half century since sids: a reappraisal of terminology

CLINICAL REPORT Guidance for the Clinician in Rendering Pediatric Care

Half Century Since SIDS: AReappraisal of TerminologyCarrie K. Shapiro-Mendoza, PhD, MPH,a Vincent J. Palusci, MD, MS, FAAP,b Benjamin Hoffman, MD, FAAP,c

Erich Batra, MD, FAAP,d Marc Yester, MD, FAAP,e Tracey S. Corey, MD,f Mary Ann Sens, MD, PhDg

AAP TASK FORCE ON SUDDEN INFANT DEATH SYNDROME, COUNCIL ON CHILD ABUSE AND NEGLECT, COUNCIL ON INJURY, VIOLENCE,AND POISON PREVENTION, SECTION ON CHILD DEATH REVIEW AND PREVENTION, NATIONAL ASSOCIATION OF MEDICAL EXAMINERS

After a sudden infant death, parents and caregivers need accurate andopen communication about why their infant died. Communicating tragicnews about a child’s death to families and caregivers is difficult. Sharedand consistent terminology is essential for pediatricians, other physicians,and nonphysician clinicians to improve communication with families andamong themselves. When families do not have complete information aboutwhy their child died, pediatricians will not be able to support themthrough the process and make appropriate referrals for pediatric specialtyand mental health care. Families can only speculate about the cause andmay blame themselves or others for the infant’s death. The terminologyused to describe infant deaths that occur suddenly and unexpectedlyincludes an assortment of terms that vary across and among pediatrician,other physician, or nonphysician clinician disciplines. Having consistentterminology is critical to improve the understanding of the etiology,pathophysiology, and epidemiology of these deaths and communicate withfamilies. A lack of consistent terminology also makes it difficult to reliablymonitor trends in mortality and hampers the ability to develop effectiveinterventions. This report describes the history of sudden infant deathterminology and summarizes the debate over the terminology and theresulting diagnostic shift of these deaths. This information is to assistpediatricians, other physicians, and nonphysician clinicians in caring forfamilies during this difficult time. The importance of consistentterminology is outlined, followed by a summary of progress towardconsensus. Recommendations for pediatricians, other physicians, andnonphysician clinicians are proposed.

BACKGROUND

Tremendous progress has been made since sudden infant deathsyndrome (SIDS) was first defined in 1969.1 Substantial reductions in

abstractaDivision of Reproductive Health, Centers for Disease Control andPrevention, Atlanta, Georgia; bDepartment of Pediatrics, GrossmanSchool of Medicine, New York University, New York, New York;cDepartment of Pediatrics, School of Medicine, Oregon Health &Science University, Portland, Oregon; dDepartments of Pediatrics andFamily and Community Medicine, College of Medicine, PennsylvaniaState University, Hershey, Pennsylvania; eDepartment of Pediatrics,Children’s Hospital of Pittsburgh, Pittsburgh, Pennsylvania; fFloridaDistricts 5 & 24 Medical Examiner’s Office, Leesburg, Florida; andgDepartment of Pathology, School of Medicine and Health Sciences,University of North Dakota, Grand Forks, North Dakota

Dr Shapiro-Mendoza contributed to the concept and content of thisclinical report and wrote the first draft and revised subsequentdrafts with substantial input of all coauthors and reviewers; DrsPalusci, Hoffman, Batra, Yester, Corey, and Sens contributed to theconcept and content of this clinical report; and all authorsapproved the final manuscript as submitted.

This document is copyrighted and is property of the AmericanAcademy of Pediatrics and its Board of Directors. All authors havefiled conflict of interest statements with the American Academy ofPediatrics. Any conflicts have been resolved through a processapproved by the Board of Directors. The American Academy ofPediatrics has neither solicited nor accepted any commercialinvolvement in the development of the content of this publication.

Clinical reports from the American Academy of Pediatrics benefitfrom expertise and resources of liaisons and internal (AAP) andexternal reviewers. However, clinical reports from the AmericanAcademy of Pediatrics may not reflect the views of the liaisons orthe organizations or government agencies that they represent.

The guidance in this report does not indicate an exclusive courseof treatment or serve as a standard of medical care. Variations,taking into account individual circumstances, may be appropriate.

All clinical reports from the American Academy of Pediatricsautomatically expire 5 years after publication unless reaffirmed,revised, or retired at or before that time.

To cite: Shapiro-Mendoza CK, Palusci VJ, Hoffman B, et al. HalfCentury Since SIDS: A Reappraisal of Terminology. Pediatrics.2021;148(4):e2021053746

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sudden infant deaths have beenlargely attributable to the promotionof safe sleeping environments,especially supine sleep position.2

Yet, every year in the United States,approximately 3500 infants still diesuddenly and unexpectedly, andfurther declines in these deathshave slowed considerably since1999.3 Although death-sceneevidence and witness accounts mayhelp provide some clues about whyand how deaths occur, these deathsare often unobserved orunwitnessed events, and the lack ofstandardized death-sceneinvestigation and autopsy practicesmeans that many remain a mystery.

To determine the cause and mannerof a sudden unexpected infant death(SUID), a formal case investigationshould be undertaken, examiningmedical, social, and other factorsthat might have played a role.Because there is no biologicalmarker to conclusively diagnosesuffocation, whether intentional orunintentional, information from thescene investigation, together withwitnessed accounts of the eventsleading to the death, are critical forestablishing cause. Without athorough case investigation, childabuse, unsafe products andenvironments, and other threats topublic health cannot be identified,and effective intervention strategiescannot be implemented.

