Evaluation of Concordance Between Original Death Certifications and an Expert Panel Process in the Determination of Sudden Unexplained Death in Childhood.

Importance: The true incidence of sudden unexplained death in childhood (SUDC), already the fifth leading category of death among toddlers by current US Centers for Disease Control and Prevention estimates, is potentially veiled by the varied certification processes by medicolegal investigative offices across the United States. Objective: To evaluate the frequency of SUDC incidence, understand its epidemiology, and assess the consistency of death certification among medical examiner and coroner offices in the US death investigation system. Design, Setting, and Participants: In this case series, 2 of 13 forensic pathologists (FPs) conducted masked reviews of 100 cases enrolled in the SUDC Registry and Research Collaborative (SUDCRRC). Children who died aged 11 months to 18 years from 36 US states, Canada, and the United Kingdom had been posthumously enrolled in the SUDCRRC by family members from 2014 to 2017. Comprehensive data from medicolegal investigative offices, clinical offices, and family members were reviewed. Data analysis was conducted from December 2014 to June 2020. Main Outcomes and Measures: Certified cause of death (COD) characterized as explained (accidental or natural) or unexplained, as determined by SUDCRRC masked review process. Results: In this study of 100 cases of SUDC (mean [SD] age, 32.1 [31.8] months; 58 [58.0%] boys; 82 [82.0%] White children; 92 [92.0%] from the United States), the original pathologist certified 43 cases (43.0%) as explained COD and 57 (57.0%) as unexplained COD. The SUDCRRC review process led to the following certifications: 16 (16.0%) were explained, 7 (7.0%) were undetermined because of insufficient data, and 77 (77.0%) were unexplained. Experts disagreed with the original COD in 40 cases (40.0%). These data suggest that SUDC incidence is higher than the current Centers for Disease Control and Prevention estimate (ie, 392 deaths in 2018). Conclusions and Relevance: To our knowledge, this is the first comprehensive masked forensic pathology review process of sudden unexpected pediatric deaths, and it suggests that SUDC may often go unrecognized in US death investigations. Some unexpected pediatric deaths may be erroneously attributed to a natural or accidental COD, negatively affecting surveillance, research, public health funding, and medical care of surviving family members. To further address the challenges of accurate and consistent death certification in SUDC, future studies are warranted.

Potential Role of Febrile Seizures and Other Risk Factors Associated With Sudden Deaths in Children.

Importance: Sudden unexplained death in childhood (SUDC) is the fifth leading category of death among toddlers but remains underrecognized and inadequately studied. Objective: To assess the potential role of febrile seizures (FS) and other risk factors associated with SUDC and describe the epidemiology, mechanisms, and prevention of SUDC. Design, Setting, and Participants: This case series study reviewed 622 consecutive sudden child death cases aged 1 to 17 years from 2001 to 2017 from 18 countries. Data were collected from family members of children who died suddenly; these families voluntarily registered with the SUDC Foundation. Data analysis was conducted from November 2017 to February 2019. Main Outcome Measures: Certified manner of death characterized as accident, natural, or undetermined. Results: A total of 391 families with decedents aged 1 to 6 years completed a comprehensive interview on medical and social histories, and circumstances of death with forensic evaluations revealing a cause of death (sudden explained death in childhood [SEDC]) or no cause of death (SUDC). Of these children, 231 (59.1%) were male, the mean (SD) age at death was 24.9 (12.8) months, and 104 (26.6%) had a history of FS. Compared with the general population FS prevalence (2%-5%), FS prevalence among SUDC (28.8%; 95% CI, 23.3%-34.2%) and SEDC (22.1%; 95% CI, 14.8%-29.3%) were elevated. The odds of death during sleep was 4.6-fold higher in SUDC than in SEDC cases (odds ratio, 4.61; 95% CI, 1.92-11.09; adjusted P = .008). The siblings of SUDC cases were followed up for 3144 life-years, and none died prematurely from SUDC. Conclusions and Relevance: This analysis of the largest SUDC cohort confirmed an increased FS rate and found significantly increased rates of FS among SEDC. This study suggests that seizures may contribute to some SUDC and SEDC deaths. The risk of sudden death in a sibling was low. To develop and assess preventive strategies, population-based studies are needed to define the epidemiology and spectrum of risk factors and identify biomarkers of patients with FS at high risk of sudden death.

The Diagnostic Shift of SIDS to Undetermined: Are There Unintended Consequences?

Over the last two decades, a diagnostic shift in regards to the certification of sudden deaths in infancy has emerged with reassignment of deaths previously certified as sudden infant death syndrome (SIDS) to a trend utilizing the classification of undetermined or asphyxia. The consequences of this shift outside the medicolegal death investigation (MDI) community is unknown. We surveyed US organizations working in the field of sudden infant death as well as bereaved parents to understand their perceptions of the current diagnostic trends. Two online anonymous surveys were utilized. Sixty-seven organizations and 55 parents with an infant death diagnosis of SIDS, sudden unexplained infant death (SUID), undetermined, or asphyxia participated. Just over 50% (34/67) of the organizations perceived the shift had an effect on their organization including barriers to bereavement support and education. Forty percent (22/55) of parent respondents stated they did not understand the final diagnosis of their infant's death. The highest frequency of themes elicited from parents were frustration that the diagnosis (regardless of terminology) did not fully explain the death, detrimental mental health effects, and negative perceptions towards the medical and public health communities. However, parents of children whose death was classified as SIDS were spared from negative perceptions towards the medical field, described the least amount of confusion, and reported the most instances of positives effects. Legal implications, perceived social stigmas, and research obstacles were also described. Recommendations from this study include the integration of collaborative efforts to combat sudden infant death with all stakeholders, in and outside of MDI, to achieve better understanding and eradication of these tragedies, improved public education, and effective care of all bereaved.