Perinatal mortality in the ACT 2016-2020

Preface

MEMBERSHIP

Members of the ACT Perinatal and Maternal Mortality Committee between 2016–2023:

Neonatology

Dr. Amanda Dyson (Chairperson, current)
Professor Alison Kent
Professor Abdel-Latif Mohamed

Obstetrics and Gynaecology

Professor Boon Lim

Anatomical Pathology

Dr Mitali Fadia (current)
Professor Jane Dahlstrom

Epidemiology

Dr Louise Freebairn (current)
Rosalind Sexton (current)

Perinatal systems coordinator

Michelle Caddy-Gammel (current)
Lin Han
Jo Borrman
Brenda Glover

Fetal Medicine Unit

Dr Farah Sethna (current)

Clinical Midwife Consultant Canberra Hospital

Sally Bacon (current)
Wendy Alder

North Canberra Hospital

Michelle Thinius (current)
Christine Falez
Andrea Moore
Toni Gwynn-Jones

Clinical Midwife Consultant Calvary John James Hospital

Claire Reardon (current)
Antoinette Walsh
Sue Simms

Clinical Director Women’s & Infant’s Services, North Canberra Hospital (Obstetrician)

Dr Bhathiya Hannedege (current)
Dr John Hehir
Dr Alison Porteous

The ACT Perinatal and Maternal Mortality Committee Terms of Reference can be found in Appendix A.

ACKNOWLEDGEMENTS

The report authors, Dr Amanda Dyson, Brigitta Osterberger, Aidan Whitfield, Dr Louise Freebairn, and Rosalind Sexton, would like to acknowledge the contribution of the ACT Perinatal and Maternal Mortality Committee members (past and present) for their support and commitment to the work of the Committee.

We also acknowledge and thank all of the midwives and perinatal systems coordinators who provided information for this report by completing the ACT Perinatal Death Forms.

The ACT Perinatal and Maternal Mortality Committee members and authors acknowledge the immense grief and loss that is felt by all families and loved ones who experience the loss of a child. This report ensures that every loss is recognised and investigated so that lessons can be learnt and directions for research identified to reduce perinatal deaths.

COPYRIGHT

This work, Perinatal Mortality Report 2016–2020, is licensed under a Creative Commons Attribution 4.0 licence. You are free to re use the work under that licence, on the condition that you credit the Australian Capital Territory Government as author, indicate if changes were made and comply with the other licence terms.

The licence does not apply to the ACT’s Coat of Arms and any other symbols, logos or trademarks of the ACT or any ACT department or agency (unless incidentally reproduced in using an unaltered document under the Creative Commons licence). The licence also does not apply to any third-party material unless expressly stated to be published under the Creative Commons licence.

Produced for ACT Health by the Epidemiology Section. Publications in the Health Series can be accessed from the ACT Health Internet Homepage by using the link HealthStats and Epidemiology Publications.

Enquiries about this publication should be directed to The Chairperson, ACT Perinatal and Maternal Mortality Committee, Department of Neonatology, The Canberra Hospital PO Box 11, Woden ACT 2606 or via email to healthinfo@act.gov.au.

Suggested citation

ACT Health (2024). Perinatal Mortality in the Australian Capital Territory, 2016–2020, ACT Government, Canberra ACT.

CHAIRPERSON’S REPORT

We are pleased to present the fourth report of the ACT Maternal and Perinatal Mortality Committee (ACT PMMC), and I would personally like to thank all members, past and present, for their ongoing participation and commitment. We have had some longstanding members retire from the ACT PMMC in recent years and I would particularly like to recognize the huge contributions that Professors Alison Kent and Jane Dahlstrom have made to this Committee and to perinatal care in the ACT. Their expertise, enthusiasm and passion for teaching and research have led to Territory-wide improvements in perinatal care and perinatal mortality audit. Notable achievements, amongst many, include being inaugural members of the Committee, the development of the Canberra Hospital’s non-denominational service for stillborn babies lost before 20 weeks gestational age and changes to the ACT’s legislation around stillbirth registration for babies lost prior to 20 weeks gestation but born at or after 20 weeks.

The ACT PMMC was formed in 2002 by clinicians who recognised the importance of collecting perinatal mortality data to allow accurate reporting and comparisons of perinatal deaths within the ACT and nationally. The ACT PMMC meets five times per year and classifies all perinatal deaths in the ACT using the Perinatal Society of Australia and New Zealand — Perinatal Death Classification (PSANZ-PDC) and the Perinatal Society of Australia and New Zealand — Neonatal Death Classification (PSANZ-NDC) (see Appendix F). Due to the small number of perinatal deaths, a five-year report is the most appropriate timeframe to examine perinatal deaths in the Territory. I would like to acknowledge and thank the staff of ACT Health’s Epidemiology Section for their ongoing support in producing this report and their assistance in maintaining the Perinatal Mortality Database.

The COVID-19 pandemic began during this reporting period and has had far-reaching effects on the lives of all Australians. The pandemic led to many changes in healthcare delivery and reduced access to the in-person support of loved ones during challenging times. The incidence of perinatal and postnatal depression was shown to be higher during the first and second waves of COVID-19 in Australia in 2020.¹ Lockdowns in Victoria were shown to be associated with a reduction in spontaneous preterm birth prior to 34 weeks,² a finding also documented in European populations.³ A research group in Victoria found a reduction in iatrogenic preterm birth for fetal compromise during COVID 19 lockdowns alongside which there was an increase in preterm stillbirth, raising concerns about access to pregnancy care.⁴ The ACT experienced fewer lockdown periods than Victoria and so some of these findings may not be directly applicable to our population. The ACT showed a reduction in perinatal mortality rate in 2020 that could be due to improvements in care, the effects of the COVID-19 pandemic or statistical fluctuations, which can occur when dealing with small numbers. There will be ongoing learnings from the pandemic for years to come and the ACT PMMC will continue to monitor trends in perinatal mortality in the context of COVID-19 within the ACT.

During this reporting period there were many changes to maternity services in the ACT that are further detailed in this report. This includes the launch of the Preterm Birth Prevention Initiative, the launch of the Safer Baby Bundle, the launch of a single-entry point to public maternity services the Canberra Maternity Options Service (CMOS) and the availability of publicly funded homebirth. In December 2018, the Select Committee on Stillbirth Research and Education tabled its report on its nine-month inquiry into the future of stillbirth research and education in Australia. In August 2020, the ACT Government committed to implementing a range of recommendations in the ACT Government Response to the Inquiry into Maternity Services in the ACT (Inquiry) and in 2022 the ACT government launched the Maternity in Focus: The ACT Public Maternity System Plan 2022–2032.

The ACT PMMC will continue to monitor perinatal mortality and work to inform and support these initiatives in the ACT.

Dr. Amanda Dyson
Chairperson, ACT Perinatal and Maternal Mortality Committee

Executive Summary

Each year, the Australian Capital Territory (ACT) maternity system provides maternity and perinatal services to over 6,000 women, pregnant people and their families to support their pregnancy and birth journey.⁵ This equates to approximately 6,000 births per year in the Territory. Tragically, not all pregnancies or births go as planned. As a small jurisdiction, the number of deaths in the perinatal period (from 20 weeks of gestation to 28 days after birth) that occur in the ACT is relatively low. However, reviewing, classifying and reporting perinatal deaths provides a powerful tool for health professionals to improve procedures and practices to ensure that the ACT is a safe place to give birth. This report focuses on the epidemiology of perinatal deaths, including fetal deaths (death prior to birth; also known as stillbirths) and neonatal deaths (death within 28 days of birth) of babies born between 1st January 2016 and 31st December 2020. Not all fetal deaths and neonatal deaths are preventable, however, the purpose of this work is to inform clinicians, public health professionals, parents, and the public in their efforts to improve perinatal care in order to reduce perinatal mortality. The ACT Perinatal and Maternal Mortality Committee (the Committee) acknowledges and recognises that every number in this report represents the loss of precious life and that every one of those deaths counts.

Perinatal Mortality in the ACT 2016–2020 is the fourth report from the Committee on the epidemiology of perinatal deaths for the period 2016–2020, with a summary of the Committee’s key findings and recommendations.

Key findings

Perinatal deaths in the ACT

Between 2016 and 2020, 31,403 births occurred in the ACT. Of these, 31,154 (99.2%) were live births. A total of 328 perinatal deaths were notified in the Territory, of which 242 (73.8%) perinatal deaths were ACT resident mothers and 26.2% of perinatal deaths were reported for non-ACT resident mothers who gave birth in the ACT.

In this five-year reporting period, the perinatal mortality rate for ACT residents was 9.0 deaths per 1,000 total births. The fetal death rate was 6.8 deaths per 1,000 total births (n=183) and the neonatal mortality rate 2.2 deaths per 1,000 live births (n=59). In 2016–2020, perinatal deaths notified in the ACT were significantly higher among non-ACT residents (18.8 deaths per 1,000 births) compared to ACT residents, reflecting that women are transferred from regional areas into the ACT to receive care for their high-risk pregnancies.

There was no significant difference in the five-year combined perinatal, fetal or neonatal death rate for the ACT and Australia. In 2020, the ACT annual mortality rate for perinatal mortality (7.6 deaths per 1,000 births) was significantly lower than the rate reported for Australia (10.1 deaths per 1,000 births).⁶

It is important to note that perinatal mortality rates in the ACT fluctuate from year to year due to the small number of annual perinatal deaths. Therefore, a single event, for example the fetal death of triplets, can substantially increase mortality rates with such small annual numbers.

Maternal and baby characteristics

Perinatal mortality rates were highest among babies born to women aged under 20 years (21.9 perinatal deaths per 1,000 births) and women aged 40 years or over (12.5 perinatal deaths per 1,000 births), and being in these age groups is a known maternal risk factor for perinatal death.

In 2016–2020, low birthweight babies (those with a birthweight less than 2,500 grams) accounted for 6.7% of all births and 82.2% of all perinatal deaths in the ACT. Perinatal mortality was most common in babies who were small for their gestational age (21.5 deaths per 1,000 births) and perinatal mortality rates declined with increasing birthweight.

Preterm delivery (less than 37 weeks gestation) occurred in 7.8% of all births, and 82.6% of perinatal deaths. Extreme prematurity (less than 28 weeks gestation) occurred in 0.8% of all births and 63.2% of perinatal deaths. The most common causes of perinatal death in the ACT for babies born at term (37 weeks gestation) were unexplained antepartum fetal death, specific perinatal conditions, and hypoxic peripartum death.

Of all perinatal deaths, 9.9% were multiple births. The perinatal mortality rate for multiple births was 29.5 deaths per 1,000 multiple births in comparison to 8.4 deaths per 1,000 singleton births.

Causes of perinatal death

The primary causes of perinatal death as per the Perinatal Society of Australia and New Zealand Perinatal Death Classification (PSANZ-PDC) for ACT residents were congenital anomaly (32.8%) and placental dysfunction or causative placental pathology (15.3%). One in ten (10.7%) perinatal deaths were unexplained, which may have been the result of inadequate investigation or death occurring prior to 20 weeks gestation.

The most common causes of fetal death were congenital anomaly (32.8%), placental dysfunction or causative placental pathology (15.3%), and unexplained antepartum fetal death (14.2%).

The leading causes of neonatal death as per the Perinatal Society of Australia and New Zealand Neonatal Death Classification (PSANZ-NDC) in 2016–2020 in the ACT, were periviable infants (typically <24 weeks) (44.1%), neurological conditions (18.6%), and congenital anomaly (16.9%).

Post-mortem investigation of perinatal deaths

In 2016–2020, the perinatal autopsy rate for the ACT was 56.6 %, which compared favourably with the 2020 autopsy rate (37%) for perinatal deaths in Australia.⁶ However, it continues to be lower than the 75% recommended by the Royal College of Pathologists. A placental histological examination was performed in nine in ten (90.9%) perinatal deaths (90.7% of fetal deaths and 91.5% of neonatal deaths) in this five-year reporting period.

Recommendations

The following recommendations indicate areas that require attention to improve perinatal care in the ACT in order to reduce perinatal mortality in the Territory or recommendations to improve data quality or monitoring:

RECOMMENDATION 1

Ongoing data support should be provided to the Committee for data management and to incorporate the collection of perinatal data electronically to improve data quality. Support is required to ensure timely data collection and to facilitate timely review of cases. The Committee will continue to canvas options to facilitate formalised supports.

RECOMMENDATION 2

The Committee recommends the development of an ACT congenital anomaly register to enable reporting and monitoring of all congenital anomalies in the Territory, including assessment of the impact of known or suspected risk factors. This will inform effective management of health services.

RECOMMENDATION 3

Canberra Health Services should continue to ensure that immediate bereavement care is provided to parents. This includes supplying families with information to enable them to make informed decisions about perinatal post-mortem investigations, such as perinatal autopsy and placental histology examination. Healthcare professionals should be supported and trained in how to approach these grieving parents and families to discuss perinatal autopsy to try to minimise the proportion of perinatal deaths listed as unexplained. This education is available through the Improving Perinatal Mortality Review and Outcomes via Education (IMPROVE) workshops developed by the Stillbirth Centre of Research Excellence, which should be delivered in the ACT.

RECOMMENDATION 4

Canberra Health Services should continue to ensure that a high standard of perinatal autopsy is always available and should strive to achieve high autopsy rates with results of investigations being available within six to eight weeks. Research into the causes of unexplained antepartum death should continue to be encouraged.

RECOMMENDATION 5

Due to the revision of the PSANZ classification system, a direct comparison of fetal growth restriction (FGR) with previous reporting periods isn’t possible. However, the ACT must continue to monitor FGR-related perinatal deaths to minimise the proportion of babies not identified as growth restricted during pregnancy. The implementation of the Safer Baby Bundle should continue across the Territory and the surrounding areas of NSW.

RECOMMENDATION 6

The Committee should continue to monitor trends in contributory factors to identify inequities among groups who are at increased risk of fetal death.

RECOMMENDATION 7

The Committee should continue to monitor the incidence of late gestation stillbirths in the coming years following the launch of the Safer Baby Bundle initiative in the ACT with the aim of achieving the recommended goal of less than two late stillbirths per 1,000 births by 2030.

RECOMMENDATION 8

The Committee should review the hypoxic-ischemic encephalopathy (HIE) cases that occurred during the 2016–2020 reporting period given the hypoxic peripartum death rates in the ACT increased in 2016–2020. However, it should be noted that ACT rates were not significantly different from national rates. The Committee will continue to monitor the incidence of HIE and identify opportunities to improve care in the ACT. Following the establishment of a benchmark of HIE incidence, it will be monitored in the future.

Introduction

Perinatal Mortality in the ACT 2016–2020 is the fourth report from the ACT Perinatal and Maternal Mortality Committee (the Committee) on the epidemiology of perinatal deaths for the period 2016–2020 and the Committee’s recommendations on areas that require further investigation and attention.

Background

Australia remains one of the safest places in the world for a baby to be born. However, pregnancy, childbirth and infancy remains a time of vulnerability for mothers and their children. Tragically, around 3,000 families each year in Australia experience the loss of a baby who was either stillborn or died in the first four weeks of life.⁶

Over the past 20 years in the ACT, an average of 48 perinatal deaths were reported each year among residents of the ACT, with an additional 21 deaths recorded for women who reside outside of the ACT, but gave birth in the Territory. Perinatal mortality is an important indicator of the health status of a given population and reflects the risk of a baby being stillborn or a newborn not surviving beyond 28 days of life.

In the ACT, all perinatal deaths are reviewed by the Committee, which was established in 2002. The Committee has collected information regarding all perinatal deaths that occur in the ACT from 20 weeks gestation since 2001. The Committee’s principal responsibilities include reviewing perinatal deaths occurring in the Territory, contributing to the national perinatal mortality dataset held by the Australian Institute of Health and Welfare, providing neonatal mortality data to the ACT Children and Young People Death Review Committee, and classifying perinatal deaths according to The Perinatal Society of Australia and New Zealand (PSANZ) perinatal mortality classification system. This five-year report on perinatal mortality in the ACT is one of the key outputs from the Committee. The Committee also seeks to provide advice through the ACT Health Quality and Safety Committee on matters that relate to maternal and perinatal mortality in the ACT. While not all perinatal deaths are preventable, the Committee seeks to gain a better understanding of how to prevent those deaths that are, through research and the provision of reports such as this.

The Committee reports the epidemiology of perinatal deaths in the ACT over five-year periods. Due to the small number of perinatal deaths that occur in the Territory each year, analyses conducted over a five-year period brings a degree of stability to the data. Even though this allows for generalisations to be made to the population, results must be interpreted with caution. As such, limitations are noted and discussed across the report.

ACT Health does not generally publish tables that contain less than five cases within a given category. However, due to the small number of perinatal deaths that occur each year in the ACT and the importance and value placed on this information, the data custodian approved publication of tables including numbers less than five.

Since 2001, the Committee has identified areas for improvements, including a need for data collection for congenital anomalies as a cause of perinatal death; offering families experiencing perinatal loss an autopsy, and where an autopsy is not performed, making alternative investigations available; research into investigations that should be performed when an antepartum death has occurred; participation in a national training program focused on increasing the identification of pregnancies complicated by fetal growth restriction; and administrative support to improve data quality. All maternal and perinatal reports published by the Committee are available online at ACT Health Epidemiology Publications.