Ideally, the investigation includes ascene investigation with caregiverand witness interviews, a dollreenactment, documentation andphotographs describing the sleepenvironment and otherenvironmental characteristics, areview of the child’s clinical history,and a full postmortem examinationand testing.4–7 Information aboutthe circumstances and eventssurrounding the death is dependenton the quality and depth of thedeath-scene investigation anddocumentation from first

responders, law enforcement,medicolegal death investigators, andother health and social serviceproviders. Standardized sceneinvestigation8 and autopsyprotocol9,10 guidance exists but isnot followed universally.11 Inaddition, many medical examinerand coroner offices lack sufficienttraining and resources to conductthorough, consistent caseinvestigations.12 Even whensophisticated tools, such as genetictesting, are available, the extent thata neurologic condition or cardiacdefect may have contributed to aSUID may not be known.13–15 It isnot often possible to determine if aspecific condition or defect causedthe death or whether the conditionor defect was an unrelated finding.

Consider a common sudden deathscenario: a healthy infant is placedto sleep in an adult bed with pillowsand blankets, and an exhaustedcaregiver falls asleep next to theinfant. The caregiver awakens hourslater and finds the infantunresponsive and unable to beresuscitated. Although the infantwas asleep in an unsafe sleepenvironment, the events leading tothe death were unobserved.Evidence to substantiate that theinfant was overlaid or the infant’sairway had been obstructed by softbedding is not available. There areno biological markers todifferentiate suffocation from apossible natural cause.4 If the causeof death cannot be determined aftera thorough scene investigation, itwill be considered a result ofindeterminable cause.

What should these deaths be called?How should they be classified? Theterminology used to classify theseinfant deaths varies among US deathcertifiers (medical examiners andcoroners) and includes a variety ofterms and acronyms, includingundetermined, unexplained, andunknown cause as well as SIDS,

SUID, and accidental suffocation orasphyxia in an unsafe sleepingenvironment.16,17 This reportdescribes the history of SIDSterminology and summarizes thedebate over the terminology and itsresulting diagnostic shift. Theimportance of consistentterminology is outlined, followed bya summary of progress towardconsensus. Recommendations forpediatricians, other physicians, andnonphysician clinicians to facilitateconsensus are proposed. Becauseterminology and clinical guidancefor brief resolved unexplainedevents (formerly, apparent life-threatening events) was publishedby the American Academy ofPediatrics (AAP) in 2016, thissubject is not addressed in thisreport.18

HISTORY OF SIDS TERMINOLOGY

SIDS was first coined and defined byDr Bruce Beckwith in 1969.1,19

Beckwith defined SIDS as “thesudden death of any infant or youngchild, which is unexpected byhistory, and in which a thoroughpost-mortem examination fails todemonstrate an adequate cause fordeath”1 (Table 1). Sudden refers tothe fact that death comes withoutwarning, and unexpected means thatthere was no preexisting conditionknown that could have reasonablypredicted it. When the definitionwas first introduced, it established acommon term, focusing attention onthis group of infant deaths, andhelped to address the stigmaassociated with these deaths. Theterm SIDS and its definition weresubsequently adoptedinternationally,20,21 allowingresearchers and policymakers toestablish a scientific researchagenda to explore its epidemiologyand etiology. However, even withwide acceptance, SIDS remains adiagnosis of exclusion withoutclearly defined objective criteria.The use of the term SIDS and how it

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TABLE 1 Selected Terminology and Definition or Criteria to Classify Unexplained Sudden Deaths in Infants and Accidental Asphyxiation

Terminology Case Definition

Beckwith, 19691

Sudden Infant Death Syndrome (SIDS) “The sudden death of any infant or young child, which is unexpected by history, and inwhich a thorough post-mortem examination fails to demonstrate an adequate causefor death.”

Willinger et al, 19896

Sudden Infant Death Syndrome (SIDS) “The sudden death of an infant under one year of age, which remains unexplained aftera thorough case investigation, including performance of a complete autopsy,examination of the death scene, and review of the clinical history.”

Undetermined or unexplained cause “Cases that are autopsied and carefully investigated, but which remain unresolved maybe designated as ‘undetermined,’ ‘unexplained,’ or the like. ‘Unresolved’ cases arethose for which the history, investigation, or autopsy reveals information that placesdeath outside the SIDS category but does not explain the cause of death. Examples ofthe latter, are suspected cases of abuse, neglect, or accidental suffocation; cases withepisodes of vomiting or diarrhea in 24 hours prior to death without pathologicevidence of infection; or cases in which the information regarding death is notreliable.”

Krous et al, 20045

General definition: Sudden Infant Death Syndrome (SIDS) “Sudden unexpected death of an infant less than 1 year of age, with onset of the fatalepisode apparently occurring during sleep, that remains unexplained after a thoroughinvestigation, including performance of a complete autopsy and review of thecircumstances of death and the clinical history.”

Category IA SIDS: classic features of SIDS present andcompletely documented

“Infant deaths that meet the requirements of the general definition and also all of thefollowing requirements.

