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Identifying the causes of stillbirth and neonatal (perinatal) death through appropriate diagnostic investigations is an essential component of quality care for parents and families/whānau. Parents need the best possible information to help them understand why their baby died and to guide care in subsequent pregnancies.1,2 Accurate information on the cause of death is also necessary to inform effective prevention strategies.3
The quality of information and counselling parents receive about their options can have a significant impact on their decision making around investigations, grieving process, and long-term social and emotional wellbeing.4,5 However, most stillbirths are not appropriately investigated, many remain unexplained,2 and parents often report inadequate counselling.
A wide variety of tests and investigations are potentially available. These differ in the level of expertise required, how invasive they are, and their economic costs.1 While robust evidence to inform the optimal approach is lacking, autopsy combined with genetic testing, placental pathology along with a comprehensive history, and other testing depending on the clinical scenario or initial findings is considered optimal.6 Congenital anomalies account for around one-third of perinatal deaths in Australia and Aotearoa New Zealand,7,8 underscoring the importance of appropriate investigation to determine cause and risk of recurrence.
Perinatal autopsy rates for Australia and Aotearoa New Zealand are 41%7 and 34%9 for stillbirths and 27%7 and 24% for neonatal deaths,9 respectively. However, variation in perinatal autopsy rates across Australia indicates higher rates may be possible. In 2020, the highest rates were in Western Australia (57%)10 and South Australia (56%),11 compared to 38% in Queensland12 and Tasmania.13
Alternative less invasive options to a full autopsy include a limited autopsy and magnetic resonance imaging (MRI) where available. However, these approaches may limit the information used to establish the specific cause of death or factors that may have contributed to the death.
Whether to have an autopsy is one of the most difficult decisions a parent must make following the death of their baby.1,14 Discussing postmortem investigations and seeking consent for autopsy can potentially be a very challenging conversation for healthcare professionals, however these discussions are crucial in supporting parents’ decision making to understand why their baby died.
The objective of this section is to provide guidance for frontline healthcare professionals who care for parents and families/whānau in maternal and newborn care services in Australia and Aotearoa New Zealand. This may include doctors, midwives, nurses, social workers, psychologists, Aboriginal and Torres Strait Islander health workers and practitioners as well as Aboriginal liaison officers, and community-based healthcare professionals including community first responder organisations (e.g. ambulance services). This guideline is also for healthcare professionals who care for families/whānau in the transition from hospital to community and provide longer-term ongoing support. Other healthcare professionals such as sonographers, pathologists, and radiologists may also find this guideline helpful in identifying the cause of a baby’s death. Healthcare professionals will apply this guideline according to their knowledge, skills, and role, as well as the geographical and cultural setting in which they provide care.
Strong multidisciplinary partnerships are essential to ensure optimal care for parents in identifying the cause of their baby’s death.
This guideline uses parent-centred language that is intended to be inclusive of all affected by loss. We use the term ‘woman’ throughout the guideline to refer to the person who is pregnant and gives birth.9 We acknowledge diverse gender identities and that not all individuals who become pregnant and give birth identify as a woman. The term ‘parent’ is used to refer to expectant and bereaved mothers, fathers, and partners. It is important to recognise individuals who identify themselves as parents. However, we also acknowledge that not all individuals who experience perinatal loss consider themselves to be parents.10 This guideline uses ‘baby’ when referring to stillbirth and neonatal death because these terms are preferred by many bereaved parents. Terms such as ‘fetus’ may add to parents’ distress because this language denies personhood11 and is inconsistent with recognition of parenthood that is crucial to providing respectful and supportive care.
This guideline uses ‘healthcare professional’ to denote all those working with bereaved parents and family/whānau (see Glossary).
There was an obligation as parents to find out what had gone wrong and to obtain factual information for themselves, for their baby, and for future children. Emotionally, the desire to protect their baby from further harm was strong, as was the desire “to be a good mother”.
For some mothers this meant leaving their baby’s body intact “…complete, innocent and perfect as he was”; for others this meant proceeding with autopsy as “we owed it to our little man.”
Bereaved parents, Australia.16
Level 3, Aubigny Place
Mater Research Institute
Raymond Terrace,
South Brisbane QLD 4101
The University of Queensland Faculty of Medicine