Since the third report, there have been significant changes in maternity and perinatal health services in the ACT:

In 2018, the Committee supported a change to the ACT Stillbirth legislation that provides parents greater autonomy about whether they apply for a birth certificate for their stillborn baby whose heartbeat ceased in the womb before reaching 20 weeks from conception, but was born at or after 20 weeks. Under the new legislation, grieving families can choose whether or not to register their stillborn babies born under these circumstances.
In March 2018, the Senate established the Select Committee on Stillbirth Research and Education to make inquiries into and report on the future of stillbirth research and education in Australia.⁷ Over 269 submissions were received and public hearings were held in six cities across Australia. In December 2018, the Senate Committee tabled its final report, comprising of 16 recommendations.⁷
In February 2019, The Preterm Birth Prevention Initiative in the ACT was launched by Canberra Health Services as part of the Whole Nine Months Program, a successful pioneering model from Western Australia (WA). Implementation of this initiative aimed to raise awareness of preterm birth and risk factors in the community, thereby promoting healthy lifestyles both in pregnancy and outside of pregnancy and improving health outcomes for babies. ACT is the first jurisdiction outside of WA to launch a jurisdiction-wide service, extending into southern NSW and Murrumbidgee local health districts. The initiative was evaluated 16 months after implementation and results found that the Preterm Birth Prevention Initiative safely lowered the rates of preterm births in the ACT by 10%.
In September 2019, the Canberra Maternity Options Service (CMOS), a single-entry-point service that helps parents navigate the public maternity system, was launched to streamline access to public maternity services in the ACT.
ACT Health made homebirth a permanent maternity option in June 2020 following the Evaluation of the Publicly-Funded Homebirth Trial in the Australian Capital Territory. The evaluation found that the homebirth trial was a success and, recommended the establishment of homebirth as an ongoing model of care at CHS, as well as identifying opportunities to expand the model of care for more women and pregnant people across the ACT.⁸
In August 2020, the ACT Government committed to implementing a range of recommendations in the ACT Government Response to the Inquiry into Maternity Services in the ACT (the Inquiry),⁹ an inquiry into the operation of maternity services across the ACT with a strong focus on public maternity services, including models of care, information provision, birthing preferences, and workforce challenges. Following a comprehensive review of maternity services in the ACT, the Inquiry highlighted the importance of perinatal loss and identified opportunities for the ACT to improve services and supports for those experiencing such loss.¹⁰
In December 2020, as part of its response to the Senate Select Committee on Stillbirth Research and Education Report, the Australian Government released the National Stillbirth Action and Implementation Plan, which primarily aims to reduce preventable stillbirth rates (over 28 weeks gestation) in Australia by 20% by 2025.¹¹
In December 2020, the Safer Baby Bundle (SBB) was launched in the ACT providing information for women and pregnant people on how to reduce their risk of stillbirth as well as a package of training resources and interventions for health professionals designed to reduce preventable stillbirths.¹² The ACT government is committed to reducing stillbirth (also known as fetal death) after 28 weeks gestation by 20% by 2025 in line with the Safer Baby Bundle National Initiative.
In June 2022, the ACT government launched the Maternity in Focus: The ACT Public Maternity System Plan 2022–2032, a consolidated action and implementation plan of recommendations derived from local projects, strategies and implementation plans and as well as national maternity strategies, to provide a comprehensive and holistic approach to maternity system reform. Over the next ten years, the plan will aim to improve the public maternity system and services through individualised care, equity, and evidence, to make the ACT public maternity services the best in Australia.⁵

Maternity services in the ACT and the Australian Capital Region

Each year, over 6,000 women, pregnant people and their families access the ACT maternity system for their pregnancy and birth. Women and pregnant people have the option to access public or private maternity care.¹⁰ At the time of writing this report, there were four hospitals in the ACT that provided maternity services to ACT residents and residents of the surrounding regions of NSW.

This report primarily focuses on perinatal deaths for babies of ACT residents where the birth occurred in the ACT. It does not include ACT residents who gave birth outside of the ACT. Unless otherwise stated, residents from other jurisdictions who gave birth in the ACT have been excluded to allow for a population-based analysis. While this report’s focus is on perinatal deaths among ACT residents, all perinatal deaths that occur in the ACT are routinely monitored and reviewed. Three of the hospitals in the ACT also perform their own review of perinatal deaths. All hospitals complete a confidential perinatal mortality form for each perinatal death that occurs and this is forwarded to the Committee where cases are coded according to the PSANZ perinatal mortality classification system developed for use as part of the process of clinical audit of perinatal deaths. The PSANZ classifications are assigned by the Committee following consideration of all available clinical information for each perinatal death. An annual presentation of perinatal deaths is made to the ACT Health Quality and Safety Committee, with recommendations implemented as required.

Aims of this report

This report aims to shine a light on perinatal mortality and presents a focused analysis of the epidemiology of perinatal deaths for babies born to women who were both resident in the ACT and gave birth in the Territory for the 2016–2020 reporting period. Definitions used by the Committee (and in this report) are provided in the Methods (see Appendix B and Glossary section of this Report.

Since the last report, the PSANZ classification system was revised (in 2017) to improve placental pathology and unexplained stillbirth classification, with the new classification taking effect from 1st January 2019. The data prior to 2019 were classified according to PSANZ version 2.2, while data from 2019 onwards were classified according to PSANZ version 3.1. As the versions are not comparable, for this Report all perinatal deaths have been recoded retrospectively for 2016 to 2018 using PSANZ version 3.1 and the new coding system implemented from 2019 onwards, to allow for comparative data for the most recent five-year reporting period.

The purpose of this work is to provide insight into the trends in perinatal mortality in the ACT and to better inform clinicians and public health professionals in their efforts to improve perinatal care in the Territory.

Perinatal deaths in the ACT

All perinatal deaths in 2016–2020

This section of the report provides an overview of all perinatal deaths in the ACT that occurred in the reporting period 1 January 2016 to 31 December 2020. It provides information on perinatal deaths to ACT resident mothers and non-ACT resident mothers who gave birth in the ACT. Subsequent sections of this report will focus on ACT residents only.

In total, 31,403 births were notified to the ACT Maternal and Perinatal Data Collection. These included births of at least 400 g birthweight or 20 weeks gestation. Of these, 249 were fetal deaths and 31,154 were live births. Over the five-year period, 2016–2020, a total of 79 live born infants died within 28 days of birth (neonatal deaths).

Table 1 shows the number and percentage of fetal, neonatal and perinatal deaths between 2001 and 2020 by five-year time periods and usual place of residence. During the five-year period, 2016–2020, a total of 328 perinatal deaths were reported in the Territory. The overall number of perinatal deaths in the ACT has remained relatively stable over the last four reporting periods.

Over the most recent five-year reporting period, approximately one quarter (26.2%) of perinatal deaths were reported for non-ACT resident mothers who gave birth in the ACT. Many of these were babies of women who were referred to the Centenary Hospital for Women and Children, at the Canberra Hospital, for tertiary level maternal and neonatal care for high-risk and multi-fetal pregnancies and births. In these instances, a transfer from smaller maternity units in rural or regional New South Wales is preferred to manage pregnancies at a higher risk of complications.

Table 1: Fetal, neonatal and perinatal deaths by time period (5 years) and usual place of residence, 2001–2020
Time period	Fetal deaths		Neonatal deaths		Perinatal deaths
Time period	No.	%	No.	%	No.	%
2001⁠–⁠2005
ACT Residents	153.0	75.0	64.0	54.7	217.0	67.6
Non-ACT Residents	51.0	25.0	53.0	45.3	104.0	32.4
Total	204.0	100.0	117.0	100.0	321.0	100.0
2006⁠–⁠2010
ACT Residents	187.0	71.9	62.0	52.5	249.0	65.9
Non-ACT Residents	73.0	28.1	56.0	47.5	129.0	34.1
Total	260.0	100.0	118.0	100.0	378.0	100.0
2011⁠–⁠2015
ACT Residents	193.0	75.4	59.0	65.6	252.0	72.8
Non-ACT Residents	63.0	24.6	31.0	34.4	94.0	27.2
Total	256.0	100.0	90.0	100.0	346.0	100.0
2016⁠–⁠2020
ACT Residents	183.0	73.5	59.0	74.7	242.0	73.8
Non-ACT Residents	66.0	26.5	20.0	25.3	86.0	26.2
Total	249.0	100.0	79.0	100.0	328.0	100.0
Source: ACT Maternal and Perinatal Data Collection.

Perinatal mortality rates in 2016–2020

Table 2 shows the annual number and rate (per 1,000 births) of fetal, neonatal and perinatal deaths in the ACT between 2016 and 2020. The perinatal mortality rate for the ACT over the five-year period, 2016–2020, was 9.0 deaths per 1,000 total births, which comprised of a fetal mortality rate of 6.8 deaths per 1,000 total births and a neonatal mortality rate of 2.2 deaths per 1,000 live births. This is a similar five-year average to the previous report (2011–2015) of 9.5 per 1,000 births, 7.3 per 1,000 total births, and 2.2 per 1,000 live births, respectively.

In 2016–2020, the annual perinatal mortality rate for the ACT ranged between 10.4 deaths per 1,000 total births in 2017 and 7.5 deaths in 2020, the lowest reported annual perinatal mortality rate since 2009. Whilst it was a decrease, it was not a statistically significant change.

Fetal mortality rates decreased from 8.5 deaths per 1,000 total births in 2017 to 6.3 in 2020 and the annual rate for neonatal mortality decreased across the reporting period, from 3.4 deaths per 1,000 live births in 2016 to 1.2 in 2020.

In order to comply with ACT legislation, Table 2 includes babies born with a birthweight of less than 400 grams who were born at 20 weeks gestation or more. Not all states and territories report births where there is a birth weight of less than 400 grams independent of gestation at birth. When these cases are excluded, the perinatal mortality rate in the ACT is 5.8 deaths per 1,000 births (see Figure 1 and Table 3).

Table 2: Fetal, neonatal and perinatal deaths (number and rate per 1,000 births), ACT residents, 2016–2020
Year	^aTotal births^a	Live births	Fetal deaths			Neonatal deaths			Perinatal deaths
Year	^aTotal births^a	Live births	No.	Rate^b	95% CI^c	No.	Rate^d	95% CI^c	No.	Rate^b	95% CI^c
2016	5,685	5,650	35	6.2	(4.1⁠–⁠8.2)	19	3.4	(1.9⁠–⁠4.9)	54	9.5	(7.0⁠–⁠12.0)
2017	5,386	5,340	46	8.5	(6.1⁠–⁠11.0)	10	1.9	(0.7⁠–⁠3.0)	56	10.4	(7.7⁠–⁠13.1)
2018	5,149	5,112	37	7.2	(4.9⁠–⁠9.5)	14	2.7	(1.3⁠–⁠4.2)	51	9.9	(7.2⁠–⁠12.6)
2019	5,399	5,367	32	5.9	(3.9⁠–⁠8.0)	10	1.9	(0.7⁠–⁠3.0)	42	7.8	(5.4⁠–⁠10.1)
2020	5,204	5,171	33	6.3	(4.2⁠–⁠8.5)	6	1.2	(0.2⁠–⁠2.1)	39	7.5	(5.1⁠–⁠9.8)
2016⁠–⁠2020	26,823	26,640	183	6.8	(5.8⁠–⁠7.8)	59	2.2	(1.6⁠–⁠2.8)	242	9.0	(7.9⁠–⁠10.2)
Source: ACT Maternal and Perinatal Data Collection.
^a Total births includes live births and fetal deaths.
^b Rate per 1,000 births.
^c CI = confidence interval.
^d Rate per 1,000 live births.

Perinatal mortality rates adjusted for late terminations and birthweight less than 400 grams

This section of the report outlines trends in perinatal mortality in the ACT, including fetal and neonatal deaths, during the reporting period 2016–2020. Rates are presented as three-year rolling averages to more clearly show the underlying trend by reducing the impact of fluctuations in rates due to the small number of perinatal deaths that occur each year in the Territory.

Figure 1 and Table 3 show a comparison of fetal, neonatal, and perinatal mortality rates in the ACT over the five-year reporting period adjusted for late terminations and birthweight less than 400 grams. Late terminations of pregnancy (termination at 20 weeks gestation or more) for severe and lethal congenital anomalies and other medical conditions are included in the ACT Perinatal Data Collection and thus contribute to the Territory’s perinatal mortality rate. During the period 2016–2020, there were 87 late terminations in the ACT. The Canberra Hospital is currently the only hospital in the Territory that performs late terminations for congenital anomalies under the framework of a Termination Review Committee.

Babies born with a birthweight of less than 400 grams have a high risk of death. During the five-year reporting period, there were 85 babies born with a birthweight of less than 400 grams in the ACT. When adjusted for late terminations and birthweight less than 400 grams, the perinatal mortality rate for ACT residents over 2016–2020 was 4.2 deaths per 1,000 total births.

Figure 1: Trend of perinatal mortality (rate per 1,000 births) in the ACT, ACT residents, 2016–2020

Table 3: Perinatal mortality rates (per 1,000 births) in the ACT, excluding late terminations and birthweight less than 400 grams, ACT residents, 2016–2020
Year	All deaths	Excluding late terminations of pregnancy	Excluding birthweight less than 400 grams	Excluding late terminations and birthweight less than 400 grams
Fetal deaths^a
2016	6.8	4.5	4.2	3.0
2017	7.3	4.4	4.3	2.8
2018	7.2	4.3	4.3	2.8
2019	6.5	3.7	4.1	2.5
2020	6.1	3.7	4.2	2.7
2016⁠–⁠2020	6.8	4.1	4.3	2.8
Neonatal deaths^b
2016	2.6	2.2	2.2	1.9
2017	2.7	2.0	1.9	1.7
2018	2.1	1.5	1.4	1.2
2019	1.9	1.2	1.2	1.0
2020	1.5	1.1	1.0	1.0
2016⁠–⁠2020	2.2	1.7	1.6	1.4
Perinatal deaths^a
2016	9.4	6.7	6.4	4.9
2017	9.9	6.4	6.2	4.5
2018	9.4	5.7	5.7	4.0
2019	8.4	4.9	5.3	3.6
2020	7.6	4.8	5.3	3.8
2016⁠–⁠2020	9.0	5.8	5.8	4.2
Source: ACT Maternal and Perinatal Data Collection and ACT Perinatal Death Data Collection.
Note: ACT rates are based on three-year rolling averages.
^a Rate per 1,000 births.
^b Rate per 1,000 live births.

Perinatal deaths in the ACT compared to Australia

This section of the report compares perinatal deaths in the ACT to Australia. Care must be taken when comparing perinatal mortality figures across the states and territories. Perinatal mortality rates in the ACT fluctuate each year due to the small number of deaths and should be interpreted with caution. In addition, slight variations in the reporting practices and definitions implemented by each of the Australian state and territories must be considered when comparing data by jurisdiction or against national figures. For example, a number of jurisdictions do not report perinatal deaths less than 400 grams. Although rates in this report are based on three-year rolling averages to enable a more valid comparison with national figures, caution must be exercised when interpreting results.

Comparison of ACT perinatal mortality rates with national data

Figure 2 and Table 4 show the annual fetal, neonatal and perinatal mortality rates for the ACT and Australia across the five-year reporting period. There was no significant difference in the five-year combined rate for the ACT and Australia. Between 2016 and 2019, there was no significant difference between the annual fetal death rates and neonatal mortality rates for the ACT and Australia. In 2020, the annual mortality rate for the ACT for perinatal mortality was significantly lower than the rate reported for Australia. Whilst this could reflect improvements in maternal and perinatal health, this change occurred in the context of the COVID-19 pandemic and could be as a result of external factors, or random variation, as statistical fluctuations occur with small numbers. Therefore, the annual figure should be interpreted with caution. The Committee will continue monitoring trends over time.

Figure 2: Trend of perinatal mortality rates (per 1,000 births), ACT residents and Australia, 2016–2020

Table 4: Fetal, neonatal and perinatal mortality rates (per 1,000 births) for the ACT and Australia, 2016–2020
Year	ACT		Australia
Year	Rate	95% CI^a	Rate	95% CI^a
Fetal deaths^b
2016	6.8	(5.6⁠–⁠8.1)	6.7	(6.4⁠–⁠7.0)
2017	7.3	(6.0⁠–⁠8.6)	7.1	(6.8⁠–⁠7.4)
2018	7.2	(5.9⁠–⁠8.5)	7.0	(6.7⁠–⁠7.3)
2019	6.5	(5.2⁠–⁠7.7)	7.2	(6.9⁠–⁠7.5)
2020	6.1	(4.6⁠–⁠7.6)	7.7	(7.4⁠–⁠8.0)
2016⁠–⁠2020	6.8	(5.8⁠–⁠7.8)	7.1	(7.0⁠–⁠7.3)
Neonatal deaths^c
2016	2.6	(1.8⁠–⁠3.4)	2.4	(2.2⁠–⁠2.6)
2017	2.7	(1.9⁠–⁠3.5)	2.6	(2.5⁠–⁠2.8)
2018	2.1	(1.4⁠–⁠2.9)	2.4	(2.2⁠–⁠2.6)
2019	1.9	(1.2⁠–⁠2.6)	2.4	(2.2⁠–⁠2.5)
2020	1.5	(0.8⁠–⁠2.3)	2.5	(2.3⁠–⁠2.7)
2016⁠–⁠2020	2.2	(1.6⁠–⁠2.8)	2.5	(2.4⁠–⁠2.5)
Perinatal deaths^b
2016	9.4	(7.9⁠–⁠10.9)	9.1	(8.8⁠–⁠9.4)
2017	9.9	(8.4⁠–⁠11.5)	9.7	(9.4⁠–⁠10.1)
2018	9.4	(7.8⁠–⁠10.9)	9.4	(9.0⁠–⁠9.7)
2019	8.4	(7.0⁠–⁠9.8)	9.6	(9.2⁠–⁠9.9)
2020	7.6	(6.0⁠–⁠9.3)	10.1	(9.8⁠–⁠10.5)
2016⁠–⁠2020	9.0	(7.9⁠–⁠10.2)	9.6	(9.4⁠–⁠9.7)
Source: ACT Maternal and Perinatal Data Collection and Australian Institute of Health and Welfare (AIHW) National Perinatal Data Collection.
Note: ACT rates are based on three-year rolling averages.
^a CI = confidence interval.
^b Rate per 1,000 births.
^c Rate per 1,000 live births.

Comparison of causes of perinatal death in the ACT with national data

The most common antecedent causes of perinatal deaths in 2016–2020 were similar in the ACT compared to Australia in 2020. The main antecedent causes of perinatal death for ACT residents were:

Congenital anomaly (31.4%),
Placental dysfunction or causative placental pathology (12.4%), and
Unexplained antepartum fetal death (10.7%).

Nationally, the main antecedent causes of perinatal death were⁶:

Congenital anomaly (32.5%),
Spontaneous preterm labour or rupture of membranes (<37 weeks gestation) (13.2%), and
Maternal conditions (11.0%).