Clinical� More than 21 days and <9 months of age.� Normal clinical history, including term pregnancy (gestational age of $37 weeks).� Normal growth and development.� No similar deaths among siblings, close genetic relatives (uncles, aunts, or first-degree

cousins), or other infants in the custody of the same caregiver.Circumstances of Death� Investigation of the various scenes where incidents leading to death might have

occurred and determination that they do not provide an explanation for the death.� Found in a safe sleeping environment, with no evidence of accidental death.Autopsy� Absence of potentially fatal pathologic findings. Minor respiratory system inflammatory

infiltrates are acceptable; intrathoracic petechial hemorrhage is a supportive but notobligatory or diagnostic finding.

� No evidence of unexplained trauma, abuse, neglect, or unintentional injury.� No evidence of substantial thymic stress effect (thymic weight of <15 g and/or

moderate/severe cortical lymphocyte depletion). Occasional ‘starry sky’ macrophagesor minor cortical depletion is acceptable.

� Negative results of toxicological, microbiologic, radiologic, vitreous chemistry, andmetabolic screening studies.”

Category IB SIDS: classic features of SIDS present butincompletely documented

“Infant deaths that meet the requirements of the general definition and also meet all ofthe criteria for category IA except that investigation of the various scenes whereincidents leading to death might have occurred was not performed and/or 1 of thefollowing analyses was not performed: toxicological, microbiologic, radiologic, vitreouschemistry, or metabolic screening studies.”

Category II SIDS “Infant deaths that meet category I criteria except for $1 of the following:Clinical� Age range outside that of category IA or IB (ie, 0–21 days or 270 days [9 months]

through first birthday).� Similar deaths among siblings, close relatives, or other infants in the custody of the

same caregiver that are not considered suspect for infanticide or recognized geneticdisorders.

� Neonatal or perinatal conditions (for example, those resulting from preterm birth) thathave resolved by the time of death.

Circumstances of Death� Mechanical asphyxia or suffocation caused by overlaying not determined with

certainty.Autopsy

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TABLE 1 Continued


� Abnormal growth and development not thought to have contributed to death.� Marked inflammatory changes or abnormalities not sufficient to be unequivocal causes

of death.”Unclassified sudden infant death “Infant deaths that do not meet the criteria for category I or II SIDS but for which

alternative diagnoses of natural or unnatural conditions are equivocal, including casesfor which autopsies were not performed.”

Goldstein et al, 201915

Unexplained sudden death in infancy or Sudden InfantDeath Syndrome

“The sudden unexpected death of an apparently healthy infant under one year of agethat remains unexplained after a thorough case investigation, including performanceof a complete autopsy with ancillary testing, examination of the death scene, andreview of the clinical history.”

Special note: “Infant deaths with adequate death scene investigation and autopsy, with ahistory of bed/sleep surface sharing, soft bedding, or non-supine sleep, and withoutphysical evidence of asphyxia, may be more appropriately certified as unexplainedsudden death in infancy or sudden infant death syndrome.”

Other ill-defined or unspecified causes of death(undetermined)

“The investigation, death scene examination, or autopsy was substantially limited,incomplete or insufficient (eg, legal/religious restrictions, delayed report of death thatlimits scene investigation, or decomposition).”

Or“The investigation, death scene examination, or autopsy had inconsistent accounts or

other findings raise competing conclusions about the cause of death.”Unintentional threat to breathing (accidental asphyxia):

certification of asphyxia“Adequate evidence must be documented to substantiate asphyxiation, given the

decedent’s age and stage of development.There cannot be a reasonable competing cause of death after a complete autopsy with

ancillary testing, examination of the death scene (with a doll re-enactment whenappropriate), and review of the clinical history.

Bed/sleep surface sharing, soft bedding, or prone sleep, without adequate evidence forairway obstruction or chest wall compression, are insufficient to certify a death asdue to asphyxia. These deaths may be more appropriately certified as unexplainedsudden death or SIDS. The use of ‘possible’ or ‘probable’ asphyxia will result in thedeath being classified as asphyxia.”

National Association of Medical Examiners Panel onSudden Unexpected Death in Pediatrics, 202010,14

Unexplained sudden death (no identified intrinsic orextrinsic factors)

“Infant less than one year of age in apparent good health that dies suddenly andunexpectedly.

� For Sleep-related Deaths:o Placed alone, supine, in infant-specific sleep environment (eg, crib, bassinet,

portable crib, play pen) with flat, firm sleep surface, uncluttered by objects, andwithout potential areas of entrapment.

o Found unresponsive or dead, in the same sleep environment, with no obstruction ofthe nose and/or mouth or compression of neck/chest to cause asphyxia given thedevelopmental abilities of the infant, as described by finder and demonstrated bydoll reenactment.

� The infant was not overly dressed or bundled for the environmental temperature.� Competent caregiver not impaired by drugs or alcohol.� Physical findings on body and at scene consistent with history provided by caregiver.� Completion of scene investigation and doll reenactment unless caregiver declines.� Review of child medical records and family health history.� Complete autopsy with histology, comprehensive toxicology testing (including vitreous

chemistries if possible), and skeletal survey.� No anatomic, metabolic, toxicological, 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 � “A cause of death cannot be determined and criteria for Unexplained Sudden Death(No Identified Intrinsic or Extrinsic Factors) are not met due too 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)

o or are of unknown significance (including, but not limited, to mutations of unknownsignificance).

� Trauma and other unnatural etiologies are sufficiently excluded.”


