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Parents devastated by the sudden death of an infant may not be aware that they can ask for the child’s death to be investigated thoroughly.
A research letter published today in The Medical Journal of Australia states that the investigation processes for sudden unexpected death in infancy (SUDI) in Australia do not meet international standards.
Although sudden infant death syndrome (SIDS) refers to infant deaths up to 12 months of age that remain unexplained after investigation, SUDI is the term initially given to all unexplained deaths of infants up to 12 months of age, regardless of whether a cause is later determined.
Between 2005 and 2015, 113–143 infant deaths in Australia were classified as SUDI each year.
Researchers at the University of Sydney, led by Professor Heather Jeffery, undertook a survey of Australian chief state coroners from all eight Australian jurisdictions in 2018 to determine what investigation processes are being undertaken. The results of this survey are the basis for the research letter being published today.
The survey was developed with advice from the National Scientific Advisory Group of the charity Red Nose Australia.
Their survey questions included details about:
- the first responders;
- the death scene investigation;
- the medical history collected;
- post mortem examination;
- the communication with parents; and
- the proportion of cases where a cause of death was determined.
The survey responses showed that despite considerable variation in how SUDI cases are investigated, the process is predominantly led by police. This includes police-led recording of history, death scene investigation, and even communicating post mortem findings to parents.
The survey authors found that this police-led model does not meet minimum best practice standards for a SUDI investigation.
“The consequences of police-led rather than doctor-led [investigations] include missing vital historical information and detail with regard to the infant, the parents and the family,” Professor Jeffery told InSight+.
“Police are not trained in paediatrics and not expected to fulfill this role. The interpretation of likely cause of death requires the best practice information including the history, pathological and investigatory findings to define a differential diagnosis and possible definitive diagnosis.”
The standards of SUDI investigation are defined in the United Kingdom’s Kennedy report (second edition, 2016). It outlines the need for paediatric specialist involvement throughout the process, including recording of medical history, death scene investigation and final case discussion. A thorough genetic history by medical professionals is especially important as more genetic causes of SUDI are discovered.
“The medical history [of the infant] requires a person with training in paediatrics,” Professor Jeffery said.
“The management of parents, including how questions are asked, how and where the baby was found, using a doll to recreate the scene … and providing close follow-up of parents is best undertaken by paediatric health professionals.”
The article authors argue that Australia must move away from police-led investigations and incorporate more paediatric specialist involvement in order to meet international best practice standards.
“Frequently, the police approach SUDI as a criminal investigation and parents find this sometimes disconcerting, adding to their distress, especially as the vast majority are not homicide or abuse,” she said.
“The combined approach of a paediatric professional together with police to undertake the history and death scene investigation is valuable.”
The survey authors found that most parents experiencing SUDI are not aware that a proper investigation has not happened.
“This is the conclusion of my co-authors and myself based on previous interviews with parents, and questions they ask,” she said.
“Many doctors, I suggest, would [also] be unaware that police largely take [records of] the [medical] history.”
Professor Jeffery said change must be led by coroners and include multi-agency collaboration with a health care professional as well as police to bring national processes up to international standards.
Red Nose CEO Keren Ludski said police protocols could be greatly improved in Australia.
“For our families who have experienced a SUDI death, finding out why their baby died plays a significant role in their healing process.
“Families across Australia deserve to have consistent and standardised protocols regardless of where they live when it comes to the SUDI investigation process. We know the ongoing improvements in police protocols in regard to SUDI deaths have made a huge difference to families … However, we also consistently hear from families that having a police presence at such a difficult time exacerbates their feelings of guilt, shame and can cause further stress for families.
“Rightly or wrongly, having police turn up at your house has a stigma of having done something wrong attached to it. The presence of a health professional with a strong understanding of SUDI protocols would benefit the family in two ways: they could collect a thorough history, whilst also supporting the family through this acute trauma.”
Similarly, recent UK research found parents may not always be afforded the privacy to hold their deceased child.
“After a child has died, parents wish to be able to say goodbye to them at the hospital or emergency department, they would like time and privacy to see and hold their child,” the researchers from Warwick Medical School wrote.
“Parents may bitterly regret not being able to do so. Parents need to know the full details about their child’s death and may feel that they are being deliberately evaded when not given this information. Parents often struggle to obtain and understand the autopsy results even in the cases where they consented for the procedure.”
Guidelines from the National Institute of Health state that babies are at higher risk of SIDS if they:
Sleep on their stomachs or side, especially if babies:
- sleep on soft surfaces, such as an adult mattress, couch, or chair or under soft coverings;
- sleep on or under soft or loose bedding;
- sleep on a sofa (with or without a parent);
- sleep with face or head covered;
- get too hot during sleep;
- are exposed to cigarette smoke in the womb or in their environment, such as at home, in the car, in the bedroom, or other areas.
Sleep in an adult bed with parents, other children, or pets; this situation is especially dangerous if:
- the adult smokes, has recently had alcohol, or is tired;
- the baby is covered by a blanket or quilt;
- the baby sleeps with more than one bed-sharer;
- the baby is younger than 11–14 weeks of age.
Babies who usually sleep on their backs but who are then placed to sleep on their stomachs, such as for a nap, are at very high risk for SIDS.
You can read the research letter in today’s edition of The Medical Journal of Australia.
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