Tables 5, 6 and 7 show the fetal, neonatal and perinatal mortality rates (per 1,000 births) respectively, across the reporting period by cause of death using the PSANZ-PDC classifications for the ACT and Australia. The ACT fetal and perinatal mortality rates for maternal conditions and spontaneous preterm labour or rupture of membranes (<37 weeks gestation) were significantly lower than Australia (Table 5 and 7, respectively).

Table 5: Fetal mortality rate (per 1,000 births) by cause of death (PSANZ-PDC), ACT residents, 2016–2020 and Australia, 2020
PSANZ-PDC^a	ACT		Australia
PSANZ-PDC^a	Rate^b	95% CI^c	Rate^b	95% CI^c
Congenital anomaly	2.2	(1.7⁠–⁠2.8)	2.4	(2.2⁠–⁠2.6)
Perinatal infection	0.7	(0.4⁠–⁠1.0)	0.4	(0.3⁠–⁠0.5)
Hypertension	n.p	n.p	0.2	(0.1⁠–⁠0.2)
Antepartum haemorrhage	0.5	(0.2⁠–⁠0.8)	0.4	(0.4⁠–⁠0.5)
Maternal conditions	0.2	(0.0⁠–⁠0.4)	1.0	(0.9⁠–⁠1.2)
Complications of multiple pregnancy	0.3	(0.1⁠–⁠0.5)	0.3	(0.2⁠–⁠0.4)
Specific perinatal conditions	0.3	(0.1⁠–⁠0.6)	0.4	(0.3⁠–⁠0.4)
Hypoxic peripartum death	n.p	n.p	0.1	(0.1⁠–⁠0.1)
Placental dysfunction or causative placental pathology	1.0	(0.7⁠–⁠1.4)	0.8	(0.7⁠–⁠0.9)
Spontaneous preterm labour or rupture of membranes (<37 weeks gestation)	0.2	(0.0⁠–⁠0.3)	0.6	(0.5⁠–⁠0.7)
Unexplained antepartum fetal death	1.0	(0.6⁠–⁠1.3)	1.0	(0.9⁠–⁠1.1)
Neonatal death without obstetric antecedent	n.p	n.p	n.p	n.p
Not stated	n.p	n.p	0.1	(0.1⁠–⁠0.1)
Total	6.8	(5.8⁠–⁠7.8)	7.7	(7.4⁠–⁠8.0)
Source: ACT Maternal and Perinatal Data Collection, ACT Perinatal Death Data Collection and Australian Institute of Health and Welfare (AIHW) National Perinatal Data Collection.
n.p. = not published. Not calculated due to small numbers.
^a Perinatal Society of Australia and New Zealand — Perinatal Death Classification.
^b Rate per 1,000 births.
^c CI = confidence interval.

Table 6: Neonatal mortality rate (per 1,000 births) by cause of death (PSANZ-PDC), ACT residents, 2016–2020 and Australia, 2020
PSANZ-PDC^a	ACT		Australia
PSANZ-PDC^a	Rate^b	95% CI^c	Rate^b	95% CI^c
Congenital anomaly	0.6	(0.3⁠–⁠0.9)	0.9	(0.8⁠–⁠1.0)
Perinatal infection	0.2	(0.0⁠–⁠0.4)	0.2	(0.1⁠–⁠0.2)
Hypertension	n.p	n.p	0.1	(0.0⁠–⁠0.1)
Antepartum haemorrhage	0.4	(0.1⁠–⁠0.6)	0.1	(0.1⁠–⁠0.2)
Maternal conditions	n.p	n.p	0.1	(0.0⁠–⁠0.1)
Complications of multiple pregnancy	n.p	n.p	0.1	(0.0⁠–⁠0.1)
Specific perinatal conditions	n.p	n.p	0.1	(0.0⁠–⁠0.1)
Hypoxic peripartum death	0.2	(0.0⁠–⁠0.4)	0.1	(0.1⁠–⁠0.2)
Placental dysfunction or causative placental pathology	n.p	n.p	0.0	(0.0⁠–⁠0.1)
Spontaneous preterm labour or rupture of membranes (<37 weeks gestation)	0.5	(0.3⁠–⁠0.8)	0.8	(0.7⁠–⁠0.9)
Unexplained antepartum fetal death	n.p	n.p	n.p	n.p
Neonatal death without obstetric antecedent	n.p	n.p	0.1	(0.0⁠–⁠0.1)
Not stated	n.p	n.p	0.0	(0.0⁠–⁠0.0)
Total	2.2	(1.6⁠–⁠2.8)	2.5	(2.3⁠–⁠2.7)
Source: ACT Maternal and Perinatal Data Collection, ACT Perinatal Death Data Collection and Australian Institute of Health and Welfare (AIHW) National Perinatal Data Collection.
n.p. = not published. Not calculated due to small numbers.
^a Perinatal Society of Australia and New Zealand — Perinatal Death Classification.
^b Rate per 1,000 live births.
^c CI = confidence interval.

Table 7: Perinatal mortality rate (per 1,000 births) by cause of death (PSANZ-PDC), ACT residents, 2016–2020 and Australia, 2020
PSANZ-PDC^a	ACT		Australia
PSANZ-PDC^a	Rate^b	95% CI^c	Rate^b	95% CI^c
Congenital anomaly	2.8	(2.2⁠–⁠3.5)	3.3	(3.1⁠–⁠3.5)
Perinatal infection	0.9	(0.5⁠–⁠1.3)	0.5	(0.5⁠–⁠0.6)
Hypertension	0.2	(0.0⁠–⁠0.3)	0.2	(0.2⁠–⁠0.3)
Antepartum haemorrhage	0.9	(0.5⁠–⁠1.3)	0.6	(0.5⁠–⁠0.7)
Maternal conditions	0.2	(0.0⁠–⁠0.4)	1.1	(1.0⁠–⁠1.2)
Complications of multiple pregnancy	0.3	(0.1⁠–⁠0.6)	0.4	(0.3⁠–⁠0.4)
Specific perinatal conditions	0.4	(0.2⁠–⁠0.7)	0.4	(0.3⁠–⁠0.5)
Hypoxic peripartum death	0.3	(0.1⁠–⁠0.6)	0.2	(0.2⁠–⁠0.3)
Placental dysfunction or causative placental pathology	1.1	(0.7⁠–⁠1.5)	0.8	(0.7⁠–⁠0.9)
Spontaneous preterm labour or rupture of membranes (<37 weeks gestation)	0.7	(0.4⁠–⁠1.0)	1.3	(1.2⁠–⁠1.5)
Unexplained antepartum fetal death	1.0	(0.6⁠–⁠1.3)	1.0	(0.9⁠–⁠1.1)
Neonatal death without obstetric antecedent	n.p	n.p	0.1	(0.0⁠–⁠0.1)
Not stated	n.p	n.p	0.1	(0.1⁠–⁠0.1)
Total	9.0	(7.9⁠–⁠10.2)	10.1	(9.8⁠–⁠10.5)
Source: ACT Maternal and Perinatal Data Collection, ACT Perinatal Death Data Collection and Australian Institute of Health and Welfare (AIHW) National Perinatal Data Collection.
n.p. = not published. Not calculated due to small numbers.
^a Perinatal Society of Australia and New Zealand — Perinatal Death Classification.
^b Rate per 1,000 births.
^c CI = confidence interval.

Perinatal deaths by maternal characteristics

This section of the report focuses on perinatal deaths (per 1,000 births) by maternal characteristics, including maternal age, women who used assisted reproduction technology, smoking status during pregnancy, maternal body mass index (BMI) and Aboriginal and Torres Strait Islander status of the mother. Whilst it has been found that these characteristics can be associated with pregnancies that result in perinatal death, it is not implied that they are the cause of perinatal mortality.

Maternal age

Table 8 shows the rate of perinatal, fetal and neonatal mortality by maternal age for the five-year period, 2016–2020. Perinatal mortality rates were highest among babies born to women aged under 20 years (21.9 perinatal deaths per 1,000 births) and women aged 40 years or over (12.5 perinatal deaths per 1,000 births). Perinatal mortality was lowest for babies born to women aged 20–39 years. While differences between maternal age groups were not significantly different in the ACT, they align with national reporting, which has shown that perinatal mortality is highly related to maternal age; with mothers aged less than 20 years and those aged 45 years and older experiencing significantly higher rates than other mothers.⁶

There were only five perinatal deaths among babies born to mothers aged 45 years or older in the ACT in 2016–2020. The average age of mothers who had a perinatal death increased from 30.8 years in the 2011–2015 reporting period to 31.9 years in 2016–2020.

Table 8: Fetal, neonatal and perinatal deaths (number and rate per 1,000 births) by maternal age (years), ACT residents, 2016–2020
Maternal age (years)	Total births^a	Live births	Fetal deaths			Neonatal deaths			Perinatal deaths
Maternal age (years)	Total births^a	Live births	No.	Rate^b	95% CI^c	No.	Rate^d	95% CI^c	No.	Rate^b	95% CI^c
Less than 20	274	269	5	18.2	(2.3⁠–⁠34.2)	1	n.p	n.p	6	21.9	(4.4⁠–⁠39.4)
20 to 29	8,300	8,254	46	5.5	(3.9⁠–⁠7.1)	18	2.2	(1.2⁠–⁠3.2)	64	7.7	(5.8⁠–⁠9.6)
30 to 39	16,964	16,846	118	7.0	(5.7⁠–⁠8.2)	38	2.3	(1.5⁠–⁠3.0)	156	9.2	(7.8⁠–⁠10.6)
40 or more	1,285	1,271	14	10.9	(5.2⁠–⁠16.6)	2	n.p	n.p	16	12.5	(6.4⁠–⁠18.6)
Total	26,823	26,640	183	6.8	(5.8⁠–⁠7.8)	59	2.2	(1.6⁠–⁠2.8)	242	9.0	(7.9⁠–⁠10.2)
Source: ACT Maternal and Perinatal Data Collection.
n.p. = not published. Not calculated due to small numbers.
^a Total births includes live births and fetal deaths.
^b Rate per 1,000 births.
^c CI = confidence interval.
^d Rate per 1,000 live births.

Assisted Reproductive Technology

In 2016–2020, 14.5% of perinatal deaths were known to have been conceived with Assisted Reproductive Technology (ART), compared to 10.0% in the 2011–2015 reporting period. We do not have data on rates of pregnancy conceived using ART to see if they have also increased over this time frame.

Smoking status during pregnancy

Table 9 shows the fetal, neonatal and perinatal mortality rates (per 1,000 births) by maternal smoking status for the five-year reporting period in the ACT. Perinatal mortality was more common among babies born to women who smoked during pregnancy than among babies born to women who didn’t smoke during pregnancy (16.0 deaths per 1,000 births and 8.6, respectively). While this difference is not significant in the ACT, it is consistent with national reporting, which found that in 2020 the perinatal mortality was higher among babies born to women who smoked throughout pregnancy (17.2 deaths per 1,000 births).¹²

In the five-year period, 2016–2020, less than 10% (8.7%) of women who experienced a perinatal death stated that they had smoked cigarettes while pregnant, a rate that has been gradually decreasing since the 2001–2005 reporting period (15.2%).

Table 9: Fetal, neonatal and perinatal deaths (number and rate per 1,000 births) by maternal smoking status, ACT Residents, 2016–2020
Smoking status during pregnancy	Total births^a	Live births	Fetal deaths			Neonatal deaths			Perinatal deaths
Smoking status during pregnancy	Total births^a	Live births	No.	Rate^b	95% CI^c	No.	Rate^d	95% CI^c	No.	Rate^b	95% CI^c
Smoker	1,314	1,298	16	12.2	(6.2⁠–⁠18.1)	5	3.9	(0.5⁠–⁠7.2)	21	16.0	(9.1⁠–⁠22.8)
Non-smoker	25,486	25,321	165	6.5	(5.5⁠–⁠7.5)	54	2.1	(1.6⁠–⁠2.7)	219	8.6	(7.5⁠–⁠9.7)
Not stated	23	21	2	n.p	n.p	0	n.p	n.p	2	n.p	n.p
Total	26,823	26,640	183	6.8	(5.8⁠–⁠7.8)	59	2.2	(1.6⁠–⁠2.8)	242	9.0	(7.9⁠–⁠10.2)
Source: ACT Maternal and Perinatal Data Collection.
n.p. = not published. Not calculated due to small numbers.
^a Total births includes live births and fetal deaths.
^b Rate per 1,000 births.
^c CI = confidence interval.
^d Rate per 1,000 live births.

Body mass index (BMI) of mother

Table 10 shows the fetal, neonatal and perinatal mortality rates (per 1,000 births) by maternal body mass index (BMI) for the 2016–2020 reporting period in the ACT. Maternal BMI is a new indicator that has been introduced to this Report. Pregnant women with obesity (BMI of 30 or more) and babies born to women with obesity are at increased risk of complications and mortality, including congenital abnormality, pre-term birth, fetal death and neonatal death.¹³ In the five-year period, babies born to women with a BMI of 30 or more had slightly higher but not significantly different perinatal mortality rates (11.3 deaths per 1,000 births) than those born to women with a BMI below 30 (8.7 deaths per 1,000 births).

Table 10: Fetal, neonatal and perinatal deaths (number and rate per 1,000 births) by maternal body mass index (BMI) category, ACT Residents, 2016–2020
Maternal BMI category	Total births^a	Live births	Fetal deaths			Neonatal deaths			Perinatal deaths
Maternal BMI category	Total births^a	Live births	No.	Rate^b	95% CI^c	No.	^dRate^d	95% CI^c	No.	^b	95% CI^c
Underweight	822	817	5	6.1	(0.8⁠–⁠11.4)	0	n.p	n.p	5	6.1	(0.8⁠–⁠11.4)
Healthy weight	12,731	12,655	76	6.0	(4.6⁠–⁠7.3)	29	2.3	(1.5⁠–⁠3.1)	105	8.2	(6.7⁠–⁠9.8)
Overweight	6,477	6,425	52	8.0	(5.8⁠–⁠10.2)	12	1.9	(0.8⁠–⁠2.9)	64	9.9	(7.5⁠–⁠12.3)
Obese	4,690	4,650	40	8.5	(5.9⁠–⁠11.2)	13	2.8	(1.3⁠–⁠4.3)	53	11.3	(8.3⁠–⁠14.3)
Not stated	2,103	2,093	10	4.8	(1.8⁠–⁠7.7)	5	2.4	(0.3⁠–⁠4.5)	15	7.1	(3.5⁠–⁠10.7)
Total	26,823	26,640	183	6.8	(5.8⁠–⁠7.8)	59	2.2	(1.6⁠–⁠2.8)	242	9.0	(7.9⁠–⁠10.2)
Source: ACT Maternal and Perinatal Data Collection.
n.p. = not published. Not calculated due to small numbers.
^a Total births includes live births and fetal deaths.
^b Rate per 1,000 births.
^c CI = confidence interval.
^d Rate per 1,000 live births.

Aboriginal and Torres Strait Islander mothers

For the 2016–2020 reporting period, babies born to Aboriginal and Torres Strait Islander mothers accounted for 2.1% of all births. There were three perinatal deaths for babies born to Aboriginal and Torres Strait Islander mothers residing in the ACT and four deaths among Aboriginal and Torres Strait Islander women who resided outside of the ACT and gave birth in the Territory. In comparison, in the previous reporting period, babies born to Aboriginal and Torres Strait Islander mothers accounted for 1.8% of all births and there were 14 perinatal deaths for babies born to Aboriginal and Torres Strait Islander mothers that were residents of the ACT and eight deaths among Aboriginal and Torres Strait Islander women who resided outside of the ACT and gave birth in the ACT.

Perinatal deaths by baby characteristics

This section of the report focuses on perinatal deaths (per 1,000 births) by baby characteristics, including gestational age and birthweight, place and type of perinatal death, multiple pregnancies, and Aboriginal and Torres Strait Islander status of the baby.

Gestational age and birthweight

Birthweight and gestational age are two of the most important factors that determine a baby’s perinatal health. Infants with an extremely low birthweight and an early gestational age have an increased risk of perinatal death. In the 2016–2020 reporting period, the majority (92.2%; 24,720/26,823) of babies born to ACT residents were born from 37 weeks gestation. The largest proportion of perinatal deaths (42.1%; 102/242) occurred in babies born at less than 23 weeks of gestation. Over 60% (153/242) of perinatal deaths occurred in babies born at less than 28 weeks of gestation.

Gestational age

In the five-year reporting period, preterm births (those that are delivered at less than 37 weeks gestation) accounted for 7.8% of all births and 82.6% of perinatal deaths. This is similar to the previous reporting period (2011–2015) of 7.8% and 82.9%, respectively. Babies delivered at less than 28 weeks gestation accounted for 0.8% of all births and 63.2% of all perinatal deaths, which is also similar to the 2011–2015 reporting period (0.8% and 64.7%, respectively).

Birthweight

Perinatal mortality rates declined with increasing birthweight. The relationship between gestational age and birthweight is likely a factor. Over the 2016–2020 reporting period, low birthweight babies (those with a birthweight less than 2,500 grams) accounted for 6.7% of all births and 82.2% of all perinatal deaths in the ACT. Infants with a birthweight less than 1,000 grams (0.8% of all births) accounted for over two-thirds (68.6%) of perinatal deaths. The perinatal mortality rate for babies with a birthweight less than 1,000 grams was 754.5 deaths per 1,000 births compared with 1.6 deaths per 1,000 births for babies weighing 2,500 or more grams. The mortality rate for babies born with a birthweight of greater than 2,500 grams was 1.6 deaths per 1,000 births in 2016–2020, a rate that has remained unchanged since the previous reporting period.

Fetal deaths by birthweight and gestational age

Fetal deaths occurring after 28 weeks of gestation, or in the third trimester of pregnancy, are known as late gestation stillbirths. The risk of perinatal death at less than 28 weeks gestation was 728.6 deaths per 1,000 total births compared with 3.3 deaths per 1,000 births for babies born at more than 28 weeks gestation.

Table 11 shows the number and percentage of fetal deaths by birthweight and gestational age for the five-year reporting period in the ACT. A total of 183 fetal deaths (fetal death in-utero or intrapartum death) were reported in the ACT in 2016–2020. The majority of these deaths occurred where the fetus weighed less than 2,500 grams (83.1%) and/or was less than 37 weeks gestation (83.1%).