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should be labeled and defined arecontroversial and complex topicsthat remain debated.16,17,19 Manyclassifications and definitions exist,but none have been accepteduniversally.1,5,6,10,15,22–26

In 1989, 20 years after SIDS wasfirst defined, the National Institutesof Health (NIH) convened amultidisciplinary panel of 12 expertsto update the original SIDSdefinition (Table 1).6 The paneldescribed SIDS as “the sudden deathof an infant under one year of age,which remains unexplained after athorough case investigation,including performance of a completeautopsy, examination of the deathscene, and review of the clinicalhistory” (Table 1). Although similarto the 1969 definition, the reviseddefinition limited SIDS to infants

younger than 1 year and required areview of the history andexamination of the death scene. Theexplicit requirement of a sceneinvestigation was in part because ofthe recognition of the investigation’svalue in identifying specific causesof death.6,27 Ultimately, thisrequirement led to the 1996creation and adoption ofrecommended standards on how toconduct a scene investigation forthese infants, which included theCenters for Disease Control andPrevention’s Sudden UnexplainedInfant Death Investigation ReportingForm, investigation guidelines, andnational training.8,28

In 2004, an international group ofSIDS experts met in San Diego,California, to again refine the SIDSdefinition.5 The expert group of 10

pediatric pathologists, forensicpathologists, and pediatriciansincluded Dr Beckwith and was ledby Dr Henry Krous. The groupagreed on a revised generaldefinition and series of subcategorydefinitions for sudden infant deaths(Table 1).5 The revised definition,often referred to as the “San Diegodefinition,” characterized SIDS as the“sudden unexpected death of aninfant less than 1 year of age, withonset of the fatal episode apparentlyoccurring during sleep, that remainsunexplained after a thoroughinvestigation, including performanceof a complete autopsy and review ofthe circumstances of death and theclinical history.” This reviseddefinition, like previous iterations,emphasized that SIDS was adiagnosis of exclusion. New to thedefinition was identifying that these

TABLE 1 Continued


Unexplained sudden death (extrinsic factors identified)b “A cause of death cannot be determined and criteria for Unexplained Sudden Death (NoIdentified Intrinsic or Extrinsic Factors) are not met due to the presence ofunintentional extrinsic factors that increase risk for unnatural death.

This may include, but is not limited to, non-lethal injuries or injuries of unknownsignificance, nonlethal toxicological findings of unknown significance, orcircumstances otherwise concerning for unnatural death.”

Unexplained sudden death (intrinsic and extrinsicfactors identified)a,b

“A cause of death cannot be determined and criteria for Unexplained Sudden Death (NoIdentified Intrinsic or Extrinsic Factors) are not met due to a combination of intrinsicand extrinsic factors as described above.”

Undetermined (not further specified) “A cause of death cannot be determined due to circumstances or findings that make theabove classifications inapplicable. Examples may include: Inconsistent histories and/orother evidence that raise uncertainty about manner of death, and competing causesof 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 mayinclude legal/religious restrictions, delayed report of death that limits sceneinvestigation, and/or decomposition.”

Asphyxia “The case must have a complete/full autopsy.Toxicology, histology, vitreous electrolytes, cultures, and review of medical history are to

be performed, as necessary as determined by investigation and autopsy.The infant must have obstruction of both nose and mouth or compression of the neck or

chest, that is reliably witnessed or demonstrated by doll reenactment, or otherreliable evidence of overlay or entrapment.

Asphyxiation must be probable given infant’s age and stage of development.There cannot be a reasonable competing cause of death.”

a“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 (eg, low birth weight, preterm birth, small for gestational age, concurrent non-lethal illness, history of febrile seizures), or natural conditions of unknown significance (eg,cardiac channelopathy or seizure gene variants of unknown significance).”b“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 (eg,

side or prone sleep if unable to roll to supine, over-bundling without documented hyperthermia, objects in immediate sleep environment, sleep environment not specificallydesigned 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 circumstan-ces/findings otherwise concerning for unnatural death.”


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deaths occurred during sleep.Furthermore, subcategories ofsudden infant death wereintroduced: category IA SIDS (classicfeatures of SIDS present andcompletely documented); categoryIB SIDS (classic features of SIDSpresent but incompletelydocumented); category II SIDS; andunclassified sudden infant death(Table 1). The unclassified suddeninfant death category was intendedto capture cases in which“alternative diagnoses of natural orunnatural conditions are equivocal,including cases for which autopsieswere not performed.” Of note, the1989 NIH panel had similarlyrecommended that cases lacking apostmortem examination and thatremained “unresolved” after athorough case investigation beclassified as undetermined orunexplained cause and not as SIDS.6

Examples of unresolved cases were“suspected cases of abuse, neglect,or accidental suffocation; cases withepisodes of vomiting or diarrhea in24 hours before death withoutpathologic evidence of infection; orcases in which the informationregarding death is not reliable.”

