in Sudden Unexpected Death in Infancy Research
- 15 Observational Investigations from England: The CESDI and SWISS Studies
- 16 An Australian Perspective
- 17 A South African Perspective
- 18 A United Kingdom Perspective
- 19 A United States Perspective
- 20 A Scandinavian Perspective
- 21 Neonatal Monitoring: Prediction of Autonomic Regulation at 1 Month from Newborn Assessments
- 22 Autonomic Cardiorespiratory Physiology and Arousal of the Fetus and Infant
- 23 The Role of the Upper Airway in SIDS and Sudden Unexpected Infant Deaths and the Importance of External Airway-Protective Behaviors
- 24 The Autopsy and Pathology of Sudden Infant Death Syndrome
- 25 Natural Diseases Causing Sudden Death in Infancy and Early Childhood
- 26 Brainstem Neuropathology in Sudden Infant Death Syndrome
- 27 Sudden Infant Death Syndrome, Sleep, and the Physiology and Pathophysiology of the Respiratory Network
- 28 Neuropathology of Sudden Infant Death Syndrome: Hypothalamus
- 29 Abnormalities of the Hippocampus in Sudden and Unexpected Death in Early Life
- 30 Cytokines, Infection, and Immunity
- 31 The Genetics of Sudden Infant Death Syndrome
- 32 Biomarkers of Sudden Infant Death Syndrome (SIDS) Risk and SIDS Death
- 33 Animal Models: Illuminating the Pathogenesis of Sudden Infant Death Syndrome
Summary
Introduction
“You can stop resuscitating; leave the notes on my desk.”
Back in the early 2000s, when I was a junior pediatrician, this was the typical advice that I would receive from my seniors when I was dealing with a case of sudden unexpected death in infancy (SUDI) in the Emergency Department; it was considered appropriate for junior staff to manage SUDI without direct consultant support. Parents would usually be offered an outpatient appointment with a consultant pediatrician some weeks later to discuss the results of the post-mortem examination, but few families attended as they had never met the consultant beforehand. Bereaved parents described saying goodbye to their dead infant in the Emergency Department, leaving the hospital, and never receiving any further information from medical staff about the possible reasons for the death. As a junior doctor, I felt that this process was wrong and that families deserved better care; thankfully, during the next few years the management of SUDI changed dramatically in England.
In 2008, a new joint agency approach (JAA) to investigating SUDI was introduced in England (1); this approach aimed to establish the complete causes for death, including any risk factors, and to address the needs of the family, including the need to safeguard other children. Professionals therefore have to balance the need to forensically investigate the cause of death and offer appropriate support to bereaved families (2). The JAA has been described in detail in Chapter 5, but is summarized here. Police, health, and social care jointly investigate deaths following national statutory guidance (2). The investigation is led by experienced pediatricians and the police response is provided by specialist teams with particular expertise in managing child death and child safeguarding enquiries. Key elements include taking the deceased infant to an Emergency Department, a pediatrician (possibly accompanied by the police) taking a detailed medical history from the parents, a joint examination of the scene of death by police and pediatrician, and follow-up for the parents. There is inter-agency communication throughout the JAA with a case conference to discuss the full causes of death. The process of the JAA is shown in Figure 7.1. Despite statutory guidance, the practice of joint police and pediatric examination of the scene of death is still variable, and often police examine death scenes alone.
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- SIDS Sudden Infant and Early Childhood DeathThe past, the present and the future, pp. 123 - 142Publisher: The University of Adelaide PressPrint publication year: 2018