Table 11: Number and percentage of fetal deaths by birthweight (grams) and gestational age (weeks), ACT residents, 2016–2020
Group	No.	%
Birthweight (grams)
Less than 1,000	125	68.3
1,000⁠–⁠2,499	27	14.8
2,500 or more	30	16.4
Not stated	1	0.5
Total	183	100.0
Gestational age (weeks)
Less than 23	75	41.0
23⁠–⁠27	36	19.7
28⁠–⁠36	41	22.4
37 or more	31	16.9
Total	183	100.0
Source: ACT Maternal and Perinatal Data Collection.

Birthweight percentile

Birthweight percentiles express the weight of a baby in relation to their gestational age at birth and a typical cohort of other babies born at the same gestational age. Babies are defined as being small, large or appropriate for gestational age when their birthweight is below the 10th percentile, more than the 90th percentile, and between the 10th and 90th percentile for their gestational age and sex, respectively.⁶ Table 12 shows the rate of perinatal mortality by birthweight percentiles and gestational age for singleton babies (where only one baby was born). In 2016–2020, 10.6% (n = 2,833) of babies born in the ACT were small for gestational age (birthweight below the 10th percentile for their age and sex). The rate of perinatal mortality was highest for singleton babies who were born before 27 weeks gestation and whose birthweight was classified as being small for their gestational age. A gestational age of less than 23 weeks was considered pre-viable during the reporting period, which is reflected in the 100% mortality in this age group.

Perinatal mortality was most common in babies who were small for their gestational age (21.5 deaths per 1,000 births). Babies considered to be an appropriate birthweight for their gestational age had a perinatal mortality rate of 6.5 deaths per 1,000 births. The lowest rates of perinatal death occurred among babies who were large for their gestational age (i.e their birthweight was in the 91st to 100th percentile for their gestational age with a rate of 5.4 deaths per 1,000 births).

Table 12: Perinatal mortality rate (per 1,000 births) by birthweight percentile for gestational age (weeks) for singleton births, ACT residents, 2016–2020
Birthweight percentile	Less than 23 weeks	23⁠–⁠27 weeks	28⁠–⁠36 weeks	37 or more weeks	Total
<10th
Total births^a	27	22	166	2,431	2,646
Perinatal deaths	27	17	5	8	57
Rate^b	1000.0	772.7	30.1	3.3	21.5
95% CI ^c	(622.8⁠–⁠1377.2)	(405.4⁠–⁠1140.1)	(3.7⁠–⁠56.5)	(1.0⁠–⁠5.6)	(15.9⁠–⁠27.1)
10⁠–⁠100th
Total births^a	65	64	1,249	21,884	23,262
Perinatal deaths	65	27	28	28	148
Rate^b	1000.0	421.9	22.4	1.3	6.4
95% CI ^c	(756.9⁠–⁠1243.1)	(262.7⁠–⁠581.0)	(14.1⁠–⁠30.7)	(0.8⁠–⁠1.8)	(5.3⁠–⁠7.4)
Source: ACT Maternal and Perinatal Data Collection.
Note:
(a) Excludes babies less than 20 weeks gestation or greater than 41 weeks gestation and those with unknown birthweight and/or sex.
(b) Due to small numbers data were combined. 10⁠–⁠100th percentile includes: 1) weight (grams) appropriate for gestational age (10⁠–⁠90th percentile), and 2) large for gestational age (91st⁠–⁠100th).
^a Total births includes live births and fetal deaths.
^b The rate is the number of deaths per 1,000 births per specified gestational group, calculated using total births.
^c CI = confidence interval.

Plurality

Table 13 shows the fetal, neonatal and perinatal deaths (number and rate per 1,000 births) by plurality (the number of births resulting from a single pregnancy) over the five-year reporting period. In 2016–2020, 97.0% (n=26,010) of all births to ACT mothers who gave birth in the Territory were singleton births and 3.0% (n= 813) were multiple births (twins, triplets). Perinatal mortality from multiple births represented 9.9% of all perinatal deaths. Of these, the majority ( 20 deaths) involved twins. The perinatal mortality rate for singleton births was 8.4 deaths per 1,000 births, with 163 (74.8%) of these being fetal deaths.

It should be noted that, even when averaged over five years, mortality rates for multiple birth babies will fluctuate due to small numbers.

The percentage of extremely low birthweight perinatal deaths (less than 1,000 grams) was slightly higher for multiple birth babies (75.0%) than for singleton babies (67.9%).

Table 13: Fetal, neonatal and perinatal deaths (number and rate per 1,000 births) by plurality, ACT residents, 2016–2020
Plurality	Total births^a	Live births	Fetal deaths			Neonatal deaths			Perinatal deaths
Plurality	Total births^a	Live births	No.	Rate^b	95% CI^c	No.	Rate^d	95% CI^c	No.	Rate^b	95% CI^c
Singleton	26,010	25,847	163	6.3	(5.3⁠–⁠7.2)	55	2.1	(1.6⁠–⁠2.7)	218	8.4	(7.3⁠–⁠9.5)
Twins	792	776	16	20.2	(10.3⁠–⁠30.1)	4	n.p	n.p	20	25.3	(14.2⁠–⁠36.3)
Triplets	21	17	4	n.p	n.p	0	n.p	n.p	4	n.p	n.p
Multiple birth	813	793	20	24.6	(13.8⁠–⁠35.4)	4	n.p	n.p	24	29.5	(17.7⁠–⁠41.3)
Total	26,823	26,640	183	6.8	(5.8⁠–⁠7.8)	59	2.2	(1.6⁠–⁠2.8)	242	9.0	(7.9⁠–⁠10.2)
Source: ACT Maternal and Perinatal Data Collection.
n.p. = not published. Not calculated due to small numbers.
^a Total births includes live births and fetal deaths.
^b Rate per 1,000 births.
^c CI = confidence interval.
^d Rate per 1,000 live births.

Table 14 shows the number, percentage and rate of perinatal deaths by cause of death (PSANZ-PDC) and plurality over the five-year reporting period. Of the 24 perinatal deaths for multiple birth babies that occurred in 2026–2020, the primary cause was complications of multiple pregnancy (37.5%) followed by congenital anomaly (16.7%) and spontaneous preterm labour or rupture of membranes (<37 weeks gestation) (16.7%). Among singleton births the primary causes of perinatal death were congenital anomaly (33.0%) and placental dysfunction or causative placental pathology (13.3%).

Table 14: Number, percentage and rate of perinatal deaths by cause of death (PSANZ-PDC) and plurality, ACT residents, 2016–2020
PSANZ-PDC^a	Singleton			Multiple Birth
PSANZ-PDC^a	No.	%	Rate^b	No.	%^c	Rate^d
Congenital anomaly	72	33.0	2.8	4	16.7	n.p
Perinatal infection	22	10.1	0.8	2	8.3	n.p
Hypertension	5	2.3	0.2	0	0.0	n.p
Antepartum haemorrhage	24	11.0	0.9	0	0.0	n.p
Maternal conditions	5	2.3	0.2	1	4.2	n.p
Complications of multiple pregnancy	0	0.0	n.p	9	37.5	11.1
Specific perinatal conditions	11	5.0	0.4	0	0.0	n.p
Hypoxic peripartum death	9	4.1	0.3	0	0.0	n.p
Placental dysfunction or causative placental pathology	29	13.3	1.1	1	4.2	n.p
Spontaneous preterm labour or rupture of membranes (<37 weeks gestation)	15	6.9	0.6	4	16.7	n.p
Unexplained antepartum fetal death	23	10.6	0.9	3	12.5	n.p
Neonatal death without obstetric antecedent	1	0.5	n.p	0	0.0	n.p
Not stated	2	0.9	n.p	0	0.0	n.p
Total	218	100.0	8.4	24	100.0	29.5
Source: ACT Maternal and Perinatal Data Collection and ACT Perinatal Death Data Collection.
n.p. = not published. Not calculated due to small numbers.
^a Perinatal Society of Australia and New Zealand — Perinatal Death Classification.
^b Rate per 1,000 . SingletonT14 births.
^c Due to the rounding of percentages totals may not equal 100%.
^d Rate per 1,000 . MultipleBirthT14s.

Aboriginal and Torres Strait Islander status of the baby

In 2016–2020, Aboriginal and Torres Strait Islander babies accounted for 2.1% of all births. There were five perinatal deaths in Aboriginal and Torres Strait Islander babies in the ACT and six deaths among Aboriginal and Torres Strait Islander babies whose mothers resided outside of the ACT and gave birth in the Territory (Table 15).

Table 15: Number and percentage of perinatal deaths by usual place of residence and baby Aboriginal and Torres Strait Islander status, 2016–2020
Aboriginal and Torres Strait Islander status (baby)	ACT Residents		Non-ACT Residents		Total
Aboriginal and Torres Strait Islander status (baby)	No.	%	No.	%	No.	%
Aboriginal and/or Torres Strait Islander	5	2.1	6	7.0	11	3.4
Non-Indigenous	234	96.7	77	89.5	311	94.8
Not stated	3	1.2	3	3.5	6	1.8
Total	242	100.0	86	100.0	328	100.0
Source: ACT Maternal and Perinatal Data Collection and ACT Perinatal Death Data Collection.

Place and type of perinatal death

Table 16 shows the number and percentage of perinatal deaths by place and type of death and time period for the five-year period. Perinatal deaths were classified into the following categories based on place and type: fetal death in-utero, intrapartum death, termination of pregnancy, non-admitted neonatal death, and neonatal intensive care death. In 2016–2020, 90.9% of all perinatal deaths occurred prior to delivery or where the baby was not admitted to the Neonatal Intensive Care Unit (NICU). This is similar to the previous two reporting periods (88.9% in 2011–2015 and 88.8% in 2006–2010). In 2016–2020, 36.0% of all perinatal deaths were the result of terminations of pregnancy, of which all were late terminations. Over 70% (72.4%) of these were terminations of pregnancy for congenital anomalies. The rate of termination of pregnancy has been increasing steadily and is an increase from the 2001–2005 reporting period (16.6%). Deaths that occurred where the baby was not admitted to the NICU were predominantly in the less than 28 week gestation group (146 of 220 deaths). This includes babies born at pre-viable gestational ages in whom resuscitation is not attempted. The most common causes of intrapartum perinatal deaths at term (37 weeks or more gestation) included congenital anomaly and hypoxic peripartum death.

Table 16: Number and percentage of perinatal deaths by place and type of death and time period (5 years), ACT residents, 2001–2020
Place and type of death	2001⁠–⁠2005		2006⁠–⁠2010		2011⁠–⁠2015		2016⁠–⁠2020
Place and type of death	No.	%	No.	%^a	No.	%^a	No.	%
Fetal death in-utero	98	45.2	118	47.4	118	46.8	99	40.9
Intrapartum death	23	10.6	26	10.4	18	7.1	11	4.5
Termination of pregnancy	36	16.6	48	19.3	65	25.8	87	36.0
Non-admitted neonatal death	20	9.2	29	11.6	23	9.1	23	9.5
Neonatal intensive care death	40	18.4	28	11.2	28	11.1	20	8.3
Not stated	0	0.0	0	0.0	0	0.0	2	0.8
Total	217	100.0	249	100.0	252	100.0	242	100.0
Source: ACT Maternal and Perinatal Data Collection and ACT Perinatal Death Data Collection.
^a Due to the rounding of percentages totals may not equal 100%.

Of the 59 neonatal deaths that were reported for ACT residents in 2016–2020, 72.9% survived for one day or less. Of these deaths, 86.0% weighed less than 1,000 grams (see Supplementary Table 32). The majority of neonatal deaths (89.8%) occurred in the first week of life.

Causes of perinatal deaths in the ACT

All perinatal deaths reported in the ACT receive a primary cause of perinatal and neonatal death classified according to the Perinatal Society of Australia and New Zealand (PSANZ) Perinatal Mortality Classification System. The PSANZ Perinatal Mortality Classification System includes a Perinatal Death Classification (PSANZ-PDC) and an additional Neonatal Death Classification (PSANZ-NDC). The high-level groups for the PSANZ-PDC and PSANZ-NDC can be found in Appendix F. As previously outlined, for this report the PSANZ version 3.1 (new coding system) has been used for all perinatal deaths from 2016 onwards (2016 to 2018 have been recoded retrospectively), to allow for comparative data for the most recent five-year reporting period.

Causes of perinatal deaths

Based on the PSANZ-PDC classification system, the leading causes of perinatal death in the ACT in 2016–2020 were:

Congenital anomaly (2.8 deaths per 1,000 births),
Placental dysfunction or causative placental pathology (1.1 deaths per 1,000 births), and
Unexplained antepartum fetal death (1.0 deaths per 1,000 births).

Changes in antecedent causes of perinatal death

A number of changes were noted in the antecedent causes of perinatal deaths in comparison to the previous five-year reporting period (2011–2015). There was a slight increase in perinatal deaths for the following causes of death (PSANZ-PDC):

Congenital anomaly (from 2.3 deaths to 2.8 deaths per 1,000 births), and
Perinatal infection (from 0.6 deaths to 0.9 deaths per 1,000 births).

Congenital anomaly

Of the 76 perinatal deaths attributed to congenital anomalies in 2016–2020, 60 (78.9%) cases were recorded as fetal deaths and 16 (21.1%) as neonatal deaths. The most common congenital anomalies recorded over the five-year period were chromosomal (n = 20; 25.6%), nervous system (n = 15; 19.2%), cardiovascular system (n = 12; 15.4%), and musculoskeletal (n = 9; 11.5%) anomalies.

Perinatal infection

Perinatal infection contributed to 9.9% (n=19) of all perinatal deaths, with unspecified bacterial (n = 8; 33.3%), and E coli (n = 5; 20.8%) accounting for the majority of these infections.

There was a decrease in perinatal deaths for the following causes of death (PSANZ-PDC):

Unexplained antepartum fetal death (from 1.8 deaths to 1.0 death per 1,000 births), and
Specific perinatal conditions (from 1.4 deaths to 0.4 deaths per 1,000 births).

Unexplained antepartum deaths

Of the 242 perinatal deaths reported for ACT residents during the 2016–2020 reporting period, 26 (10.7%) cases were coded as unexplained antepartum deaths. This is a decrease from 19.0% in 2011–2015. Of these deaths, nine (34.6%) cases occurred at less than 23 weeks gestation, two (7.7%) occurred between 23 and 27 weeks gestation, four (15.4%) occurred between 28 and 36 weeks gestation and 11 (42.3%) occurred at greater than 36 weeks gestation.

The proportion of unexplained antepartum deaths at less than 28 weeks gestation for 2016–2020 was 42.3%, which is similar to previous reporting periods (41.7% in 2011–2015, 40.0% in 2006–2010, 42.4% in 2001–2005). The proportion of unexplained antepartum deaths at 37 weeks or more gestation remained stable between 2011–2015 (n=12) and 2016–2020 (n=11).

Specific perinatal conditions

Specific perinatal conditions contributed to 11 perinatal deaths (4.5%) in the 2016–2020 reporting period. Of these deaths, the leading cause was antepartum cord or fetal vessel complications (excludes monochorionic twins or triplets) (n = 8; 72.7%). There were 9 deaths (3.7%) attributable to complications of a multiple gestation pregnancy. Together these categories reflect what was coded as specific perinatal conditions in the previous five-year reporting periods. In comparison, the proportion of perinatal deaths attributable to complications of a multiple gestation pregnancy in the previous reporting period (2011–2015) was 14.3% (n=36) and has decreased since 2006–2010 (n=40; 16%).

Antepartum haemorrhage (APH)

Of the 24 deaths due to antepartum haemorrhage (APH), the most common cause of death was placental abruption (n = 19; 79.2%).

Hypoxic peripartum death

Hypoxic peripartum death has increased from 1.6% of antecedent causes of death in the 2006–2010 reporting period to 3.7% in 2016–2020. The perinatal death rate attributable to hypoxic peripartum death in the ACT (0.3 deaths per 1,000 births) is similar to the nationally reported rate of 0.2 deaths per 1,000 births (Table 7).

Placental dysfunction or causative placental pathology

With the update of the PSANZ classification system, a number of new causes of death categories were created, including the category placental dysfunction or causative placental pathology. Placental dysfunction or causative placental pathology was the third most common cause of perinatal death reported during the 2016–2020 period, contributing to 30 deaths (12.4%). Of these deaths, the leading causes were maternal vascular malperfusion (n = 10; 33.3%), placental hypoplasia (n = 9; 30.0%), and fetal vascular malperfusion (n = 4; 13.3%). The perinatal mortality rate for this category was 1.1 deaths per 1,000 births in 2016–2020. As this is a new PSANZ category, a comparison to the previous reporting period is not possible. The ACT rate of perinatal deaths attributed to placental dysfunction or causative placental pathology (1.1 deaths per 1,000 births) is not significantly different to the rate reported for Australia (0.8 deaths per 1,000 births) (Table 7).

Cause of perinatal death by gestational age

Table 17 shows the number and percentage of perinatal deaths by cause of death (PSANZ-PDC) and gestational age for the five-year period in the ACT. In 2016–2020, the most common causes of perinatal death in the ACT for babies born at term (37 or more weeks gestation) were unexplained antepartum fetal death, specific perinatal conditions, and hypoxic peripartum death. Congenital anomalies, perinatal infection and antepartum haemorrhage were more common causes of death at gestations below 28 weeks, while unexplained antepartum death, placental dysfunction or causative placental pathology, and congenital anomalies were more common causes of death at 28–36 weeks gestation.