TERMINOLOGY DEBATE

Even with periodic revisions andupdates to the 1969 SIDS definition,vigorous debate continues regardingthe labeling and classification ofsudden unexplained infant deaths.SIDS is the favored term for manyacademic and clinical researchersbecause it was the term used mostoften in published etiologic andobservational risk factor studiesduring the 1970s–1990s. However,in the US forensic medicinecommunity, many medicalexaminers and coroners havediscontinued using the term SIDSand often use other designations,such as undetermined cause, suddenunexplained infant death, and otherterms that reflect a possibleaccidental suffocation in an unsafe

sleep environment.16 There is alsodisagreement among US medicalexaminers and coroners as towhether infant deaths meeting theSIDS definitions could constitute a“syndrome”4,17: a term that refers toa disease or condition with acommon group of signs andsymptoms.5 These sudden deathsoccur in apparently healthy infantswith no identified medicalconditions or disease; therefore,many argue against the use of theword syndrome.5,17 Others arguethat the term SIDS conveys acertainty of diagnosis, although theunderlying cause of SIDS remainsunknown.5,17 Others believe thatSIDS is a diagnosis of exclusion, and,although a natural or unnaturalcause may or may not exist, thedegree of uncertainty precludes amore definitive causedetermination.10,17

Because there is no universallyaccepted standard procedureregarding classification of suddeninfant deaths, variable terms andacronyms have been used inscientific, practice, and policydocuments. Frequently usedacronyms and terms include SIDS,SUID, “SUDI,” unexplained,unexpected, and undeterminedcauses. SUID has become anumbrella term to describe suddeninfant deaths, including those deathspreviously called SIDS.15,29,30 The“U” in SUID can refer either tounexpected or unexplained. SUIDterms are frequently usedinterchangeably, often withoutcareful reflection as to what the “U”signifies. In the United Kingdom,Europe, Australia, and New Zealand,“SUDI” is often used in place ofSUID, referring to suddenunexpected death in infancy orsudden unexplained death ininfancy. Most would agree, however,that before investigation, when animmediate cause is not obvious,deaths are both unexpected and

unexplained. After investigation, thedeath is either explained or remainsunexplained. Because these deathscommonly occur in an unsafesleeping environment, they areincreasingly referred to as sleep-related infant deaths. The AAP hasacknowledged terms other thanSIDS, including SUID and sleep-related infant deaths, in their clinicalreports “SIDS and Other Sleep-Related Infant Deaths: EvidenceBase for Updated 2016Recommendations for a Safe InfantSleeping Environment”2 and“Identifying Child Abuse FatalitiesDuring Infancy.”7

For the forensic medicinecommunity, evidence at the deathscene may point to a possibleasphyxiation caused by caregiveroverlay or soft bedding, but theunobserved and unwitnessed natureof most of these deaths and lack ofconclusive findings indicating amedical condition at autopsy canprevent the death certifier fromattributing a specific cause. Forexample, some cases interpreted asSIDS may be an intentionalsmothering, but smothering, likedrowning and many other asphyxiarelated conditions, may have nodemonstrable findings at autopsy.Given this conundrum, some medicalexaminers and coroners may preferto classify infant deaths occurring inan unsafe sleep environment asundetermined cause or possible orprobable accidental asphyxiation inan unsafe sleep environment. Somemedical examiners and coroners willbe comfortable certifying thesedeaths as accidental suffocation orasphyxiation. Factors contributing toexplained suffocation deaths, such asshared sleep surface and softbedding in the sleep environments,are also risk factors for, but notnecessarily causes of, SIDS.4,31

Classification decisions may beinfluenced by office policies,32

personal beliefs and biases,33


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previous training,4 and diagnosticpreferences.16

DIAGNOSTIC SHIFT

Inconsistent reporting practices, lackof consensus on terminology, andchanges in understanding why thesedeaths occurred have resulted in adiagnostic shift among medicalexaminers and coroners.3,34,30 Aspreviously noted, US death certifiershave moved away from reporting SIDSand toward reporting otherdesignations, such as undeterminedcause and accidental suffocation andstrangulation in bed.3,16 Thisdiagnostic shift, which has also beenobserved in other countries such asNew Zealand and Australia,35,36 affectsboth surveillance and epidemiologicaland etiologic research. Importantly, forsurveillance and research that rely ondeath certificate data, the diagnosticshift has resulted in variability inattribution of cause, making it difficultto accurately differentiate explainedcauses (ie, accidental suffocation andstrangulation in bed) fromunexplained causes (ie, SIDS and otherundetermined causes). Theseexplained and unexplained causesshare risk factors, but the level ofevidence used to determine the causeis inconsistent among deathcertifiers.16

The diagnostic shift and difficulty indifferentiating causes of death iscompounded by mortality codingrules in the International StatisticalClassification of Diseases and RelatedHealth Problems (ICD).20,21 ICDcodes are applied to cause-of-deathdeterminations used to certifysudden infant deaths, but the codesapplied do not always reflect thecertifier’s intent.15,16 By law, theofficial cause of death for thesecases must be determined andreported by the medicolegal deathinvestigation system (ie, medicalexaminer) and not by thepediatrician. Codes in theInternational Statistical Classification

of Diseases and Related HealthProblems, 10th Revision, (ICD-10)21

differ from those in the InternationalStatistical Classification of Diseasesand Related Health Problems, 10thRevision, Clinical Modification, (ICD-10-CM).37 The ICD-10-CM wasadapted from the ICD-10 forclassifying and reporting diseasesand other morbidities in US healthcare settings. The ICD-10, not theICD-10-CM, is used for officialreporting of mortality statistics inthe United States and other nations.

For mortality surveillance that relieson ICD coding from death certificates,it has become customary in the UnitedStates to group sudden infant deathcauses into 1 of 3 categories: SIDS(ICD-10 code R95), unknown orunspecified causes (ICD-10 code R99),and accidental suffocation andstrangulation in bed (ICD-10 codeW75). These 3 causes are included inthe larger category called SUID.3,29,30

This larger category allows forconsistent monitoring of mortalitytrends and comparisons acrossjurisdictions and includes deaths fromboth explained (ie, accidentalsuffocation and strangulation in bed)and unexplained causes (ie, SIDS,unknown and unspecified causes). Forresearch purposes, this categorizationmay be reasonable if the goal is tocapture all SUIDs initially and then,after a careful examination andassessment, further categorize deathsto meet a study’s case definition of anunexplained or explained cause.

