Unexplained Pediatric Deaths: Investigation, Certification and Family Needs

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Procedural guidance and key considerations developed by the National Association of Medical Examiners Panel on Sudden Unexpected Death in Pediatrics.

This new publication (Jan 2020) reviews medicolegal investigation of sudden, unexpected pediatric deaths, focusing on systems and procedures in the United States and those deaths which remain incompletely understood or entirely unexplained. It discusses the evolution of our understanding and practice in the area of sudden, unexpected pediatric death investigation, covering the changing philosophies and medical theories as to causation and changing investigative and certification strategies. Procedural guidance for investigation, autopsy and ancillary testing, certification and reporting, and key considerations for prevention, research and working with family members and other professional team members are provided.

The path to production of this publication began in 2016 when the National Association of Medical Examiners received a scientific grant from the SUDC Foundation called “Sudden Death in Pediatrics: Consensus for Investigation, Certification, Research Direction and Family Needs” to convene, in collaboration with the American Academy of Pediatrics, an expert panel to identify and discuss the diverse issues and limitations surrounding these deaths and build a foundation for national consensus. The combined effort of a panel of medical examiners, pediatricians, and federal agency representatives, representing the diverse interests of death investigation, autopsy performance, certification, clinical subspecialties (pediatrics, neurology, cardiology, child abuse, injury prevention, infectious diseases, genetics, and metabolic diseases), family needs, prevention, and epidemiology, culminated in this publication.

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SUDP >12M Certification Key Points

Determining the cause and manner of death when an infant or young child dies suddenly and unexpectedly requires a thorough investigation and can be some of the most difficult and frustrating cases that the medicolegal investigation team will face. Examination of the scene where the infant/child died, performance of a complete autopsy, and a review of the child’s and family’s medical history are the three critical elements that will give the medicolegal investigation team valuable knowledge to assist in determining how and why the child died.

The SUDC advocates for the consensus gudieliens outlined in Unexplained Pediatric Deaths cited above and summarized below. 

When cause of death cannot be determined, one of the following cause statements are recommended as applicable:​ 

​Unexplained Sudden Death (No Identified Intrinsic or Extrinsic Factors)  

  • Child greater than 12 months of age in apparent good health that dies suddenly and unexpectedly.​ 

  • For sleep related deaths: Found unresponsive or dead, with no obstruction of the nose and/or mouth or compression of neck/chest considered sufficient to cause asphyxia given the developmental abilities of the child (prone position without obstruction of nose and/or mouth may be present).​ 

  • Physical findings on body and at scene consistent with history provided by caregiver.​ 

  • Competent caregiver not impaired by drugs or alcohol.​ 

  • Completion of scene investigation and doll reenactment if age or circumstance appropriate and caregiver cooperative.​ 

  • Review of child medical records and family health history.​ 

  • Complete autopsy with histology, comprehensive toxicology testing of blood (including vitreous chemistries if possible).​ 

  • No anatomic, metabolic, toxicologic, chemical, historical or external cause of death identified.  Genetic testing is recommended but not required for this certification.​ 

  • No extrinsic or intrinsic risk factors are identified.​ 

Unexplained Sudden Death (Intrinsic Factors Identified)  

  • A cause of death cannot be determined and criteria for Unexplained Sudden Death (No Identified Intrinsic or Extrinsic Factors) are not met due to ​ 

  • intrinsic/natural abnormalities that are either known risk factors for sudden death ​(including, but not limited to, low birth weight, preterm birth, small for gestational age, concurrent non-lethal illness, febrile seizures) ​ 

  • or are of unknown significance (including, but not limited, to mutations of unknown significance).  ​ 

  • Trauma and other unnatural etiologies are sufficiently excluded.​ 

Unexplained Sudden Death (Extrinsic Factors Identified) 