Table 17: Number and percentage perinatal deaths by cause of death (PSANZ-PDC) and gestational age (weeks), ACT residents, 2016-2020
PSANZ-PDC^a	Less than 23 weeks		23⁠-⁠27 weeks		28⁠-⁠36 weeks		37 or more weeks		Total
PSANZ-PDC^a	No.	%	No.	%	No.	%^b	No.	%^b	No.	%^b
Congenital anomaly	43	42.2	18	35.3	11	23.4	4	9.5	76	31.4
Perinatal infection	15	14.7	3	5.9	4	8.5	2	4.8	24	9.9
Hypertension	0	0.0	3	5.9	2	4.3	0	0.0	5	2.1
Antepartum haemorrhage	13	12.7	5	9.8	2	4.3	4	9.5	24	9.9
Maternal conditions	2	2.0	2	3.9	2	4.3	0	0.0	6	2.5
Complications of multiple pregnancy	0	0.0	2	3.9	6	12.8	1	2.4	9	3.7
Specific perinatal conditions	2	2.0	1	2.0	1	2.1	7	16.7	11	4.5
Hypoxic peripartum death	0	0.0	0	0.0	3	6.4	6	14.3	9	3.7
Placental dysfunction or causative placental pathology	9	8.8	6	11.8	9	19.1	6	14.3	30	12.4
Spontaneous preterm labour or rupture of membranes (<37 weeks gestation)	9	8.8	7	13.7	3	6.4	0	0.0	19	7.9
Unexplained antepartum fetal death	9	8.8	2	3.9	4	8.5	11	26.2	26	10.7
Neonatal death without obstetric antecedent	0	0.0	0	0.0	0	0.0	1	2.4	1	0.4
Not stated	0	0.0	2	3.9	0	0.0	0	0.0	2	0.8
Total deaths	102	100.0	51	100.0	47	100.0	42	100.0	242	100.0
Total births^c,d	102	0.4	108	0.4	1,893	7.1	24,720	92.2	26,823	100.0
Rate per 1,000 births	1000.0	--	472.2	--	24.8	--	1.7	--	9.0	--
Source: ACT Maternal and Perinatal Data Collection and ACT Perinatal Death Data Collection.
^a Perinatal Society of Australia and New Zealand — Perinatal Death Classification.
^b Due to the rounding of percentages totals may not equal 100%.
^c Total births includes live births and fetal deaths.
^d Percentage values in this row give the percentage of the overall births in each group.

Comparison of causes of perinatal death in ACT residents compared to non-ACT residents

Tables 18, 19 and 20 show the number and percentage of fetal, neonatal and perinatal deaths, respectively, across the five-year reporting period by cause of death using the PSANZ-PDC classifications for ACT residents and non-ACT residents who gave birth in the ACT. In 2016–2020, the main antecedent cause of perinatal death for both ACT residents and non-ACT residents who gave birth in the ACT was congenital anomaly. Non-ACT residents had a higher proportion of perinatal deaths related to complications of multiple pregnancy and congenital anomalies. Patients from outside the ACT are usually referred to Canberra Health Services for the management of a high risk or complicated pregnancy when they need to access high risk obstetric care or neonatal intensive care services. Multiple pregnancies and those complicated by congenital anomalies are considered high risk.

Table 18: Number and percentage of fetal deaths by antecedent cause of death (PSANZ-PDC), ACT and non-ACT residents, 2016–2020
PSANZ-PDC^a	ACT Residents		Non-ACT Residents
PSANZ-PDC^a	No.	%	No.	%
Congenital anomaly	60	32.8	32	48.5
Perinatal infection	19	10.4	5	7.6
Hypertension	3	1.6	1	1.5
Antepartum haemorrhage	14	7.7	4	6.1
Maternal conditions	6	3.3	0	0.0
Complications of multiple pregnancy	8	4.4	4	6.1
Specific perinatal conditions	9	4.9	3	4.5
Hypoxic peripartum death	4	2.2	0	0.0
Placental dysfunction or causative placental pathology	28	15.3	7	10.6
Spontaneous preterm labour or rupture of membranes (<37 weeks gestation)	5	2.7	1	1.5
Unexplained antepartum fetal death	26	14.2	9	13.6
Neonatal death without obstetric antecedent	0	0.0	0	0.0
Not stated	1	0.5	0	0.0
Total	183	100.0	66	100.0
Source: ACT Maternal and Perinatal Data Collection and ACT Perinatal Death Data Collection.
^a Perinatal Society of Australia and New Zealand — Perinatal Death Classification.

Table 19: Number and percentage of neonatal deaths by antecedent cause of death (PSANZ-PDC), ACT and non-ACT residents, 2016–2020
PSANZ-PDC^a	ACT Residents		Non-ACT Residents
PSANZ-PDC^a	No.	%	No.	%
Congenital anomaly	16	27.1	5	25.0
Perinatal infection	5	8.5	2	10.0
Hypertension	2	3.4	0	0.0
Antepartum haemorrhage	10	16.9	3	15.0
Maternal conditions	0	0.0	0	0.0
Complications of multiple pregnancy	1	1.7	3	15.0
Specific perinatal conditions	2	3.4	0	0.0
Hypoxic peripartum death	5	8.5	2	10.0
Placental dysfunction or causative placental pathology	2	3.4	0	0.0
Spontaneous preterm labour or rupture of membranes (<37 weeks gestation)	14	23.7	4	20.0
Unexplained antepartum fetal death	0	0.0	0	0.0
Neonatal death without obstetric antecedent	1	1.7	1	5.0
Not stated	1	1.7	0	0.0
Total	59	100.0	20	100.0
Source: ACT Maternal and Perinatal Data Collection and ACT Perinatal Death Data Collection.
^a Perinatal Society of Australia and New Zealand — Perinatal Death Classification.

Table 20: Number and percentage of perinatal deaths by antecedent cause of death (PSANZ-PDC), ACT and non-ACT residents, 2016–2020
PSANZ-PDC^a	ACT Residents		Non-ACT Residents
PSANZ-PDC^a	No.	%^b	No.	%^b
Congenital anomaly	76	31.4	37	43.0
Perinatal infection	24	9.9	7	8.1
Hypertension	5	2.1	1	1.2
Antepartum haemorrhage	24	9.9	7	8.1
Maternal conditions	6	2.5	0	0.0
Complications of multiple pregnancy	9	3.7	7	8.1
Specific perinatal conditions	11	4.5	3	3.5
Hypoxic peripartum death	9	3.7	2	2.3
Placental dysfunction or causative placental pathology	30	12.4	7	8.1
Spontaneous preterm labour or rupture of membranes (<37 weeks gestation)	19	7.9	5	5.8
Unexplained antepartum fetal death	26	10.7	9	10.5
Neonatal death without obstetric antecedent	1	0.4	1	1.2
Not stated	2	0.8	0	0.0
Total	242	100.0	86	100.0
Source: ACT Maternal and Perinatal Data Collection and ACT Perinatal Death Data Collection.
^a Perinatal Society of Australia and New Zealand — Perinatal Death Classification.
^b Due to the rounding of percentages totals may not equal 100%.

Causes of fetal deaths

In 2016–2020, the most common causes of fetal death in the ACT were:

Congenital anomaly (32.8%; 2.2 per 1,000 births),
Placental dysfunction or causative placental pathology (15.3%; 1.0 per 1,000 births), and
Unexplained antepartum fetal death (14.2%; 1.0 per 1,000 births).

Causes of neonatal deaths

Neonatal deaths were analysed using the PSANZ-NDC classification system, which classifies the most common factors present during the neonatal period that contributed to the death.

Table 21 shows the number, percentage and rate of PSANZ-NDC causes of neonatal deaths for the five-year period in the ACT. In 2016–2020, the main PSANZ-NDC classified causes of neonatal death were:

Periviable infants (typically <24 weeks) (44.1%; 1.0 deaths per 1,000 live births),
Neurological conditions (18.6%; 0.4 deaths per 1,000 live births), and
Congenital anomaly (16.9%; 0.4 deaths per 1,000 live births).

Changes in antecedent causes of neonatal death

In comparison to the previous five-year reporting period (2011–2015), there was a decrease in neonatal deaths caused by congenital anomaly (from 22.0% in 2011–2015 to 16.9% in 2016–2020).

The neonatal mortality rate for the ACT remained unchanged from the previous reporting period at 2.2 deaths per 1,000 live births and is a decrease from 3.2 neonatal deaths per 1,000 ACT resident live births in 2001–2005. Of the 26 neonatal deaths recorded in 2016–2020 due to extreme prematurity (periviable infants [typically <24 weeks]), 25 were considered previable and were not resuscitated. Of the 11 deaths (18.6%) attributable to neurological conditions, the causes of death were hypoxic ischaemic encephalopathy/perinatal asphyxia (n = 7; 63.6%) and intracranial haemorrhage (n = 4; 36.4%). The rate of neonatal death due to neurological conditions has remained stable since 2001.

Congenital anomaly was the main cause of neonatal death for singleton babies (29.1%), while spontaneous preterm labour or rupture of membranes (<37 weeks gestation) was the main cause of death for multiple birth babies (75.0%).

Table 21: Number, percentage and rate of neonatal deaths by cause of death (PSANZ-NDC), ACT residents, 2016–2020
PSANZ-NDC^a	No.	%	Rate^b	95% CI^c
Congenital anomaly	10	16.9	0.4	(0.1⁠–⁠0.6)
Periviable infants (typically <24 weeks)	26	44.1	1.0	(0.6⁠–⁠1.4)
Cardio-respiratory disorders	2	3.4	n.p	n.p
Neonatal infection	2	3.4	n.p	n.p
Neurological	11	18.6	0.4	(0.2⁠–⁠0.7)
Gastrointestinal	1	1.7	n.p	n.p
Other	1	1.7	n.p	n.p
Not stated	6	10.2	0.2	(0.0⁠–⁠0.4)
Total	59	100.0	2.2	(1.6⁠–⁠2.8)
Source: ACT Maternal and Perinatal Data Collection and ACT Perinatal Death Data Collection.
n.p. = not published. Not calculated due to small numbers.
^a Perinatal Society of Australia and New Zealand — Neonatal Death Classification.
^b Rate per 1,000 live births.
^c CI = confidence interval.

Table 22 shows the number, percentage and rate of PSANZ-PDC classified causes of neonatal death for the five-year period in the ACT. Based on the PSANZ-PDC classification system, which classifies the main obstetric factors that contributed to the death, the leading causes of neonatal deaths in the ACT in 2016–2020 were congenital anomaly (27.1%), spontaneous preterm labour or rupture of membranes (<37 weeks gestation) (23.7%), and antepartum haemorrhage (16.9%).

Table 22: Number, percentage and rate of neonatal deaths by cause of death (PSANZ-PDC), ACT residents, 2016–2020
PSANZ-PDC^a	No.	%	Rate^b	95% CI^c
Congenital anomaly	16	27.1	0.6	(0.3⁠–⁠0.9)
Perinatal infection	5	8.5	0.2	(0.0⁠–⁠0.4)
Hypertension	2	3.4	n.p	n.p
Antepartum haemorrhage	10	16.9	0.4	(0.1⁠–⁠0.6)
Maternal conditions	0	0.0	n.p	n.p
Complications of multiple pregnancy	1	1.7	n.p	n.p
Specific perinatal conditions	2	3.4	n.p	n.p
Hypoxic peripartum death	5	8.5	0.2	(0.0⁠–⁠0.4)
Placental dysfunction or causative placental pathology	2	3.4	n.p	n.p
Spontaneous preterm labour or rupture of membranes (<37 weeks gestation)	14	23.7	0.5	(0.3⁠–⁠0.8)
Unexplained antepartum fetal death	0	0.0	n.p	n.p
Neonatal death without obstetric antecedent	1	1.7	n.p	n.p
Not stated	1	1.7	n.p	n.p
Total	59	100.0	2.2	(1.6⁠–⁠2.8)
Source: ACT Maternal and Perinatal Data Collection and ACT Perinatal Death Data Collection.
n.p. = not published. Not calculated due to small numbers.
^a Perinatal Society of Australia and New Zealand — Perinatal Death Classification.
^b Rate per 1,000 live births.
^c CI = confidence interval.

Cause of neonatal death by gestational age and birthweight

Table 23 shows the number and percentage of PSANZ-NDC classified causes of neonatal death by gestational age for the five-year period in the ACT. In 2016–2020, extreme prematurity (less than 28 weeks gestation) accounted for 71.2% of neonatal deaths, while premature births (less than 37 weeks gestation) accounted for 81.4% of neonatal deaths. The neonatal mortality rate for pre-term babies (less than 37 weeks gestation) was 24.6 deaths per 1,000 live births, while the overall neonatal mortality rate was 2.2 deaths per 1,000 live births.

Table 23: Number and percentage of neonatal deaths by cause of death (PSANZ-NDC) and gestational age (weeks), ACT residents, 2016-2020
PSANZ-NDC^a	Less than 23 weeks		23⁠–⁠27 weeks		28⁠–⁠36 weeks		37 or more weeks		Total
PSANZ-NDC^a	No.	%	No.	%^b	No.	%^b	No.	%^b	No.	%
Congenital anomaly	6	22.2	3	20.0	0	0.0	1	9.1	10	16.9
Periviable infants (typically <24 weeks)	19	70.4	7	46.7	0	0.0	0	0.0	26	44.1
Cardio-respiratory disorders	0	0.0	0	0.0	1	16.7	1	9.1	2	3.4
Neonatal infection	0	0.0	1	6.7	0	0.0	1	9.1	2	3.4
Neurological	0	0.0	3	20.0	3	50.0	5	45.5	11	18.6
Gastrointestinal	0	0.0	0	0.0	1	16.7	0	0.0	1	1.7
Other	0	0.0	0	0.0	0	0.0	1	9.1	1	1.7
Not stated	2	7.4	1	6.7	1	16.7	2	18.2	6	10.2
Total deaths	27	100.0	15	100.0	6	100.0	11	100.0	59	100.0
Live births^c	27	0.1	72	0.3	1,852	7.0	24,689	92.7	26,640	100.0
Rate per 1,000 live births	1000.0	--	208.3	--	3.2	--	0.4	--	2.2	--
Source: ACT Maternal and Perinatal Data Collection and ACT Perinatal Death Data Collection.
^a Perinatal Society of Australia and New Zealand — Neonatal Death Classification.
^b Due to the rounding of percentages totals may not equal 100%.
^c Percentage values in this row give the percentage of the overall births in each group.

Table 24 shows the number and percentage of PSANZ-NDC classified causes of neonatal death by birthweight for the five-year period in the ACT. Extremely low birthweight (less than 1,000 grams) represented 0.4% of all live births and accounted for 69.5% of neonatal deaths, while babies with a birthweight less than 2,500 grams represented 6.2% of live births and 79.7% of neonatal deaths. The neonatal mortality rate for babies that weighed less than 1,000 grams was 431.6 deaths per 1,000 live births, while the rate for babies who weighed from 1,000 grams to less than 2,500 grams was 3.9 deaths per 1,000 live births.

The most common PSANZ-NDC classified causes of neonatal death varied depending on the birthweight of the baby. For neonatal deaths, periviable infants (typically <24 weeks) was the most common cause for babies weighing less than 1,000 grams, while neurological conditions were the main cause of death for babies weighing more than 1,000 grams.

Table 24: Number and percentage of neonatal deaths by cause of death (PSANZ-NDC) and birthweight (grams), ACT residents, 2016–2020
PSANZ-NDC^a	Less than 1,000 grams		1,000⁠–⁠2,499 grams		2,500 or more grams		Not stated		Total
PSANZ-NDC^a	No.	%^b	No.	%^b	No.	%^b	No.	%	No.	%
Congenital anomaly	8	19.5	1	16.7	1	9.1	0	0.0	10	16.9
Periviable infants (typically <24 weeks)	26	63.4	0	0.0	0	0.0	0	0.0	26	44.1
Cardio-respiratory disorders	0	0.0	1	16.7	1	9.1	0	0.0	2	3.4
Neonatal infection	1	2.4	0	0.0	1	9.1	0	0.0	2	3.4
Neurological	3	7.3	3	50.0	4	36.4	1	100.0	11	18.6
Gastrointestinal	0	0.0	1	16.7	0	0.0	0	0.0	1	1.7
Other	0	0.0	0	0.0	1	9.1	0	0.0	1	1.7
Not stated	3	7.3	0	0.0	3	27.3	0	0.0	6	10.2
Total deaths	41	100.0	6	100.0	11	100.0	1	100.0	59	100.0
Live births^c	95	0.4	1,549	5.8	24,994	93.8	2	0.0	26,640	100.0
Rate per 1,000 live births	431.6	--	3.9	--	0.4	--	n.p	--	2.2	--
Source: ACT Maternal and Perinatal Data Collection and ACT Perinatal Death Data Collection.
n.p. = not published. Not calculated due to small numbers.
^a Perinatal Society of Australia and New Zealand — Neonatal Death Classification.
^b Due to the rounding of percentages totals may not equal 100%.
^c Percentage values in this row give the percentage of the overall births in each group.

Post-mortem investigation of perinatal deaths

This section of the report outlines the post-mortem investigations, autopsy and placental histological examinations performed following perinatal deaths in the ACT during the 2016–2020 reporting period.

Autopsy

In this report, all autopsy types are collectively referred to as a death where an ‘autopsy’ has been undertaken. The purpose of a perinatal autopsy is to accurately identify the cause(s) of death. Autopsy results enable appropriate counselling to be provided to parents and ensure that a high standard of perinatal audit is maintained. Perinatal autopsy examinations require written consent from the parent(s), following an explanation of the procedure and the availability of suitable materials to assist with their decision-making. The ACT government follows the recommendations of the Royal College of Pathologists that every family experiencing perinatal loss should be offered an autopsy, and where an autopsy is not performed, alternative investigations should be made available.

Table 25 shows the number and percentage of autopsies by fetal, neonatal and perinatal deaths across the five-year reporting period in the ACT. In 2016–2020, 96.3% of perinatal deaths (178 fetal deaths and 55 neonatal deaths) had an autopsy status recorded. Of the perinatal deaths where autopsy status was known, perinatal autopsies were reported to have been performed for 59.6% of fetal deaths and 47.5% of neonatal deaths.

The perinatal autopsy rate for babies born to ACT residents in the 2016–2020 reporting period was 56.6%. This was a slight decrease from the previous five-year reporting period (59.1%), but was higher than the 2020 national autopsy rate where an autopsy was reported to have been performed in 37% of perinatal deaths in Australia.⁶

A total of 13 perinatal deaths that received an autopsy (either limited or full) remained unexplained, as a definitive cause of death could not be determined.