IMPORTANCE OF CONSISTENTTERMINOLOGY

When an infant dies, shared andconsistent terminology is essentialto help pediatricians, otherphysicians, and nonphysicianclinicians (eg, family physicians,obstetricians, nurses, social workers,and home visitors) improvecommunication with families andamong themselves. A lack ofconsistent practices and consensus

on terminology, including the use ofacronyms, creates confusion for andpossibly alienation of stakeholdersand partners: including parents,caregivers, pediatricians, programprevention planners, and othermedical and scientific professionals.The current use of inconsistentterminology can lead tocommunication errors andunnecessary misunderstandings. Itcan affect the development of publicpolicies designed to reduce sleep-related infant deaths, including childproduct safety legislation andregulation focused on promotingsafe sleep environments.Inconsistent terminology may alsohave unintended consequences forprevention messages andinterventions for parents andcaregivers. In addition, it cannegatively affect the bereavementresponse and support beingprovided after a sudden infantdeath.

HOW TO SENSITIVELY COMMUNICATEWITH PARENTS

After an infant death, pediatricians,other physicians, and nonphysicianclinicians (especially hospital-basedphysicians) are often the ones whofirst speak to grieving parents aboutpossible causes of death. Sharedconsistent terminology during theseinteractions with families isnecessary for effectivecommunication. Pediatricians, otherphysicians, and nonphysicianclinicians serving the infant’s familymembers continue their support offamilies through counseling andassessment of surviving siblings forpotential shared congenital orgenetic conditions. Increasingly, theyparticipate in multidisciplinary childdeath reviews, consult with forensicmedical specialists, and help supportfamilies through the investigationprocess, providing resources andreferrals after the death. Thesephysicians and nonphysicianclinicians, especially pediatricians,


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are crucial and trusted sources ofinformation for families andcommunities, facilitating theadoption of safe sleep practices andother strategies to reduce the risk ofinfant sleep-related deaths.7

It is important, when communicatingwith families after an infant death, tonot assign blame to the family orincite feelings of guilt, while at thesame time acknowledging potentiallyunsafe behaviors or hazards in theenvironment to effectively messagehow risks in the prenatal period orunsafe sleep practices may continue topose a risk to surviving or subsequentchildren. The appropriate ethicalmedical professional response to everychild death must be compassionate,empathic, supportive, andnonaccusatory, even if child abuse issuspected.

Concerns about unsafe sleep andbed-sharing as possible contributorsto a child’s death should be sharedwith parents as appropriate at sometime during the investigation.Several resources have beendeveloped to facilitate this sensitivecommunication. The AAP and othershave identified key principles andresources to assist pediatricians,other physicians, and nonphysicianclinicians and families duringinvestigation. Recommendations forthese discussions for familiesinclude saying things like “I am sosorry for your loss,” “I am here tohelp,” and “I have some resourcesthat might be of help. They havebeen helpful to others.” It isimportant for pediatricians, otherphysicians, and nonphysicianclinicians to be truthful andsensitive, while sharing theirwillingness to help the familyunderstand the death, the status ofthe investigation, and what steps, ifany, should be taken to helpsurviving family members, includingbut not limited to evaluations for

potential underlying conditions orreferrals to pediatric specialists andmental health professionals.38–45

PROGRESS ON REACHING CONSENSUS

There are implications in reachingconsensus on terminology to consider,including historical convention,uncertainty regarding circumstances atthe time of death, geographicalvariations in practice, training ofdeath-scene investigators and deathcertifiers, and caregiver guilt andshame. In addition, severalperspectives must be addressed. First,it is essential for the forensiccommunity and health careprofessionals to incorporateterminology that avoids placing blameor increasing feelings of guilt on thepart of a caregiver suffering a tragicloss and objectively and accuratelydescribes the circumstances around aninfant’s death. Second, the medicalexaminer or coroner needs toeffectively communicate investigationand autopsy findings and explain whythe conclusions about cause of deathmay be inconclusive. Third, theforensic, pediatric, and public healthcommunities need consistentcommunication tools to allow them toacknowledge unsafe behaviors (eg,bed-sharing) or the presence ofhazards in the environment (eg, cribbumpers or soft bedding) withoutassigning blame or inciting feelings ofguilt. Finally, pediatricians, otherphysicians, and nonphysician cliniciansmust effectively message how risksidentified in the prenatal period (eg,smoking and drinking duringpregnancy) or unsafe sleep practicesmay continue to pose a risk tosurviving children. The goal of thiscareful communication is to preventfrom assigning blame or increasingfeelings of guilt of any party. It isimportant that the facts and potentialcontributing factors to a death be fullyshared. In sharing this information, itis important to provide accurate

information regarding the deceasedbut also to identify and address anypreventable risk factors for futurechildren or circumstances.