  • A cause of death cannot be determined and criteria for Unexplained Sudden Death (No Identified Intrinsic or Extrinsic Factors) are not met due to the presence of unintentional extrinsic factors that increase risk for unnatural death. ​ 

  • This may include, but is not limited to, non-lethal injuries or injuries of unknown significance, non-lethal toxicologic findings of unknown significance, or circumstances otherwise concerning for unnatural death.  ​ 

Unexplained Sudden Death (Intrinsic and Extrinsic Factors Identified) 

  • A cause of death cannot be determined and criteria for Unexplained Sudden Death (No Identified Intrinsic or Extrinsic Factors) are not met due to a combination of intrinsic and extrinsic factors as described above.​ 

Undetermined (Not further specified) 

  • A cause of death cannot be determined due to circumstances or findings that make the above classifications inapplicable. ​Examples may include: Inconsistent histories and/or other evidence that raise uncertainty about manner of death,​ and competing causes of death​ 

  • Cases which remain undetermined but were not sudden.​ 

Undetermined (Insufficient Data) 

  • A cause of death cannot be determined because investigation, death scene examination, or autopsy were substantially limited, incomplete, or insufficient. ​Examples may include legal/religious restrictions, delayed report of death that limits scene investigation, and/or decomposition.​ 

Completing the Cause of Death Section on the Death Certificate:  

Part 1 (Line 1A) will read EXACTLY as one of the below (DO NOT specify the exact risk factors- only note if intrinsic or extrinsic factors were present) 

Unexplained Sudden Death (No Identified Intrinsic or Extrinsic Factors)  

Unexplained Sudden Death (Intrinsic Factors Identified)  

Unexplained Sudden Death (Extrinsic Factors Identified) 

Unexplained Sudden Death (Intrinsic and Extrinsic Factors Identified) 

Undetermined (Not further specified) 

Undetermined (Insufficient Data) 

Line 1B, 1C, 1D and Part 2 of Death Certificate are left blank 

IMPORTANT: The specifics of the intrinsic and extrinsic factors are NOT listed on the death certificate but included in the autopsy synoptic report ONLY. Inclusion on the death certificate will affect your intended ICD coding of your certification intention.  

Intrinsic Factors are  

  • natural conditions or risk factors associated with abnormal physiology or anatomy that are concerning as contributors to death but are insufficient as a cause . (e.g. low birth weight, preterm birth, small for gestational age, concurrent non-lethal illness, history of febrile seizures), ​ 

  • or natural conditions of unknown significance ​(e.g. cardiac channelopathy or seizure gene variants of unknown significance).​ 

Extrinsic Factors are 

  • conditions in the child’s immediate environment that are a potential threat to life but cannot be deemed the cause of death with reasonable certainty, ​ (e.g. side or prone sleep if unable to roll to supine, over-bundling without documented hyperthermia, objects in immediate sleep environment, sleep environment not specifically designed for infant sleep, soft or excessive bedding, and sleep-surface sharing), ​ 

  • injuries or toxicologic findings that are either non-lethal or of unknown lethality, or ​ 

  • circumstances/findings otherwise concerning for unnatural death.​ 

 

Example: 

Death Certificate of 2yo male with sudden uneplained death after complete investigation: 
COD: Unexplained Sudden Death (Intrinsic and Extrinsic Factors identified) 
MOD: Undetermined 

Within Synoptic Report: 
Intrinsic Factor- History of Febrile Seizure 
Extrinsic Factor- Found Prone Faced Down 

Scientific Advisory Board

Dominic Abrams, MD, MRCP
Michael J. Ackerman, MD
Thomas A. Andrew, MD, FCAP, FAAP
Andrew M. Baker, MD
Professor Roger Byard, MD
Orrin Devinsky, MD
J.C. Upshaw Downs, MD
Thomas Keens, MD
Joanne Kuntz, MD
Kelly C. Lear-Kaul, MD
Peter Lin, MD
Deborah A. Robinson
Ross Reichard, MD

 

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