Table 25: Number and percentage of perinatal post-mortem investigations by fetal, neonatal and perinatal deaths, ACT residents, 2016–2020
Post-mortem investigation	Fetal deaths		Neonatal deaths		Perinatal deaths
Post-mortem investigation	No.	%^a	No.	%	No.	%
Autopsy performed:	109	59.6	28	47.5	137	56.6
Full autopsy performed	74	40.4	15	25.4	89	36.8
Limited autopsy performed	35	19.1	13	22.0	48	19.8
No autopsy or examination performed	59	32.2	25	42.4	84	34.7
Other examination — external and investigations	10	5.5	2	3.4	12	5.0
Not stated	5	2.7	4	6.8	9	3.7
Total	183	100.0	59	100.0	242	100.0
Source: ACT Maternal and Perinatal Data Collection and ACT Perinatal Death Data Collection.
Note: Reporting of the category 'Other examinations — external and investigations' only commenced in 2017.
^a Due to the rounding of percentages totals may not equal 100%.

Table 26 shows the number of perinatal deaths and percentage of perinatal autopsies performed for the top five reported antecedent causes of death (PSANZ-PDC) for the five-year reporting period. In 2016–2020, in 80% of cases where the perinatal deaths in the ACT were classified as placental dysfunction or causative placental pathology, some form of autopsy was performed. An autopsy was less likely to be performed (56.6%) in the context of an antenatally detected congenital abnormality. Over 60% of perinatal deaths within the perinatal infection category and the antepartum haemorrhage category had autopsies performed. Where the death remained unexplained, only 50% of those deaths had had some form of autopsy.

Table 26: Number of perinatal deaths and percentage of perinatal autopsies performed by the top five reported antecedent causes of death (PSANZ-PDC), ACT residents, 2016–2020
Autopsies by PSANZ-PDC^a	Deaths	Autopsies
Autopsies by PSANZ-PDC^a	No.	%^b
Congenital anomaly	76	56.6
Placental dysfunction or causative placental pathology	30	80.0
Unexplained antepartum fetal death	26	50.0
Perinatal infection	24	62.5
Antepartum haemorrhage	24	62.5
Spontaneous preterm labour or rupture of membranes (<37 weeks gestation)	19	31.6
Total	242	56.6
Source: ACT Maternal and Perinatal Data Collection and ACT Perinatal Death Data Collection.
^a Perinatal Society of Australia and New Zealand — Perinatal Death Classification.
^b Percentage refers to the percentage of perinatal deaths in each category where an autopsy was performed. For example, 56.6% of perinatal deaths within the congenital anomaly category had an autopsy.

Placental examination

The placenta is a gestational organ that is essential to a baby’s development and survival prior to birth. It provides a record of pregnancy-related events and changes to the intrauterine environment.¹⁴ Therefore, a histological examination should be considered after all births, particularly in the event of an adverse fetal outcome, including when a fetal death has occurred.¹⁵

Table 27 shows the number and percentage of placental histological examinations by fetal, neonatal and perinatal deaths across the five-year reporting period in the ACT. In 2016–2020, there were 229 perinatal deaths (173 fetal deaths and 56 neonatal deaths) with a reported placental histology status. Of these, over 90 % (n= 220) of placental histological examinations were performed for 166 fetal deaths and 54 neonatal deaths.

Table 27: Histology of the placenta by fetal, neonatal and perinatal deaths (number and percentage), ACT residents, 2016–2020
Histology of the placenta	Fetal deaths		Neonatal deaths		Perinatal deaths
Histology of the placenta	No.	%	No.	%	No.	%
Histology performed	166	90.7	54	91.5	220	90.9
No histology performed	7	3.8	2	3.4	9	3.7
Not stated	10	5.5	3	5.1	13	5.4
Total	183	100.0	59	100.0	242	100.0
Source: ACT Maternal and Perinatal Data Collection and ACT Perinatal Death Data Collection.

Conclusion

Perinatal Mortality in the ACT 2016–2020 is the fourth report from the Committee on the epidemiology of perinatal deaths in the ACT. The perinatal mortality rate for this five-year reporting period was 9.0 deaths per 1,000 live births. It has decreased from 10.6 deaths per 1,000 live births reported in 2001–2005 and remained stable since the previous five-year reporting period (2011–2015; 9.5 deaths per 1,000 live births). There was no significant difference in the five-year combined rate for the ACT and Australia. The annual perinatal mortality rate for the ACT in 2020 was significantly lower than the rate reported for Australia and was the lowest reported annual perinatal mortality rate in the ACT since 2009. Whilst the annual perinatal mortality rates are reassuring, as discussed in the main body of the report, this may be due to statistical variation or external factors such as the COVID-19 pandemic, in addition to improvements in care.

In 2017, the PSANZ classification system was revised to improve placental pathology and unexplained stillbirth classification. For this report all perinatal deaths were recoded retrospectively for 2016 to 2018 using PSANZ version 3.1 and the new coding system implemented from 2019 onwards, to allow for comparative data for the most recent five-year reporting period. The revision has resulted in placental pathology and fetal growth restriction (FGR) not being directly comparable. Therefore, for 2016–2020, there are no results for FGR, making a direct comparison of FGR with previous reporting periods impossible. In the ACT, rates of perinatal loss associated with FGR declined significantly between 2006–2010 and 2011–2015, from 35 to 17 deaths (1.5 to 0.6 deaths per 1,000 births). The Committee will continue to monitor the incidence of FGR in the ACT while interventions such as the Safer Baby Bundle continue to be implemented to reduce the incidence of unrecognized fetal growth restriction.

The hypoxic peripartum death rates in the ACT increased in 2016–2020 but were not significantly different from national rates. Neonatal deaths as a result of hypoxic ischaemic encephalopathy (HIE) have not changed between reporting periods. The Committee intends to undertake a review of HIE cases in the ACT to identify trends in contributory factors and opportunities for quality improvement.

There was an increase of perinatal deaths that were the result of late terminations of pregnancy, from 15.7% (n=34) in 2001–2005 to 36.0% (n=87) in 2016–2020. Furthermore, the rate of termination of pregnancy has been increasing steadily and is an increase from the 2001–2005 reporting period (16.6%). Many reasons may explain this, including changes to how women accessed care for termination of pregnancy because of border closures during the COVID-19 pandemic in 2020. The Committee believes that monitoring congenital anomaly rates is important to identify trends in the incidence of life limiting congenital anomalies in the ACT.

According to the PSANZ Perinatal Mortality Classification System, congenital anomaly was the leading cause of fetal deaths (35.0%) and the third leading cause of neonatal deaths (15.3%) in the ACT in 2016–2020. This is consistent with national data where congenital anomaly was the most commonly classified cause of perinatal death (33%) and second most commonly classified cause of neonatal deaths (31%) in 2020.⁶ As congenital anomalies are a major cause of perinatal death as well as contributing to disability and death in children, the Committee recommends implementation of an ACT congenital anomaly register, where all congenital anomalies identified in the Territory are reported and monitored. This will provide comprehensive epidemiological information on congenital anomalies in the ACT to assess the impact of known or suspected risk factors and translate it into information for effective management of health services. The ACT congenital anomaly register would also contribute to the National Congenital Anomalies Data Collection that is currently being re-established.

In December 2020, the Australian Government launched The National Stillbirth Action and Implementation Plan (the Plan). It is the first Australia-wide plan with the goal of reducing preventable stillbirths after 28 weeks in Australia by 20% or more over five years.¹⁶ The Australian Government and the state and territory governments have implemented several clinical practice recommendations through the Safer Baby Bundle that aims to reduce rates of late gestation stillbirth.¹² In the ACT, in 2016–2020, the risk of perinatal death for babies born at more than 28 weeks gestation (late gestation fetal deaths) was 3.3 deaths per 1,000 births, which was higher than the 2020 national rate of late gestation fetal deaths (2.4 deaths per 1,000 births). The Committee hopes to see reductions in the incidence of late gestation stillbirth in the coming years following the launch of the Safer Baby Bundle initiative in the ACT and move towards the recommended goal of less than two late stillbirths per 1,000 births by 2030.¹⁶

The Plan also aims to reduce disparities in stillbirth rates between population groups, raise community awareness and understanding of stillbirth and ensure high quality bereavement care and support is available to families who experience stillbirth, including support during and after stillbirth investigations.¹⁶

The correct classification of causes of perinatal death depends on the availability of stillbirth investigation results, including autopsy and placental histological examinations. In 2016–2020, over 90% of perinatal deaths (90.7% of fetal deaths and 91.5% of neonatal deaths) had a placental histological examination performed, and whilst during this five-year reporting period, the ACT perinatal autopsy rate was higher than the 2020 autopsy rate (37%) for perinatal deaths in Australia, it continues to be lower than the 75% recommended by the Royal College of Pathologists.¹⁵. The key factor to achieving adequate autopsy rates is obtaining parental consent.¹⁷ About one-third of all perinatal deaths in the ACT had no autopsy or examination performed and for some perinatal deaths a cause was never found and these were classified as unexplained. In this five-year reporting period, unexplained antepartum fetal death (14.2%) was the third most common cause of perinatal death in the ACT. The decrease in unexplained antepartum deaths could be attributed to the changes to the PSANZ classification system (version 3.1). The new classification system allows teams to code deaths due to placental abnormalities in far more detail than earlier versions. It is important that the value of conducting an autopsy is recognised in minimising the proportion of perinatal deaths listed as unexplained. Healthcare professionals should be trained in how to approach grieving parents and families to discuss the value of autopsy. The Committee will continue to support the Improving Perinatal Mortality Review and Outcomes via Education (IMPROVE) course, which is based on the Clinical Practice Guideline for Care around Stillbirth and Neonatal Death. It aims to improve the ability of healthcare professionals to manage perinatal death, part of which is discussing the role of perinatal autopsy with bereaved parents and families.

The Committee now reviews the contributing factors for perinatal deaths in the ACT. This is a new addition to the ACT Perinatal Death Data Collection that has been collected since 2017. For this report, there were insufficient data to make a meaningful interpretation of contributory factors. As these data mature, the Committee will analyse and report on social determinants in the future for babies that have a contributory factor recorded and include recommendations, if applicable. If the data allow, it will be used to monitor causes and contributing factors for perinatal deaths and inform antenatal care to reduce inequities among groups who are at increased risk of fetal death in the ACT.

This five-year report includes data for 2020, which is the same year as the bushfire threats to the ACT and the first year of the COVID-19 pandemic. The COVID-19 pandemic has affected many areas of people’s lives, including their access to and use of maternal and perinatal services. The potential impact, if any, of these events will be further investigated in the future as more data are available. With the revision of the PSANZ Perinatal Mortality Classification System, the launch of the Plan in 2020 and the recommended goal of less than two late stillbirths per 1,000 births by 2030, the continued monitoring of perinatal mortality trends will remain critical.

Appendices

Appendix A - Terms of Reference

The ACT Perinatal and Maternal Mortality Committee is a sub-committee of the ACT Maternal Perinatal Information Network Committee. The membership will include:

An obstetrician with involvement in high-risk pregnancy and fetal medicine;
A fetal medicine specialist;
An obstetrician;
A neonatologist;
A pathologist with involvement in perinatal pathology;
A representative from the Epidemiology Section, Data Analytics Branch, Policy, Partnerships and Programs Division;
A midwife representative from each of the hospitals providing maternity services in the ACT;
A perinatal and maternal mortality data collection officer; and
Any other members the committee feels are appropriate.

The role of the Committee is to:

Review all perinatal and maternal deaths that occur in the ACT;
Classify all perinatal deaths according to the PSANZ classification system;
Provide an annual non-public report to the ACT Health Quality and Safety Committee on perinatal deaths;
Provide a five-year public health report for ACT Health on Perinatal Mortality;
Provide maternal mortality data to the National Report on Maternal Mortality;
Provide data for the ACT Child and Young People Death Review Committee;
Liaise with the ACT Maternity Services Advisory Network with relevant information related to perinatal and maternal mortality and services within the ACT.
Provide data for the National Report on Perinatal Mortality.

Appendix B - Methods

Clinical classification

All perinatal deaths reported in the ACT receive a primary cause of perinatal and neonatal death code based on the Perinatal Society of Australia and New Zealand — Perinatal Death Classification (PSANZ-PDC) and the Perinatal Society of Australia and New Zealand — Neonatal Death Classification (PSANZ-NDC). The use of these classifications ensures that the ACT can contribute to national reporting and enables state, territory and national comparisons. Furthermore, it ensures that the aetiology of these deaths is established and any factors that may prevent future deaths are identified. An additional benefit of this work is that it has the potential to identify possible areas of research in perinatal mortality that may help to reduce the number of these deaths deemed preventable. The PSANZ classification system was revised in 2017 to improve placental pathology and unexplained stillbirth classification, with the new classification taking effect from 1st January 2019. The data prior to 2019 are classified according to PSANZ version 2.2, while data from 2019 are classified according to PSANZ version 3.1 and the versions are not comparable (see here for changes to the PSANZ Death Classification and PSANZ Neonatal Death Classification). For this report all perinatal deaths have been recoded retrospectively for 2016 to 2018 and the new coding system implemented from 2019 onwards, to allow for comparative data for the most recent five-year reporting period.

Data collection

The primary data source for this report is the ACT Confidential Report on Perinatal Death Form (see Appendix E), which includes placental pathology and autopsy details. Data is cross-referenced with the ACT Maternal Perinatal Data Collection, the ACT Admitted Patient Care data collection and ACT mortality data. Forms for perinatal deaths that occur at The Canberra Hospital (TCH) are initially completed by midwives caring for mother and baby in the Birthing Suite. Finalisation of data is performed by the ACT PMMC data coordinator and Chairperson of the ACT PMMC and sent to the Epidemiology Section for entering into the database. Forms for perinatal deaths that occur at other ACT hospitals are completed by the hospital’s midwifery representatives or a designated person and forwarded to the ACT PMMC Chair and finalised with the ACT PMMC data coordinator.

The Committee meets three times per year to review and classify all cases. This information is included in the ACT Maternal and Perinatal Data Collection (ACT MPDC). The ACT MPDC collects information and reports on live births and fetal deaths of at least 20 weeks gestation or, where gestation is not known, a birthweight of at least 400 grams. Data are collected on births that occur in hospitals, birth centres and the community. To ensure quality and completeness, these data are validated against the ACT Admitted Patient Care Data Collection and mortality data sourced from the ABS. The ACT MPDC is provided to the National Perinatal Data Collection for national reporting. ABS perinatal death data includes perinatal deaths registered with Birth, Deaths and Marriages in each of the states and territories in Australia. These data are reported annually by the ABS by the mother’s usual state of residence.

The Committee has permission to release information from the ACT Perinatal Mortality Dataset under the provision that it does not risk the confidentiality of individuals. In addition, all requests for information related to the ACT Perinatal Mortality Dataset are reviewed by the Committee. Formal research projects must conform to National Health and Medical Research Council Guidelines and be approved by the ACT Health Human Research Ethics Committee. This report focuses only on perinatal mortality. Information relating to maternal mortality is reported in the Australian Institute of Health and Welfare Maternal Deaths in Australia national report.

Statistical analysis

In this report, rates are reported alongside confidence intervals where appropriate. A confidence interval is a computed interval with a given probability (95% in this report) that the true value of a statistic, such as a rate, mean or proportion is contained within the interval. In this report, differences in rates are described as statistically significant when the rates have non-overlapping 95% confidence intervals. The use of this conservative method may result in rates that are marginally significantly different at the p < 0.05 level being classified as not statistically significant.

When considering changes in perinatal mortality over time, rolling average rates were used. Rolling averages increase the size of the sample from which the rate is calculated, which reduces the contribution of noise to the estimate and makes it easier to identify trends in the data. For a given year, a rolling rate was calculated using all births and deaths across three years — the year of interest, the previous year and the next year. For example, the rolling average for 2017 was calculated using all the births and deaths across 2016, 2017 and 2018. For the final year in the data set (2020), no data was available from the next year (2021), and so the rolling rate was calculated using births and deaths from just the previous year and the year itself (2019 and 2020).

For this reporting period (2016 to 2020), national data for the year 2020 published by the Australian Institute of Health and Welfare was used to compare perinatal death rates for ACT and Australia. The authors acknowledge the limitations of this comparison.

Definitions

Fetal death — The death of a baby prior to birth (alternatively, stillbirth).

Fetal death rate — The number of fetal deaths per 1,000 total births.

Live birth — The complete expulsion or extraction from its mother of a product of conception, irrespective of the duration of pregnancy, which, after such separation, breathes or shows any other evidence of life, such as beating of the heart, pulsation of the umbilical cord, or definite movement of voluntary muscles, whether or not the umbilical cord has been cut or the placenta is attached; each product of such a birth is considered live born (WHO definition).¹⁴

Neonatal death — The death of an infant within 28 days of birth.

Neonatal mortality rate — The number of deaths of live born infants under 28 days of age per 1,000 live births.

Infant death — The death of a live born infant under one year of age and includes neonatal deaths and postneonatal deaths up to 1 year.

Infant mortality rate — The number of deaths of infants under 1 year of age per 1,000 live births.

Perinatal death — Refers to a fetal death or a neonatal death.

Perinatal mortality rate — The number of fetal and neonatal deaths per 1,000 total births.

Appendix C - Data specifications

For this five-year report, the authors decided to use variables predominately from the ACT MPDC due to increased reliability of the data and the ability to link the PDDC data with the MPDC data. It also improves the ability to supplement missing data from the PDDC. Table 28 shows the variables and data collections used for the 2016–2020 report.

