Author: Sandi Angus, Lisa Kehler / Editor: Lauren Fraser / Codes: RC5, SLO5, SLO7Published: 16/01/2023

The sudden, unexpected death of an infant or child is a devastating event for the family and those involved in caring for the child in any capacity. A proportion of these deaths will arise due to previously unrecognised medical conditions, or as the result of an incident – intentional or otherwise, but a significant number are unexplained. The families should be cared for with empathy and compassion and should be clearly communicated with as to processes and procedures that will subsequently need to take place.

In England, it has been a legal requirement for all unexpected childhood deaths to be jointly investigated by Healthcare, Police and Children’s Social Care Services1 in the form of Child Safeguarding Practice Reviews (CSPRs). We will briefly explore what this entails, along with what our role is as Emergency Medicine clinicians.

Studies show that a significant proportion of sudden unexpected deaths in infant and children are associated with adverse environmental conditions2. Many of the recognised risk factors overlap with those for child abuse and neglect, and it is therefore not surprising that these tragic deaths occur predominantly in families of low socio-economic status (SES). We will cover this in further detail along the course of the module, along with our role in promoting behaviours such as safe sleep and smoking cessation to parents and carers we encounter in the Emergency Department.

SUDIC is the acronym for “Sudden Unexpected Death in Infancy and Childhood” and encompasses all cases in which there is a death (or collapse leading to a death) of a child, which would not have been reasonably expected to occur 24 hours prior and in whom no pre-existing medical cause of death is apparent3.

It is a descriptive term used at the point of presentation, and will therefore include deaths for which a cause is ultimately found.

Other relevant terminology3

SUDI (sudden unexpected death in infancy) – as above, but used to refer to infants up to 24 months of age.

SUDC (sudden unexpected death in childhood) – as above, but refers to children over 24 months of age.

SIDS (sudden infant death syndrome) – refers to the sudden and unexpected death of an infant under 12 months of age, with the episode apparently occurring during normal sleep, and which remains unexplained in spite of thorough investigation, including a post-mortem examination, examination of the scene of death and review of the clinical history.

What term should I use?3

It is recommended by RCPath that, professionals working together in response to unexpected child deaths, should use the terms “SUDI/SUDC” at the point of presentation.

Once a clear medical or external cause is established, those deaths can be referred to accordingly.

Infant deaths under 12 months of age that meet the criteria for SIDS can be labelled as such.

How do I know if a death is unexpected?3

If there is any uncertainty about whether the death is unexpected, you should consult the designated paediatrician responsible for child death.

Special Circumstances3

If a death occurs in a newborn, it is classified as a stillbirth if a midwife is present, and a SUDIC if a midwife is notpresent.

Learning bite

Any unexpected child death is classified as a SUDIC at the point of presentation to the Emergency Department, regardless of whether a cause of death is found subsequently.

Causes

Research has shown that there are several maternal and infant factors which are associated with babies who die from SIDS, although the mechanisms of these risk factors are still poorly understood4.

Not all of these factors are modifiable either; but some are amenable to change and there may be opportunities to educate parents on these opportunistically on attendances to the ED. However, it is important to note that there is no advice that guarantees prevention of SIDS4.

Data from epidemiological studies indicate that the numerous risk factors for SIDS act together to increase or decrease the chance of death. This is known as the “Triple Risk Hypothesis”5:

  1. The infant is vulnerable (e.g. they have a physiological abnormality of some kind)
  2. The infant is at a critical period of development (e.g. the first six months of life, when SIDS is more common)
  3. There is an external factor in action that serves as a physiological stressor to the infant, (e.g. being placed prone to sleep and having their breathing compromised).

Take a few minutes to watch this Safer Sleep For Babies video from the Lullaby Trust and then move onto the SAQ to test your knowledge of Safe Sleep.

Risk Factors: at a glance

Risk Factor Factors increasing risk further Advice to parents
Prone/side sleeping position
  • Low birth weight (<2.5kg/5.5lbs)
  • Pre-term (<37 weeks)
  • IUGR
Always place an infant to sleep on their backs at the start of every sleep period.
Co-sleeping (beds, sofas or armchairs)
  • Low birth weight (<2.5kg/5.5lbs)
  • Pre-term (<37 weeks)
  • IUGR
  • Smoking
  • Alcohol/drug consumption by parent
  • Excessively tired parent
Avoid sleeping with baby on a sofa, avoid bedsharing where alcohol/drugs/cigarettes have been consumed by either party, ideally baby should sleep in their own cot or moses basket.

