Approaching Terminology
When an infant or young child dies suddenly or unexpectedly, it’s important to understand the wide spectrum of terminology often used regarding the cause and manner of death. Unfortunately, terms can be commonly misused or misunderstood by professionals, even when they speak with authority, which can complicate a grieving family’s already agonizing experience. It’s important to remember that only a medical examiner or coroner can determine what the final cause of death is, and it may take weeks, months, or even longer. If professionals make independent declarations of cause/manner of death early on in the process (such as stating “this looks like SIDS” in the Emergency Department), they may not have a full grasp of the investigatory process and are likely speaking prematurely.
Terms for Infant Death
Many sudden and unexpected deaths in infancy are classified as a Sudden and Unexpected Infant Death (SUID). SUID means the death of an apparently healthy infant under one year of age, with no immediately obvious presenting cause of death. SUID is an umbrella term, which means that there are different types of SUIDs, including:
Sudden Infant Death Syndrome (SIDS): SIDS, just like SUID, refers to the death of an apparently healthy infant under one year of age, with no immediately obvious presenting cause of death. However, distinct from other types of SUID, SIDS means that the cause of death remains unknown even after a thorough autopsy and investigation of the death circumstances. SIDS is known as a “diagnosis of exclusion” because it is not a “cause” or a “thing” that happens, but instead the absence of a known “cause” or “thing”; all other possible or potential causes of death have been ruled out. It can take an especially long time for medical examiners/coroners to arrive at a diagnosis of SIDS, because of the time it takes to rule everything else out. Many researchers, including those at the Robert’s Program, are working to forensically understand “what” SIDS is, which is likely a combination of factors. The “triple risk" model illustrates this further.
Accidental Suffocation and Strangulation in Bed (ASSB): ASSB is a type of SUID involving a specific cause that has limited an infant’s ability to breathe. This may include strangulation or suffocation from a blanket or pillow, wedging between a mattress and wall, or overlay by somebody co-sleeping with the infant. Even if it may appear obvious that death was caused by a suffocation or strangulation, it’s important to allow medical examiners/coroners the time and information they need to make informed conclusions.
SUIDs of Undetermined or Unknown Cause: SUIDs of Undetermined/Unknown Cause are different than SIDS. In order to conclude a diagnosis of SIDS, some medical examiners/coroners can feel that full due diligence must be met and “every stone must be turned” - that the “diagnosis of exclusion” means that everything else possible must be excluded. However, that diligence is not always available: investigations can be interrupted or inconclusive, administrative burden or backlog may mean that medical examiners/coroners aren’t able to dig as deeply as they may otherwise opt to, or they may hold personal philosophy that you can never truly rule out all possible causes of death and as such, arriving at SIDS is not feasible.
For the sudden or unexpected death of older children, terms like SUDP (Sudden Unexpected Death in Pediatrics) or SUDC (Sudden Unexpected Death in Childhood) may be used. The SUDC Foundation works to raise awareness and and fund research related to sudden/unexpected deaths of older children.
These terms are confusing, and the lack of consistent definitions across jurisdictions or even between individual medical examiners/coroners within the same office, can make matters more confusing. Some may use different terms entirely, such as USID (Unclassified Sudden Infant Death), or SUDI (Unexpected Death in Infancy). Regardless, it’s important for both grieving families and those who support them to have general understanding of the current state of these terms, and to recognize how much further the professional community has to go in understanding and classifying these tragedies.
Terms for Pregnancy Loss
Pregnancy loss brings a distinct and deeply personal grief for parents. As with infant death, the use of complex or inaccurate terminology can unintentionally intensify the emotional pain experienced during these devastating experiences, making it extremely important for professionals to communicate with sensitivity, use accurate and compassionate language, and create a space where families feel seen, respected, and supported in their grief.
Miscarriage is the loss of a pregnancy before 20 weeks of gestation. Miscarriage can be used interchangeably with terms like spontaneous abortion or early pregnancy failure. There are many types of miscarriage, including:
biochemical miscarriage: occurs very early in pregnancy, typically before 6 weeks, when a pregnancy test may return positive, but before a fertilized egg can be seen on an ultrasound
early miscarriage: occurs before 12 weeks of pregnancy
late miscarriage: occurs between 12-20 weeks of pregnancy
missed miscarriage: the fetus has died, but the pregnancy tissue remains in the uterus without noticeable symptoms
incomplete miscarriage: some pregnancy tissue remains in the uterus, potentially requiring medical intervention
septic miscarriage: a miscarriage complicated by infection
Stillbirth is the death of a baby in the womb after 20 weeks of gestation. Stillbirth may also be referred to as fetal demise or intrauterine fetal demise (IUFD)
Extreme prematurity refers to a birth occurring at or before 25 weeks of gestation
A termination for medical reasons (TFMR) is the voluntary ending of a pregnancy due to medical reasons
An ectopic pregnancy is one when a fertilized egg implants and grows outside of the uterus, representing a medical emergency that could cause severe internal bleeding for the mother
A blighted ovum is when a pregnancy sac develops, but there is no fetus inside