Table 28: Variables and data collections used for the Perinatal Mortality Report 2016⁠–⁠2020
Variable	Data collection	Description
baby_rec	MPDC	Baby MPDC record ID
year	MPDC	Year of birth of baby
StateID	MPDC	Maternal state of residence
baby_sex	MPDC	Sex of baby
baby_dob	MPDC	Date of birth of baby
baby_dod	MPDC	Date of death of baby
moth_age	MPDC	Maternal age
smoke	MPDC	Maternal smoking status during pregnancy
ATSIStatusMother	MPDC	Maternal indigenous status
ATSIStatusBaby	MPDC	Indigenous status of baby
gest_age	MPDC	Gestational age at birth
birthwt	MPDC	Birthweight of baby
plural	MPDC	Plurality
bcond	MPDC	Birth outcome (binary)
baby_out	MPDC	Fetal-infant outcome
bmi	MPDC	Maternal body mass index
subabuse	MPDC	Maternal substance abuse
AlcoholFreqA20	MPDC	Maternal alcohol consumption after 20 weeks pregnancy (2019–2020)
AlcoholFreqB20	MPDC	Maternal alcohol consumption before 20 weeks pregnancy (2019–2020)
alcohol	MPDC	Maternal alcohol consumption (before 2019)
MpdcId	PDDC	MPDC record ID
assiscon	PDDC	Assisted conception status
PSANZPDC1Cat	PDDC	Primary PSANZ PDC code category
PSANZ_PDC1	PDDC	Primary PSANZ PDC code
PSANZ_NDC1	PDDC	Primary PSANZ NDC code
typedeat	PDDC	Type of perinatal death
postmort	PDDC	Autopsy status from 2017
postmort_Pre2017	PDDC	Autopsy status before 2017
histplac	PDDC	Histology of placenta status
Sex	ABWC	Sex of baby
GestationalAge	ABWC	Gestational age at birth
BWCentile10th	ABWC	Birthweight centile for Australian babies by sex and gestational age
Legend: MPDC = ACT Maternal and Perinatal Data Collection; PDDC = ACT Perinatal Death Data Collection; ABWC = Australian Birthweight Centiles AIHW; PSANZ PDC = Perinatal Society of Australia and New Zealand Perinatal Death Classification; PSANZ NDC = Perinatal Society of Australia and New Zealand Neonatal Death Classification

Appendix D - Summary of perinatal deaths

Table 29: Number and percentage of fetal, neonatal and perinatal deaths by year of birth and usual place of residence, 2001–2020
Year	Fetal deaths		Neonatal deaths		Perinatal deaths
Year	No.	%	No.	%	No.	%
2001
ACT Residents	29.0	82.9	6.0	33.3	35.0	66.0
Non-ACT Residents	6.0	17.1	12.0	66.7	18.0	34.0
Total	35.0	100.0	18.0	100.0	53.0	100.0
2002
ACT Residents	25.0	71.4	9.0	37.5	34.0	57.6
Non-ACT Residents	10.0	28.6	15.0	62.5	25.0	42.4
Total	35.0	100.0	24.0	100.0	59.0	100.0
2003
ACT Residents	38.0	71.7	17.0	58.6	55.0	67.1
Non-ACT Residents	15.0	28.3	12.0	41.4	27.0	32.9
Total	53.0	100.0	29.0	100.0	82.0	100.0
2004
ACT Residents	25.0	75.8	19.0	70.4	44.0	73.3
Non-ACT Residents	8.0	24.2	8.0	29.6	16.0	26.7
Total	33.0	100.0	27.0	100.0	60.0	100.0
2005
ACT Residents	36.0	75.0	13.0	68.4	49.0	73.1
Non-ACT Residents	12.0	25.0	6.0	31.6	18.0	26.9
Total	48.0	100.0	19.0	100.0	67.0	100.0
2006
ACT Residents	33.0	67.3	18.0	60.0	51.0	64.6
Non-ACT Residents	16.0	32.7	12.0	40.0	28.0	35.4
Total	49.0	100.0	30.0	100.0	79.0	100.0
2007
ACT Residents	33.0	80.5	14.0	56.0	47.0	71.2
Non-ACT Residents	8.0	19.5	11.0	44.0	19.0	28.8
Total	41.0	100.0	25.0	100.0	66.0	100.0
2008
ACT Residents	42.0	75.0	15.0	60.0	57.0	70.4
Non-ACT Residents	14.0	25.0	10.0	40.0	24.0	29.6
Total	56.0	100.0	25.0	100.0	81.0	100.0
2009
ACT Residents	32.0	71.1	3.0	23.1	35.0	60.3
Non-ACT Residents	13.0	28.9	10.0	76.9	23.0	39.7
Total	45.0	100.0	13.0	100.0	58.0	100.0
2010
ACT Residents	47.0	68.1	12.0	48.0	59.0	62.8
Non-ACT Residents	22.0	31.9	13.0	52.0	35.0	37.2
Total	69.0	100.0	25.0	100.0	94.0	100.0
2011
ACT Residents	32.0	66.7	12.0	60.0	44.0	64.7
Non-ACT Residents	16.0	33.3	8.0	40.0	24.0	35.3
Total	48.0	100.0	20.0	100.0	68.0	100.0
2012
ACT Residents	48.0	88.9	12.0	66.7	60.0	83.3
Non-ACT Residents	6.0	11.1	6.0	33.3	12.0	16.7
Total	54.0	100.0	18.0	100.0	72.0	100.0
2013
ACT Residents	35.0	79.5	10.0	58.8	45.0	73.8
Non-ACT Residents	9.0	20.5	7.0	41.2	16.0	26.2
Total	44.0	100.0	17.0	100.0	61.0	100.0
2014
ACT Residents	45.0	71.4	12.0	66.7	57.0	70.4
Non-ACT Residents	18.0	28.6	6.0	33.3	24.0	29.6
Total	63.0	100.0	18.0	100.0	81.0	100.0
2015
ACT Residents	33.0	70.2	13.0	76.5	46.0	71.9
Non-ACT Residents	14.0	29.8	4.0	23.5	18.0	28.1
Total	47.0	100.0	17.0	100.0	64.0	100.0
2016
ACT Residents	35.0	71.4	19.0	86.4	54.0	76.1
Non-ACT Residents	14.0	28.6	3.0	13.6	17.0	23.9
Total	49.0	100.0	22.0	100.0	71.0	100.0
2017
ACT Residents	46.0	70.8	10.0	62.5	56.0	69.1
Non-ACT Residents	19.0	29.2	6.0	37.5	25.0	30.9
Total	65.0	100.0	16.0	100.0	81.0	100.0
2018
ACT Residents	37.0	78.7	14.0	73.7	51.0	77.3
Non-ACT Residents	10.0	21.3	5.0	26.3	15.0	22.7
Total	47.0	100.0	19.0	100.0	66.0	100.0
2019
ACT Residents	32.0	76.2	10.0	83.3	42.0	77.8
Non-ACT Residents	10.0	23.8	2.0	16.7	12.0	22.2
Total	42.0	100.0	12.0	100.0	54.0	100.0
2020
ACT Residents	33.0	71.7	6.0	60.0	39.0	69.6
Non-ACT Residents	13.0	28.3	4.0	40.0	17.0	30.4
Total	46.0	100.0	10.0	100.0	56.0	100.0
Source: ACT Maternal and Perinatal Data Collection and ACT Perinatal Death Data Collection.

Appendix E - ACT Perinatal Death Form

The ACT Perinatal Death Form used to collect information about perinatal deaths between 2016 and 2020 can be found on the ACT Perinatal Death Data Collection webpage.

Appendix F - PSANZ Perinatal Mortality Classifications

Since the last report, the PSANZ Perinatal Death Classification (PSANZ-PDC) and PSANZ Neonatal Death Classification (PSANZ-NDC) have been revised. The data prior to 2019 are classified according to PSANZ version 2.2, while data from 2019 are classified according to PSANZ version 3.1 (outlined below). For this report all perinatal deaths have been recoded retrospectively for 2016 to 2018 and the new coding system implemented from 2019 onwards, to allow for comparative data for the most recent five-year reporting period.

PSANZ Perinatal Death Classification (PSANZ-PDC) version 3.1

There are 12 high-level groups used in reporting PSANZ-PDC.

1 Congenital Anomaly

1.1 Structural anomaly
- 1.11 Nervous system
- 1.12 Cardiovascular system
- 1.13 Genitourinary system
- 1.14 Gastrointestinal system
- 1.15 Musculoskeletal
  - 1.151 Congenital diaphragmatic hernia
  - 1.152 Gastroschisis/omphalocele
- 1.16 Respiratory system (include congenital pulmonary airway malformation (CPAM))
- 1.17 Haematological
- 1.18 Multiple Congenital anomaly (no chromosomal/genetic cause or not tested)
- 1.19 Other congenital abnormality
  - 1.192 Idiopathic hydrops fetalis
  - 1.193 Fetal tumour (include sacro‐coccygealteratoma)
  - 1.198 Other specified
  - 1.199 Congenital anomaly, unspecified
1.2 Chromosomal anomaly
- 1.21 Down syndrome (trisomy 21)
- 1.22 Edward syndrome and Patau syndrome (trisomy 18, trisomy 13)
- 1.23 Other trisomies and partial trisomies of the autosomes, not elsewhere classified (includes pathogenic duplications, unbalanced translocations and insertions)
- 1.24 Monosomies and deletions from the autosomes, not elsewhere classified (includes pathogenic deletions e.g. 22q11.2 deletion syndrome (diGeorge syndrome), Wolff‐Hirschorn syndrome, Cri‐du‐chat syndrom
- 1.25 Turner syndrome (monosomy X)
- 1.26 Other sex chromosome abnormalities (e.g. Klinefelter syndrome)
- 1.28 Other chromosomal abnormalities, not elsewhere specified (includes Fragile X syndrome, imprinting syndromes, triploidy)
- 1.29 Unspecified
1.3 Genetic anomaly
- 1.31 Genetic condition, specified (e.g. Tay‐Sachs disease; includes inborn errors of metabolism)
- 1.32 Syndrome/association with demonstrated chromosomal/gene anomaly.
- 1.39 Genetic condition, unspecified

2 Perinatal infection

2.1 Bacterial
- 2.11 Group B Streptococcus
- 2.12 E coli
- 2.13 Listeria monocytogenes
- 2.14 Spirochaetal e.g. Syphilis
- 2.18 Other bacterial
- 2.19 Unspecified bacterial
2.2 Viral
- 2.21 Cytomegalovirus
- 2.22 Parvovirus
- 2.23 Herpes simplex virus
- 2.24 Rubella virus
- 2.25 Zika virus
- 2.28 Other viral
- 2.29 Unspecified viral
2.3 Protozoal e.g. Toxoplasma
2.5 Fungal
2.8 Other specified organism
2.9 Other unspecified organism

3 Hypertension

3.1 Chronic hypertension: essential
3.2 Chronic hypertension: secondary, e.g. renal disease
3.3 Chronic hypertension: unspecified
3.4 Gestational hypertension
3.5 Pre‐eclampsia
3.6 Pre‐eclampsia superimposed on chronic hypertension
3.9 Unspecified hypertension

4 Antepartum haemorrhage (APH)

4.1 Placental abruption
4.2 Placenta praevia
4.3 Vasa praevia
4.9 APH of undetermined origin

5 Maternal Conditions

5.1 Termination of pregnancy for maternal psychosocial indications
5.2 Diabetes
- 5.21 Gestational diabetes
- 5.22 Pre‐existing diabetes
5.3 Maternal injury
- 5.31 Accidental
- 5.32 Non‐accidental
5.4 Maternal sepsis
5.5 Antiphospholipid syndrome
5.6 Obstetric cholestasis
5.8 Other specified maternal conditions
- 5.81 Maternal suicide
- 5.88 Other specified maternal medical or surgical conditions

6 Complications of multiple pregnancy

6.1 Monochorionic twins
- 6.11 Twin to twin transfusion syndrome (TTTS)
- 6.12 Selective Fetal Growth Restriction (FGR) (i.e.affecting only one twin)
- 6.13 Monoamniotic twins (including cord entanglement)
- 6.18 Other
- 6.19 Unknown or unspecified
6.2 Dichorionic twins
- 6.21 Early fetal death in a multiple pregnancy (<20 weeks gestation)
- 6.22 Selective FGR
- 6.23 Other
- 6.29 Unknown or unspecified
6.3 Complications of higher order multiples (3 or more foetuses)
- 6.31 Twin to twin transfusion syndrome (TTTS)
- 6.32 Selective Fetal Growth Restriction (FGR)
- 6.33 Monoamniotic multiples (including cord entanglement)
- 6.34 Early fetal death in a multiple pregnancy (<20 weeks gestation)
- 6.38 Other
- 6.39 Unknown or unspecified
6.4 Complications where chorionicity is unknown
6.8 Other
6.9 Unspecified

7 Specific perinatal conditions

7.1 Fetomaternal haemorrhage
7.2 Antepartum cord or fetal vessel complications (excludes monochorionic twins or triplets)
- 7.21 Cord vessel haemorrhage
- 7.22 Cord occlusion (True knot with evidence of occlusion or other)
- 7.28 Other cord complications
- 7.29 Unspecified cord complications
7.3 Uterine/cervical abnormalities
- 7.31 Developmental anatomical abnormalities (e.g. bicornuate uterus)
- 7.38 Other
- 7.39 Unspecified
7.4 Alloimmune disease
- 7.41 Rhesus isoimmunisation
- 7.42 Other red cell antibody
- 7.43 Alloimmune thrombocytopenia
- 7.48 Other
- 7.49 Unspecified
7.5 Fetal antenatal intracranial injury
- 7.51 Subdural haematoma
- 7.52 Fetal antenatal ischaemic brain injury
- 7.53 Fetal antenatal haemorrhagic brain injury
7.6 Other specific perinatal conditions
- 7.61 Complications of prenatal diagnostic or therapeutic procedures
  - 7.611 Complications of prenatal diagnostic procedures (e.g. amniocentesis, chorionic villus sampling,) (e.g. rupture of membranes after amniocentesis)
  - 7.612 Complications of fetal ultrasound guided needle interventions (e.g.FBS/fetal transfusion, thoracocentesis, vesicocentesis, fetal cardiac valvoplasty, division of amniotic bands, fetal skin biopsy, unipolar/bipolar diathermy, RFA procedures)
  - 7.613 Complications of fetal shunt interventions (e.g. pleuroamniotic shunt, vesicoamniotic shunt)
  - 7.614 Complications of minimally invasive fetoscopic interventions (e.g. fetoscopic laser surgery for TTTS, FETO for CDH, laser ablation of posterior urethral valves)
  - 7.615 Complications of open maternal fetal surgery (e.g. open maternal fetal surgery for spina bifida)
  - 7.618 Other
- 7.62 Termination of pregnancy for suspected but unconfirmed congenital anomaly.
- 7.63 Amniotic band
- 7.68 Other
7.9 Unspecified

8 Hypoxic peripartum death

8.1 With intrapartum complications (sentinel events)
- 8.11 Uterine rupture
- 8.12 Cord prolapse
- 8.13 Shoulder dystocia
- 8.14 Complications of breech presentation
- 8.15 Birth trauma
- 8.16 Intrapartum haemorrhage
- 8.18 Other
8.2 Evidence of significant fetal compromise (excluding other complications)
8.3 No intrapartum complications recognised and no evidence of significant compromise identified.
8.9 Unspecified hypoxic peripartum death

9. Placental dysfunction or causative placental pathology

9.1 Maternal vascular malperfusion
9.2 Fetal vascular malperfusion
9.3 High grade villitis of unknown etiology (VUE)
9.4 Massive perivillous fibrin deposition/maternal floor infarction
9.5 Severe chronic intervillositis (Histiocytic intervillositis)
9.6 Placental hypoplasia
9.7 No causal placental pathology demonstrated, with antenatal evidence of poor placental function identified (such as abnormal umbilical artery Doppler)
9.8 Placental pathological examination was not performed, with antenatal evidence of poor placental function identified (such as abnormal umbilical artery Doppler)
9.9 Other placental pathology (e.g. multiple pathologies with evidence of loss of placental function leading to death

10 Spontaneouse preterm labour or rupture of membranes (ROM) (<37 weeks gestation)

10.1 Spontaneous preterm
- 10.11 With histological chorioamnionitis
- 10.12 Without histological chorioamnionitis
- 10.13 With clinical evidence of chorioamnionitis, no examinationof placenta
- 10.17 No clinical signs of chorioamnionitis, no examination of placenta
- 10.19 Unspecified or not known whether placenta examined
10.2 Spontaneous preterm preceded by premature cervical shortening

11 Unexplained antepartum fetal death

11.1 Unexplained antepartum fetal death despite full investigation
11.2 Unclassifiable antepartum fetal death with incomplete investigation
11.3 Unclassifiable antepartum fetal death due to unknown level of investigation

12 Neonatal death without obstetric antecedent

12.1 Neonatal death with no obstetric antecedent factors despite full investigation
12.2 Neonatal death unclassifiable as to obstetric antecedent with incomplete investigation
12.3 Neonatal death unclassifiable as to obstetric antecedent due to unknown level of investigation

PSANZ Perinatal Death Classification (PSANZ-NDC) version 3.1

There are seven high-level groups used in reporting PSANZ-NDC.