If bedsharing is required, signpost to the Safe Sleep Guidance on Lullaby Trust7.

Temperature and overwrapping
  • Prone sleeping
Check room temperature is not too hot and that clothing and bedding is appropriate.

Babies should not wear hats to sleep either during day or night.

Signpost to the Lullaby Trust’s guide8.

Soft sleeping surfaces/loose bedding
  • Prone sleeping
Remove pillows, duvets and quilts.

The sleeping surface should be firm enough that it does not indent/conform to the shape of the baby’s head.

Place baby feet-to-foot of cot to prevent them wriggling down under covers.

There is no established link between SIDS and products such as nests or pods, specifically marketed for infant sleep. They are, however, not recommended for use by The Lullaby Trust.

Second-hand mattresses (The mechanism is unclear but thought to be related to bacterial carriage and allergens) Avoid second-hand mattress use (risk has not been found to be significant if it is from the same home and used previously, e.g. for a sibling).

Covering it with a waterproof mattress protector will help keep it clean and dry.

Poor antenatal care (Later initiation and fewer appointments potentially increase likelihood of pre-term birth and IUGR) Encourage timely booking and attendance at all antenatal appointments.
Maternal smoking during pregnancy

 

Household smokers after birth

(Increases likelihood of pre-term delivery, low birth weight and IUGR)

(Greater susceptibility to bacterial and viral infections9)

Offer smoking cessation advice to parents
Drug and alcohol use
  • Co-sleeping under the influence

Substance misuse is related to other SIDS risk factors such as low SES, poor antenatal care, low birth weight, infant neglect.

(Impair parental decision-making around baby’s safety)

Offer drug and alcohol liaison services to parents.

 

Complete a referral.

Strongly encourage parents to make alternative care arrangements for baby for the whole night if they plan to drink or use drugs.

Other maternal factors, e.g. young age, increased parity, short inter-pregnancy interval, twin pregnancy, low SES, previous safeguarding concerns, family history of SUDIC (Likely to be due to increased risk-taking behaviour, poor engagement with healthcare services, mental ill-health, increased likelihood of child being in a neglectful environment10) Encourage engagement with midwifery and health visiting teams and GP.

Learning bite 

There is evidence to show that where parents are able to understand the mechanisms of risk (e.g. accidental suffocation whilst sleeping in an armchair) that they are more likely to trust the message and adhere to the advice10.

Protective factors to decrease the risk of SIDS:

Room sharing. Baby should sleep in the same room as the parents, day and night, for the first 6 months.

Breastfeeding. This needs to occur for a minimum of 2 months to be protective, and can either be exclusive breastfeeding or mixed feeding with formula. Greater protection is seen with longer durations of breastfeeding.

Dummy/Pacifier use. Consider offering a dummy to settle baby to sleep (if breastfeeding, establish this for a month before introducing the dummy). Use the dummy as part of the sleep routine thereafter. Withdraw the dummy between 6-12 months of age to avoid problems associated with dummy use (like dental malocclusion and ear infections).

Immunisations. Ensure baby received all of their scheduled vaccinations.

The Correct Sleeping Environment

correct sleeping environment

Fig.1 The Lullaby Trust. Spot the Risks. London: The Lullaby Trust.

Learning bite

Consider each encounter with parents in the Emergency Department as a “reachable moment” to enforce safe sleep messages and to target any appropriate protective work.

The Resuscitation

Do we always do CPR?

There is no hard, fast rule about whether a resuscitation should be attempted on an infant or child that is found dead out-of-hospital. However, the vast majority of paramedics would start CPR and we need to be mindful of the effect on the paramedic crew, the parents and our own staff members of not being seen to continue with resuscitation efforts.

As with all cardiac arrests, continuing with the resuscitation also gives us the opportunity and time to gather facts and get the whole multi-disciplinary team together to come to a team consensus to stop resuscitation. It also gives the parents the opportunity to have resuscitation attempts stopped and their child “die” in their arms.

What is the outcome in resuscitation of SUDIC cases?

A local audit by Kehler et al.11 found that only very few children gain a cardiac output, and this is often after prolonged resuscitation of over 15 minutes. The neurological outcome is incredibly poor, and these patients often end up having care withdrawn on PICU later down the line.

What do we do in the Emergency Department?

The sequence of actions below is an example of good practice. You should follow your local hospital guidance to ensure all the appropriate local agencies are informed.