Although there is agreement that allinfant deaths are tragic events withprecious lives lost, there is a need toconsistently classify these suddeninfant deaths for which the causeremains undetermined orunexplained. Consensus is alsoneeded on how to classify accidentalsuffocation deaths that occur in anunsafe sleep environment: that is,what evidence is needed to classifya death as an explained suffocationin the absence of a biological markerto determine the cause. Currentterminology and acronyms mayexacerbate confusion. Consistency indescribing these deaths should be akey goal. In 2017, a group of USexperts came together to findcommon ground for classifyingsudden infant deaths.10 The group,the National Association of MedicalExaminers (NAME) Panel on SuddenUnexpected Death in Pediatrics,included forensic pathologistsrepresenting NAME, pediatriciansrepresenting the AAP, and federalliaisons from the Centers for DiseaseControl and Prevention and NIH. Inaddition, in November 2018, aninternational expert panel (forensicpathologists, pediatricians,emergency physicians, familyphysicians, researchers,epidemiologists, and parents) met todiscuss the terminology andnomenclature for sudden infant andchild deaths at Radcliffe College,making ICD coding recommendationsto the World Health Organization(WHO) for International StatisticalClassification of Diseases and RelatedHealth Problems, 11th Revision (ICD-11).15 Many participants from theRadcliffe Congress meeting alsoparticipated in the NAME Panel. Bothgroups acknowledged that the forensicpathology experts had moved away


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from calling these deaths “SIDS” andhad rejected the idea that the etiologyof these deaths satisfied the definitionof a syndrome. Regardless, researchersat the Radcliffe meeting, many with 30to 40 years of SIDS experience, stillpreferred the term “SIDS.” Forensicpathologists at the Radcliffe Congressagreed with other participants that thetitle of the code in ICD-11 shouldinclude both unexplained suddendeath in infancy and SIDS, to reflectthat both certifications could beclassified under the same code (Table1). This recommendation was echoedby the NAME Panel in its 2019publication.10 In addition, the NAMEPanel recommended that certifiers use“unexplained sudden death” (and notSIDS) and specify whether intrinsicand extrinsic risk factors (Table 1)were identified in the cause-of-deathstatement for unexplained suddenpediatric (infants <1 year andchildren 1 year old and older) deaths,including those that meet the currentdefinition of SIDS (Table 1). Bothgroups also identified a set of criteriafor determining accidental suffocationas a cause in sleep-related deaths.

PRACTICAL CONSIDERATIONS

The lack of consistency in how suddeninfant deaths are categorized ordescribed across the United States hascreated confusion and has hadunintended consequences for bereavedfamilies, pediatricians, other physicians,nonphysician clinicians, andpolicymakers. In addition, inaccurateand inconsistent classification ofsudden infant deaths has affected ourability to: (1) reliably and accuratelymonitormortality trends; (2)understand the pathophysiology andepidemiology of sudden infant deaths;and (3) develop effective data-drivenpublic health and preventivemessages.3,10,15 It remains to be seenwhether theWHOwill accept thechanges proposed by the RadcliffeCongress for ICD classification andcoding of unexplained sudden deaths;

as of August 2021, this proposal isunder review. The ICD-11will officiallygo into effect amongWHOmemberstates in January 2022. It is also tooearly to determine towhat extent theforensic communitywill adopt theNAMEPanel’s recommendations anduse of the phrase “unexplained suddendeath.”

Because pediatricians, other physicians,and nonphysician clinicians are oftenthe conduit of information betweenbereaved families andmedicalexaminers, coroners, and death-sceneinvestigators, it is important for thesehealth care professionals to becognizant of the terminology used andits implications to enable them to helpfamilies, review deaths, and preventfurther fatalities. In response, the AAPrecommends the following:

� Advocating for the rapid adop-tion of the NAME Panel’s termi-nology because the terminologyis definitive and positioned to aidsurveillance monitoring activitiesand epidemiological analysis.10,14

Increased understanding of mor-tality trends, etiology, and riskfactors can inform effective inter-ventions and guide futureresearch, ultimately reducingfuture fatalities.

� If the proposal of the RadcliffeCongress for changing the ICDclassification and coding of unex-plained sudden deaths isapproved by the WHO, encourag-ing adaption of ICD-11 coding bythe United States and other WHOmember states by January 2022.

� Advocating that state child pro-tective service agencies use theNAME Panel’s terminology intheir assessments.

� NAME, in collaboration with theAAP, should develop an algorithmto lead a medical examiner,through consideration of the his-tory, the findings at the scene, andpossible intrinsic and extrinsic

contributing factors, to the finaladjudication of cause of death.

� Encouraging the medical examinerto have a formal reporting mecha-nism back to the primary carepediatrician, other physician, ornonphysician clinician. The pedia-trician, other physician, or nonphy-sician clinician should, in turn, offerthe family a chance to meet andreview the findings of any investi-gation, including discussing possi-ble contributing or confoundingfactors that may have played a rolein the infant’s death and possiblybe used to prevent future deathsand providing any needed referralsfor pediatric specialist or mentalhealth care.

� Training for physicians, nonphy-sician clinicians, and the forensiccommunity about effective com-munication practices that priori-tize empathy and sensitivity insudden infant death and all fatal-ity investigations.

� Affirmation that when childabuse is eliminated, other riskfactors such as sleeping environ-ment, drug or alcohol use of care-givers, prenatal exposures, andpoverty are matters of publichealth and family health. Themere presence of risk factorsshould not support legal charges.