  1. Alert the Acute Consultant Paediatrician on-call. In most Trusts, the designated paediatrician for child deaths will not be available out of hours, in which case the Consultant Paediatrician on-call should attend.
  2. Liaise with police present to ensure that the Senior Investigating Officer (SIO) is en-route or present. If the child has arrived by ambulance, the ambulance service will usually have alerted the police to attend.
  3. Allocate a member of staff to remain with the parents and support them through the process. Some hospitals have access to SUDIC Clinical Nurse Specialists specifically for this role. The family must not be left alone with the deceased child.
  4. If resuscitation is ongoing, give the family the option of being present. This is best practice and recommended by both the European Resuscitation Council (ERC) and the Resuscitation Council UK (RCUK). If they choose to be present, the allocated staff member should accompany the family throughout this period to explain what is going on.
  5. If resuscitation is going to be stopped, inform the parents and give them the option of holding their child as care is withdrawn. Confirm and document the date and time, and document the resuscitation itself, including all activities, interventions and drugs used. You must document all attempts at procedures such as cannulation; not just successful ones.
  6. Leave any lines and tubes in place and only remove them following discussion with the police Senior Investigation Officer (SIO). ET tubes must also only be removed after confirmation of correct placement by direct laryngoscopy – by somebody other than the person who placed the tube. This person must be competent to intubate. The local coroner will usually have provided guidance on this and you should follow the local coroner’s advice.

If any equipment was difficult to insert or may have contributed to death, it must be left in situ.

Learning bites

  • It is good practice to offer family-witnessed resuscitation at paediatric resuscitations. Some may want this, others may not.
  • In the words of a nurse, “It has been my experience that families deal better with ‘knowns’ than ‘unknowns’. I find that what families actually see is invariably better than their fantasies”16.
  • The time any resuscitation efforts are stopped is not the time of death. The time of stopping of resuscitation and the time of death should both be clearly recorded, with a period of a minimum of five minutes of observation in between, to establish that irreversible cardiorespiratory arrest has occurred.

Verification of death is the procedure of determining whether a patient has actually died, and is a physiological assessment to confirm death. It can be carried out by any appropriately trained and qualified medical practitioner, but is usually performed by the senior paediatrician in a SUDIC case.

Certification of death is the legal process of completing the medical certificate of cause of death. This can only be carried out by a medical practitioner or coroner.

NOTE: the time any resuscitation efforts are stopped is NOT the time of death. A minimum of five minutes should lapse until death is verified. However, both times must be recorded.

History and Examination

Once death has been confirmed and verified, the following steps are mostly likely to be carried out and led by the Paediatric Team. However, it is useful to have an awareness of the steps in the process, in order to support it or to help answer questions from the family.

As soon as possible after arrival at the hospital, a detailed history should be taken from the parents/carers and the child should be examined fully by a consultant paediatrician before the body is taken to the mortuary. This is because findings such as skin marks, livido and bruising may change before the post-mortem examination and these may be lost if not documented.

Lividity

Fig.2 Lividity is seen as red areas in the first 2-6 hours after death. Image courtesy of Susan Angus.

This is usually documented with body charts (see below), and the police SIO is usually present.

Fig.3 Example of body charts. Brindley, J. and Williams, C. 2020. Guidelines for Management of Sudden Unexpected Death in Infancy/Childhood. 9th version. Wolverhampton: Royal Wolverhampton NHS Trust

Mementoes such as hand and footprints, a lock of hair and photographs may be offered, providing it does not interfere with any investigation. If the parents are separated, both parents should be offered a memory box.

Learning bite

It is normally appropriate to allow the family to hold and spend time with their child once death has been confirmed, but they should not be left alone unsupervised with the child.

Investigations

These should be undertaken using the same aseptic technique that would be used in life. Samples sites must be recorded and all samples properly documented and labelled in order to maintain an unbroken chain of evidence. This may mean handing the specimens to a police officer directly or having the lab technician sign for them on receipt.

1.Bloods

Approx 8-10mls is needed in total.

Blood samples from an arterial or venous site. Cardiac puncture can also be used, but this should be a single attempt using a substernal approach by an experienced person.

The earlier these are done, the more reliable the results are likely to be. There is often a delay of several days before the post-mortem is performed.

Sample Purpose of test
FBC, U&Es, LFTs Infection, electrolyte disturbances, renal failure, liver failure
Cultures Infection
Microarray Genetic abnormalities
Toxicology Poisoning (intentional and non-intentional)
Inherited Metabolic Diseases (IMD) Guthrie card for specific metabolic disorders
Amino Acids Metabolic disorders

2. Cerebrospinal Fluid (CSF)

Perform an LP to screen for infection.