LEAD AUTHORS

Carrie K. Shapiro-Mendoza, PhD,MPHVincent J. Palusci, MD, MS, FAAPBenjamin Hoffman, MD, FAAPErich Batra, MD, FAAPMarc Yester, MD, FAAPTracey S. Corey, MDMary Ann Sens, MD, PhD

AAP TASK FORCE ON SUDDEN INFANTDEATH SYNDROME

Rachel Y. Moon, MD, FAAP,ChairpersonMichael H. Goodstein, MD, FAAPElie Abu Jawdeh, MD, PhD, FAAP


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Rebecca Carlin, MD, FAAPJeffrey Colvin, MD, JD, FAAPSunah Susan Hwang, MD, FAAPFern R. Hauck, MD, MS

CONSULTANTS AND LIAISONS

Elizabeth Bundock, MD, PhD –National Association of MedicalExaminersLorena Kaplan, MPH – Eunice KennedyShriver National Institute of ChildHealth and Human DevelopmentSharyn E. Parks, PhD, MPH – Centersfor Disease Control and PreventionMarion Koso-Thomas, MD, MPH –Eunice Kennedy Shriver NationalInstitute of Child Health and HumanDevelopmentCarrie K. Shapiro-Mendoza, PhD,MPH – Centers for Disease Control andPrevention

STAFF

Jim Couto, MA

AAP COUNCIL ON CHILD ABUSE ANDNEGLECT EXECUTIVE COMMITTEE,2019–2020

Suzanne B. Haney, MD, MS, FAAP,ChairpersonAndrew P. Sirotnak, MD, FAAP,Immediate Past ChairpersonAndrea G. Asnes, MD, MSW, FAAPCAPT Amy R. Gavril, MD, MSCI,FAAPRebecca Greenlee Girardet, MD,FAAPAmanda Bird Hoffert Gilmartin, MD,FAAPNancy D. Heavilin, MD, FAAPAntoinette Laskey, MD, MPH, MBP,FAAPStephen A. Messner, MD, FAAPBethany A. Mohr, MD, FAAPShalon Marie Nienow, MD, FAAPNorell Rosado, MD, FAAP

LIAISONS

Heather C. Forkey, MD, FAAP – Councilon Foster Care, Adoption and KinshipCare

Brooks Keeshin, MD, FAAP – AmericanAcademy of Child and AdolescentPsychiatryJennifer Matjasko, PhD – Centers forDisease Control and PreventionHeather Edward, MD – Section onPediatric TraineesElaine Stedt, MSW, ACSW –Administration for Children, Youth andFamilies, Office on Child Abuse andNeglect

STAFF

M€uge Chavdar, MPH

AAP COUNCIL ON INJURY, VIOLENCE,AND POISON PREVENTION, 2019–2020

Benjamin Hoffman, MD, FAAP,ChairpersonPhyllis F. Agran, MD, MPH, FAAPMichael Hirsh, MD, FAAPBrian Johnston, MD, MPH, FAAPSadiqa Kendi, MD, CPST, FAAPLois K. Lee, MD, MPH, FAAPKathy Monroe, MD, FAAPJudy Schaechter, MD, MBA, FAAPMilton Tenenbein, MD, FAAPMark R. Zonfrillo, MD, MSCE, FAAPKyran Quinlan, MD, MPH, FAAP,Immediate Past Chairperson

LIAISONS

Lynne Janecek Haverkos, MD, MPH,FAAP – National Institute of ChildHealth and Human DevelopmentJonathan D. Midgett, PhD – ConsumerProduct Safety CommissionBethany Miller, MSW, MEd – HealthResources and Services AdministrationJudith Qualters, PhD, MPH – Centersfor Disease Control and PreventionAlexander W. (Sandy) Sinclair –National Highway Traffic SafetyAdministrationRichard Stanwick, MD, FAAP –Canadian Pediatric Society

STAFF

Bonnie Kozial

SECTION ON CHILD DEATH REVIEW ANDPREVENTION, 2019–2020

Erich Batra, MD, FAAP, ChairpersonKirsten A. Bechtel, MD, FAAPCarol D. Berkowitz, MD, FAAPHoward W. Needelman, MD, FAAPVincent J. Palusci, MD, MS, FAAP

LIAISON

Abby Collier, MS – National Centerfor Fatality Review and Prevention

STAFF

Bonnie Kozial

ABBREVIATIONS

AAP: American Academy ofPediatrics

ICD: International StatisticalClassification of Diseases andRelated Health Problems

ICD-10: International StatisticalClassification of Diseasesand Related HealthProblems, 10th Revision

ICD-10-CM: InternationalStatisticalClassification ofDiseases and RelatedHealth Problems,10th Revision, ClinicalModification

ICD-11: International StatisticalClassification of Diseasesand Related HealthProblems, 11th Revision

NAME: National Association ofMedical Examiners

NIH: National Institutes of HealthSIDS: sudden infant death

syndromeSUID: sudden unexpected infant

deathWHO: World Health Organization


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The findings and conclusions in this article are those of the authors and do not necessarily represent the official position of the Centers for DiseaseControl and Prevention.

DOI: https://doi.org/10.1542/peds.2021-053746

Address correspondence to Carrie K. Shapiro-Mendoza, PhD, MPH. E-mail: [email protected]

PEDIATRICS (ISSN Numbers: Print, 0031-4005; Online, 1098-4275).

Copyright© 2021 by the American Academy of Pediatrics

FINANCIAL DISCLOSURE: The authors have indicated they have no financial relationships relevant to this article to disclose.

FUNDING: No external funding.

POTENTIAL CONFLICT OF INTEREST: The authors have indicated they have no potential conflicts of interest to disclose.

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half century since sids: a reappraisal of terminology

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