Send CSF for microbiology and clinical chemistry

3. Nasopharyngeal Aspirate (NPA)

Send if less than 8 hours post-mortem to identify viral infections.

4. Urine

Obtain samples from a supra-pubic aspirate, an in-out catheter or squeeze out of an unsoiled nappy.

Send for toxicology, inherited metabolic diseases and microbiology.

5. Skin biopsy for fibroblast culture

This is to identify specific metabolic and genetic disorders.

It is taken from the upper, inner arm and put in viral culture medium which is then refrigerated.

6. Full skeletal survey including a CT head

This is routine for those under 2 years. Over 2 years, this is performed on a case-by-case basis. They should be reported on by a paediatric radiologist

7. Any additional tests that may be appropriate according to the clinical presentation, e.g.

  • Bloods for carbon monoxide testing in suspected smoke inhalation
  • Microbiology swabs of any wounds
  • Muscle biopsy if there is potential of Inherited Metabolic Disease or mitochondrial disease.

The Joint Agency Response

Police will automatically attend the department when they are notified by Ambulance Control that a child has been found dead or collapsed. Initially, uniformed police officers may attend, but they will handover promptly to specialised plain-clothed police officers.

Children’s Social Care should also be notified as they are part of the rapid response team. They may not be able to attend the Emergency Department out of hours, but the Duty Social Worker should be able to provide vital information on whether the family is known to them and whether there are child protection plans in place.

Before the family leave the department, there should be an initial information-sharing and planning discussion between these bodies. In particular, there should be consideration of the safety and wellbeing of any other children in the household.

In the event of a SUDIC of a twin aged under 2 years, the surviving twin is usually admitted to hospital for a period of observation.

What are the rules regarding organ donation?

As, by definition, the cause of death in SUDI is not known, it is important that all organs are examined carefully during the post-mortem examination. For this reason, organ donation is not a possibility in the case of SUDIC.

The senior investigating police officer and senior healthcare professional decides whether there needs to be a home visit,how soon this needs to occur (usually within 24 hours) and who should attend.

Following this, within the first 48 hours, there is then an Initial Multiagency Meeting which is led by one agency. It can take many months to gather all of the information required, but the purpose of this initial meeting is to:

  • Share the initial information available, including the medical history and examination.
  • Determine what further information may be needed and who is tasked with gathering it.
  • Consider whether there are any immediate child protection concerns to be actioned (e.g. to other siblings).
  • Consider whether there are any health risks to other family members that have not yet been addressed.
  • Arrange support for the family.

In all SUDIC cases, the lead health professional reports the child’s death to the Coroner as per local protocol. The Coroner then has jurisdiction over the child’s body and will order a post-mortem by a Pathologist. Information collated by the Paediatrician attending the child is shared with the Pathologist at this point.

Once the initial post-mortem results become available, the designated paediatrician for unexpected child deaths holds a local multiagency case discussion, where the information is reviewed again in case any concerns are raised about safeguarding issues.

If the cause of death cannot be ascertained, or is unnatural, the Coroner holds an inquest, where those involved in the Child Death Review Process submit a joint report about the circumstances of the child’s death, to include a review of all medical, social care and educational records on the child.

At the end of this entire process, all child deaths in England are reviewed by the Child Death Overview Panel (CDOP) which is established by the Local Safeguarding Children Partnership (LSCP).

What is the child death overview panel?

The CDOP is responsible for:

  • reviewing all child deaths up to the age of 18 years (excluding stillbirths and lawful planned terminations)
  • collecting and collating information on each child from professionals and family
  • discussing each child’s case, and agreeing who will provide feedback to the family, in an appropriate and timely manner
  • establishing if there were any modifiable factors leading to the child’s death and decide what, if any, actions could be taken to prevent such deaths in future
  • making recommendations to the LSCP or other relevant bodies promptly, so that action can be taken to prevent future such deaths where possible
  • identifying patterns or trends in local data and reporting these to the LSCP
  • where a suspicion arises that neglect or abuse may have been a factor in the child’s death, referring a case back to the chair of the LSCP to consider whether a CSPR is required

The aggregated findings from all child deaths should inform local strategic planning, including the local joint strategic needs assessment, on how to best safeguard and promote the welfare of children in the area.

Timeline flow chart1

Joint agency response

Fig.41

  • Remember not to remove the endotracheal (ET) tube until the position has been checked by a second clinician who is competent to intubate.
  • Document all attempts at cannulation and intraosseous (IO) access, including the unsuccessful ones.
  • Once the child has been confirmed to be dead, do not send any investigations via the pod system. They must be walked to the lab to be handed over in person, and the chain of evidence form completed.
  • The attending police may be unsure of the rules around the parents’ access to the child once they have been confirmed as dead. Try to avoid any conflict as they will be doing so from the viewpoint that the death is a potential crime until proven otherwise, but encourage them to discuss with their seniors.
  • Remember to keep the nappy and any clothes that the child was wearing on arrival, as they may contain vital evidence.
  • The parents/carers will remember what they see and what is said forever. The resuscitation must be seen to be professional and thorough, and communication during and afterwards is vital. Make sure that you are fully prepared before you speak to them. The assigned nurse needs to be senior and experienced enough to manage this important role appropriately.
  • Try and assign a nurse to the parents who is not near the end of their shift, wherever possible. This means that they can continue to care for the parents throughout the whole process. Be mindful of how stressful this is for the nurse in question.
  • All members of the multi-disciplinary team are likely to be traumatised. A “hot” and “cold” debrief are often beneficial and should be considered as part of the protocol.
  1. HM Government. 2018. Child Death Review: Statutory and Operational Guidance (England).[Online]. London: HM Government. [Accessed 28 January 2022].
  2. Blair PS, Sidebotham P, et al. Major epidemiological changes in sudden infant death syndrome: a 20-year population-based study in the UK. Lancet. 2006 Jan 28; 367: pp314-9.
  3. The Royal College of Pathologists. 2016. Sudden unexpected death in infancy and childhood: Multiagency guidelines for care and investigation. [2nd edition]. [Online]. London: The Royal College of Pathologists. [Accessed 28 January 2022].
  4. The Lullaby Trust. 2019. Full Evidence Base. [Online]. London: The Lullaby Trust. [Accessed 9th February 2022].
  5. Filiano JJ, Kinney HC. A perspective on neuropathologic findings in victims of the sudden infant death syndrome: the triple-risk model. Biol Neonate. 1994;65(3- 4):194-7.
  6. The Lullaby Trust. Spot the Risks. [Online]. London: The Lullaby Trust. [Accessed 9th March 2022].
  7. The Lullaby Trust. Co-sleeping with your baby. [Online]. London: The Lullaby Trust. [Accessed 9th March 2022].
  8. The Lullaby Trust. The safest room temperature for babies. [Online]. London: The Lullaby Trust. [Accessed 9th March 2022].
  9. Gordon AE, El Ahmer OR, et al. Why is smoking a risk factor for sudden infant death syndrome? Child Care Health Dev. 2002 Sep;28 Suppl 1:23-5. doi: 10.1046/j.1365-2214.2002.00007.x. PMID: 12515434.
  10. The Child Safeguarding Practice Review Panel. 2020. Out of routine: A review of sudden unexpected death in infancy (SUDI) in families where the children are considered at risk of significant harm. [Online]. Gov.UK. [Accessed 9th March 2022].
  11. Kehler L & Schofield B (2013). Pre-hospital airway management in paediatric cardiac arrest: A retrospective cohort study. 1st European Paediatric Resuscitation and Emergency (PREM) Conference. 2013 May. Belgium.
  12. Jabre, P, Belpomme V, Azouley E, et al. Family presence during cardiopulmonary resuscitation. N Engl J Med. 2013 Mar 14;368(11):1008-18.
  13. American Association of Critical Care Nurses (2016). Family Presence During Resuscitation and Invasive Procedures. Critical Care Nurse. 36, 1, E11-E14. doi: 10.4037/ccn2016980.
  14. Al-Mutair AS, Plummer V, Copnell B. Family presence during resuscitation: a descriptive study of nurses’ attitudes from two Saudi hospitals. Nurs Crit Care. 2012 Mar-Apr;17(2):90-8.
  15. Breach J. Exploring the implementation of family-witnessed resuscitation. Nurs Stand. 2018 Apr 28;33(1):76-81.
  16. Critchell CD, Marik PE. Should family members be present during cardiopulmonary resuscitation? A review of the literature. Am J Hosp Palliat Care. 2007 Aug-Sep;24(4):311-7. doi: 10.1177/1049909107304554.
  17. Bossaert, L, Perkins G.D, et al. European Resuscitation Council guidelines for resuscitation Section 11: The ethics of resuscitation and end-of-life decisions. Resuscitation. 2015 Oct;95:302-11.

Additional Resources