1 Congenital anomaly (Refer to PDC)

2 Periviable infants (typically <24 weeks)

2.1 Not resuscitated (including infants where there is an antenatal plan for no resuscitation at birth or in the circumstance of re‐directed care)
2.2 Unsuccessful resuscitation
2.9 Unspecified or not known whether resuscitation attempted

3 Cardio‐respiratory disorders

3.1 Hyaline membrane disease / Respiratory distress syndrome (RDS)
3.2 Meconium aspiration syndrome
3.3 Primary persistent pulmonary hypertension
3.4 Pulmonary hypoplasia
3.5 Pulmonary haemorrhage
3.6 Air leak syndromes
- 3.61 Pneumothorax
- 3.62 Pulmonary interstitial emphysema
- 3.63 Other
3.7 Patent ductus arteriosus
3.8 Chronic neonatal lung disease (typically, bronchopulmonary dysplasia)
3.9 Other
- 3.91 Neonatal anaemia/hypovolaemia

4 Neonatal infection

4.1 Congenital/Perinatal bacterial infection (early onset<48 hrs)
- 4.11 Blood stream infection/septicaemia
  - 4.111 Positive culture of a pathogen
  - 4.112 Clinical signs of sepsis + ancillary evidence but culture negative
- 4.12 Bacterial meningitis
- 4.13 Bacterial pneumonia
- 4.15 Multiple site bacterial infection
- 4.18 Other congenital bacterial infection e.g.gastroenteritis, osteomyelitis, cerebral abscess
- 4.19 Unspecified congenital infection
4.2 Congenital/Perinatal viral infection
4.3 Congenital fungal, protozoan, parasitic infection
4.4 Acquired bacterial infection (late onset>48hrs)
- 4.41 Blood stream infection/septicaemia
  - 4.411 Positive culture of a pathogen
  - 4.412 Clinical signs of sepsis + ancillary evidence but culture negative
- 4.42 Bacterial meningitis
- 4.43 Bacterial pneumonia
- 4.48 Other acquired bacterial infection e.g. gastroenteritis, osteomyelitis
- 4.49 Unspecified acquired infection
4.5 Acquired viral infection
4.6 Acquired fungal, protozoan, parasitic infection

5 Neurological

5.1 Hypoxic ischaemic encephalopathy/Perinatal asphyxia
5.2 Intracranial haemorrhage
- 5.21 Intraventricular Haemorrhage
- 5.22 Subgaleal Haemorrhage
- 5.23 Subarachnoid Haemorrhage
- 5.24 Subdural Haemorrhage
- 5.28 Other Intracranial Haemorrhage
5.3 Post haemorrhagic hydrocephalus
5.4 Periventricular leukomalacia
5.8 Other

6 Gastrointestinal

6.1 Necrotising enterocolitis (NEC)
6.2 Short gut syndrome
6.3 Gastric or intestinal perforation (excluding NEC)
6.4 Gastrointestinal haemorrhage
6.8 Other

7 Other

7.1 Sudden unexpected death in infancy (SUDI)
- 7.11 Sudden Infant Death Syndrome (SIDS)
  - 7.112 SIDS Category IA: Classic features of SIDS present and completely documented.
  - 7.113 SIDS Category IB: Classic features of SIDS present but incompletely documented.
  - 7.114 SIDS Category II: Infant deaths that meet category I except for one or more features.
- 7.12 Unclassified Sudden Infant Death in the neonatal period
  - 7.121 Bed sharing
  - 7.122 Not bed sharing
- 7.19 Unknown/Undetermined
7.2 Multisystem failure
- 7.21 Secondary to intrauterine growth restriction
- 7.28 Other specified
- 7.29 Unspecified/undetermined primary cause or trigger event
7.3 Trauma
- 7.31 Accidental
- 7.32 Non accidental
- 7.39 Unspecified
7.4 Treatment complications
- 7.41 Surgical
- 7.42 Medical
7.5 Unsuccessful resuscitation in infants of 28 weeks gestation or more without an obvious sentinel event

Appendix G - Supplementary tables

Table 30: Fetal, neonatal and perinatal mortality rates (per 1,000 births) for the ACT using ACT and WHO definition, ACT residents, 2016–2020
Year	ACT Definition^a		WHO Definition^b
Year	Rate	95% CI^c	Rate	95% CI^c
Fetal deaths^d
2016	6.8	(5.6⁠–⁠8.1)	3.0	(2.2⁠–⁠3.9)
2017	7.3	(6.0⁠–⁠8.6)	2.7	(1.9⁠–⁠3.5)
2018	7.2	(5.9⁠–⁠8.5)	2.8	(2.0⁠–⁠3.6)
2019	6.5	(5.2⁠–⁠7.7)	2.4	(1.7⁠–⁠3.2)
2020	6.1	(4.6⁠–⁠7.6)	2.7	(1.7⁠–⁠3.7)
2016⁠–⁠2020	6.8	(5.8⁠–⁠7.8)	2.7	(2.1⁠–⁠3.3)
Neonatal deaths^e
2016	2.6	(1.8⁠–⁠3.4)	2.6	(1.8⁠–⁠3.4)
2017	2.7	(1.9⁠–⁠3.5)	2.7	(1.9⁠–⁠3.5)
2018	2.1	(1.4⁠–⁠2.9)	2.1	(1.4⁠–⁠2.9)
2019	1.9	(1.2⁠–⁠2.6)	1.9	(1.2⁠–⁠2.6)
2020	1.5	(0.8⁠–⁠2.3)	1.5	(0.8⁠–⁠2.3)
2016⁠–⁠2020	2.2	(1.6⁠–⁠2.8)	2.2	(1.6⁠–⁠2.8)
Perinatal deaths^d
2016	9.4	(7.9⁠–⁠10.9)	5.6	(4.5⁠–⁠6.8)
2017	9.9	(8.4⁠–⁠11.5)	5.3	(4.2⁠–⁠6.5)
2018	9.4	(7.8⁠–⁠10.9)	4.9	(3.8⁠–⁠6.0)
2019	8.4	(7.0⁠–⁠9.8)	4.3	(3.3⁠–⁠5.4)
2020	7.6	(6.0⁠–⁠9.3)	4.3	(3.0⁠–⁠5.5)
2016⁠–⁠2020	9.0	(7.9⁠–⁠10.2)	4.9	(4.1⁠–⁠5.7)
Source: ACT Maternal and Perinatal Data Collection.
Note: ACT rates are based on three-year rolling averages.
^a The ACT's definitions of perinatal death are based on the AIHW's definition of perinatal death, which includes all fetal deaths occuring at or after 20 weeks' gestation or where birthweight is 400 grams or more.
^b The WHO recommends that, for international comparisons, fetal deaths be defined as those occuring at or after 28 weeks' gestation or where the birthweight is 1,000 grams or more.
^c CI = confidence interval.
^d Rate per 1,000 births.
^e Rate per 1,000 live births.

Table 31: Number and percentage perinatal deaths by cause of death (PSANZ-PDC) and birthweight (grams), ACT residents, 2016–2020
PSANZ-PDC^a	Less than 1,000 grams		1,000⁠–⁠2,499 grams		2,500 or more grams		Not stated		Total
PSANZ-PDC^a	No.	%^b	No.	%^b	No.	%^b	No.	%	No.	%^b
Congenital anomaly	61	36.7	11	33.3	4	9.8	0	0.0	76	31.4
Perinatal infection	20	12.0	2	6.1	2	4.9	0	0.0	24	9.9
Hypertension	4	2.4	1	3.0	0	0.0	0	0.0	5	2.1
Antepartum haemorrhage	18	10.8	2	6.1	4	9.8	0	0.0	24	9.9
Maternal conditions	4	2.4	2	6.1	0	0.0	0	0.0	6	2.5
Complications of multiple pregnancy	8	4.8	0	0.0	0	0.0	1	50.0	9	3.7
Specific perinatal conditions	3	1.8	1	3.0	6	14.6	1	50.0	11	4.5
Hypoxic peripartum death	0	0.0	2	6.1	7	17.1	0	0.0	9	3.7
Placental dysfunction or causative placental pathology	18	10.8	5	15.2	7	17.1	0	0.0	30	12.4
Spontaneous preterm labour or rupture of membranes (<37 weeks gestation)	16	9.6	3	9.1	0	0.0	0	0.0	19	7.9
Unexplained antepartum fetal death	13	7.8	3	9.1	10	24.4	0	0.0	26	10.7
Neonatal death without obstetric antecedent	0	0.0	0	0.0	1	2.4	0	0.0	1	0.4
Not stated	1	0.6	1	3.0	0	0.0	0	0.0	2	0.8
Total deaths	166	100.0	33	100.0	41	100.0	2	100.0	242	100.0
Total births^c,d	220	0.8	1,576	5.9	25,024	93.3	3	0.0	26,823	100.0
Rate per 1,000 births	754.5	--	20.9	--	1.6	--	n.p	--	9.0	--
Source: ACT Maternal and Perinatal Data Collection and ACT Perinatal Death Data Collection.
n.p. = not published. Not calculated due to small numbers.
^a Perinatal Society of Australia and New Zealand — Perinatal Death Classification.
^b Due to the rounding of percentages totals may not equal 100%.
^c Total births includes live births and fetal deaths.
^d Percentage values in this row give the percentage of the overall births in each group.

Table 32: Neonatal deaths by birthweight and days survived, ACT residents, 2016–2020
Birthweight (grams)	1 day or less		2⁠–⁠3 days		4⁠–⁠7 days		8⁠–⁠14 days		15⁠–⁠21 days		22⁠–⁠28 days		Total
Birthweight (grams)	No.	%^a	No.	%	No.	%	No.	%	No.	%	No.	%	No.	%
Less than 1,000	37	86.0	0	0.0	2	40.0	2	100.0	0	0.0	0	0.0	41	69.5
1,000⁠–⁠2,499	1	2.3	1	20.0	2	40.0	0	0.0	1	33.3	1	100.0	6	10.2
2,500 or more	5	11.6	3	60.0	1	20.0	0	0.0	2	66.7	0	0.0	11	18.6
Not stated	0	0.0	1	20.0	0	0.0	0	0.0	0	0.0	0	0.0	1	1.7
Total	43	100.0	5	100.0	5	100.0	2	100.0	3	100.0	1	100.0	59	100.0
Source: ACT Maternal and Perinatal Data Collection.
^a Due to the rounding of percentages totals may not equal 100%.

Glossary

ABORIGINAL AND TORRES STRAIT ISLANDER IDENTIFICATION (STATUS) refers to whether or not a person is of Aboriginal and/or Torres Strait Islander descent who self identifies as an Aboriginal and/or Torres Strait Islander.

ANOMALY is a deviation from what is regarded as normal. An example would be a congenital malformation or congenital anomaly.

ANTENATAL refers to the time period of pregnancy before birth.

ANTEPARTUM FETAL DEATH refers to a fetal death occurring before the onset of labour.

BIRTH refers to the birth or delivery of a child.

BODY MASS INDEX Body mass index (BMI) is a ratio of height and weight and is calculated by dividing a person’s weight in kilograms by the square of their height in metres (kg/m2). In pregnancy, a BMI of 25 to 29.9 is defined as overweight and a BMI of 30 or more is defined as obesity. A BMI of less than 18.5 is defined as underweight in pregnancy.

BIRTH STATUS is the condition of the baby immediately after birth. The status may be a live birth or stillbirth (fetal death).

BIRTHWEIGHT is the first weight of the baby (stillborn or live born) obtained after birth. It is usually measured to the nearest five grams.

CONFIDENCE INTERVAL (95% CI) is a computed interval with a given probability (for example, 95%) that a true value of a variable such as a rate, mean or proportion, is contained between the low and high values. When the confidence intervals of two estimated values do not overlap, the values are statistically significantly different.

CONGENITAL ANOMALIES are the structural or anatomical abnormalities that are present at or existing from the time of birth, usually resulting from abnormal development in the first trimester of pregnancy. These were previously reported as birth defects, congenital anomalies or malformations.

CRUDE DEATH RATE is the number of deaths per 1,000 population (unless otherwise stipulated) in a given year (ABS definition).

FETAL DEATH or stillbirth, refers to death prior to the complete expulsion or extraction from its mother of a product of conception of 20 or more completed weeks of gestation or of 400g or more of birthweight; the death is indicated by the fact that after separation the fetus does not breathe or show any other evidence of life, such as the beating of the heart, pulsation of the umbilical cord, or definite movement of voluntary muscles.

GESTATION is the period of development of a baby from the time of conception (fertilisation of the ovum) to birth.

GESTATIONAL AGE is the duration of the pregnancy in completed weeks from the first day of the last normal menstrual period. This is estimated from clinical assessment (including estimates from ultrasound examinations) when accurate information on the last menstrual period is not available or not consistent with the clinical assessment of gestational age.

GRAVIDITY refers to a pregnancy; the state of being pregnant, and is unrelated to the outcome.

ICD-9 (or ICD-9-CM) refers to the International Classification of Diseases Ninth Revision as developed by the World Health Organisation. The CM stands for Country Modification.

ICD-10 (or ICD-10-AM) refers to the International Classification of Diseases Tenth Revision as developed by the World Health Organisation. The AM stands for Australian Modification. In the ACT and most other states in Australia, ICD-10-AM codes were introduced in July 1998 to code hospital (morbidity) inpatient data.

INTERRUPTION OF PREGNANCY refers to a medical termination of pregnancy most commonly for multiple pregnancies or congenital anomalies.

INTRAPARTUM FETAL DEATH refers to a fetal death occurring during labour.

LIVE BIRTH refers, in this publication, to the complete expulsion or extraction from its mother of a baby of 20 completed weeks gestation or more or at least 400 grams in birthweight or who after being born breathes or shows any other evidence of life, such as a heartbeat. The WHO defines live birth differently, as the complete expulsion or extraction from its mother of a product of conception, irrespective of the duration of the pregnancy, which, after such separation, breathes or shows any other evidence of life, such as beating of heart, pulsation of the umbilical cord, or definite movement of voluntary muscles, whether or not the umbilical cord has been cut or the placenta attached, each product of such a birth is considered live born.

LATE TERMINATIONS are terminations of pregnancy at 20 weeks gestation or more.

MISCARRIAGE is a common term used to describe pregnancy loss occurring at less than 20 weeks gestation.

MORBIDITY is a diseased state or the ratio of sick to well in the community.

MORTALITY is a fatal outcome or the relative number of deaths (death rate) in a given population at a given time.

MULTIGRAVIDA refers to a woman who has been pregnant more than once.

MULTIPARA refers to pregnant women who have had at least one previous pregnancy resulting in a live birth or stillbirth.

MULTIPLE BIRTH refers to a pregnancy resulting in more than one birth. For example twins, triplets etc.

NEONATAL DEATH is the death of a live born baby within 28 days of birth.

NEONATAL MORBIDITY refers to any condition or disease of the baby diagnosed within 28 days of birth.

PARITY refers to the total number of previous pregnancies experienced by the woman that have resulted in a live birth or a stillbirth. The definition of parity has been changed since the last publication to align with the revised National Perinatal Data Development Committee’s accepted definition.

PERINATAL refers to the period from 20 weeks gestation to within 28 days after birth.

PERINATAL DEATH refers to a stillbirth (fetal death) or a neonatal death.

PLURALITY refers to the number of fetuses or babies from a pregnancy. On this basis a pregnancy is classified as single or multiple.

POST NEONATAL DEATH refers to the death of a baby after 28 completed days and before 365 completed days.

PREGNANCY LOSS refers to a loss of a pregnancy prior to 20 weeks gestation.

PRETERM BIRTH refers to a birth before 36 completed weeks of gestation. Extremely preterm refers to births between 20 and 27 weeks gestation; moderately preterm refers to births between 28 and 31 weeks gestation; and late preterm refers to births between 32 and 36 weeks gestation.

PRIMIGRAVIDA refers to a woman pregnant for the first time.

PRIMIPARA refers to a pregnant woman who has had no previous pregnancy resulting in a live birth or stillbirth.

PROLONGED RUPTURE OF MEMBRANES refers to the spontaneous rupture of membranes for at least 18 hours prior to the onset of regular contractions with cervical dilation.

RESUSCITATION OF A BABY refers to active measures taken shortly after birth to assist the baby’s ventilation and heartbeat, or to treat depressed respiratory effort and to correct metabolic disturbances.

SEPARATION (from hospital) refers to when a patient is discharged from hospital, transferred to another hospital or other health care accommodation, or dies in hospital following formal admission (ABS definition).

SINGLETON BIRTH refers to a pregnancy resulting in one birth.

STATISTICAL SIGNIFICANCE is used to quantify whether a result is due to the relationship assessed within an analysis or due to random chance. When a comparison is statistically significant it means that the difference is not due to chance.

STILLBIRTH see ‘Fetal death’.

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References

Lequertier B, McLean MA, Kildea S, King S, Keedle H, Gao Y, et al. Perinatal Depression in Australian Women during the COVID-19 Pandemic: The Birth in the Time of COVID-19 (BITTOC) Study. International Journal of Environmental Research and Public Health [Internet]. 2022 Apr 21;19(9):5062. Available from: http://dx.doi.org/10.3390/ijerph19095062

Rolnik DL, Matheson A, Liu Y, Chu S, Mcgannon C, Mulcahy B, et al. Impact of COVID -19 pandemic restrictions on pregnancy duration and outcome in Melbourne, Australia. Ultrasound in Obstetrics & Gynecology [Internet]. 2021 Nov;58(5):677–87. Available from: http://dx.doi.org/10.1002/uog.23743

Homer CSE, Leisher SH, Aggarwal N, Akuze J, Babona D, Blencowe H, et al. Counting stillbirths and COVID 19 — there has never been a more urgent time. The Lancet Global Health [Internet]. 2021 Jan;9(1):e10–1. Available from: http://dx.doi.org/10.1016/S2214-109X(20)30456-3

Hui L, Marzan MB, Potenza S, Rolnik DL, Pritchard N, Said JM, et al. Increase in preterm stillbirths in association with reduction in iatrogenic preterm births during COVID-19 lockdown in Australia: a multicenter cohort study. American Journal of Obstetrics and Gynecology [Internet]. 2022 Sep;227(3):491.e1–17. Available from: http://dx.doi.org/10.1016/j.ajog.2022.04.022

ACT Government. ACT Government Response to the Standing Committee on Health, Ageing and Community Services Report 10 [Internet]. Canberra: ACT Government; 2020. Available from: https://www.parliament.act.gov.au/__data/assets/pdf_file/0011/1614278/9th-HACS-10-Inquiry-into-Maternity-Services-in-the-ACT-tabled-13-August-2020.PDF

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Perinatal mortality in the ACT 2016-2020

Preface

Executive Summary

Key findings

Perinatal deaths in the ACT

Maternal and baby characteristics

Causes of perinatal death

Post-mortem investigation of perinatal deaths

Recommendations

Introduction

Background

Maternity services in the ACT and the Australian Capital Region

Aims of this report

Perinatal deaths in the ACT

All perinatal deaths in 2016–2020

Perinatal mortality rates in 2016–2020

Perinatal mortality rates adjusted for late terminations and birthweight less than 400 grams

Perinatal deaths in the ACT compared to Australia

Comparison of ACT perinatal mortality rates with national data

Comparison of causes of perinatal death in the ACT with national data

Perinatal deaths by maternal characteristics

Maternal age

Assisted Reproductive Technology

Smoking status during pregnancy

Body mass index (BMI) of mother

Aboriginal and Torres Strait Islander mothers

Perinatal deaths by baby characteristics

Gestational age and birthweight

Gestational age

Birthweight

Fetal deaths by birthweight and gestational age

Birthweight percentile

Plurality

Aboriginal and Torres Strait Islander status of the baby

Place and type of perinatal death

Causes of perinatal deaths in the ACT

Causes of perinatal deaths

Changes in antecedent causes of perinatal death

Cause of perinatal death by gestational age

Comparison of causes of perinatal death in ACT residents compared to non-ACT residents

Causes of fetal deaths

Causes of neonatal deaths

Changes in antecedent causes of neonatal death

Cause of neonatal death by gestational age and birthweight

Post-mortem investigation of perinatal deaths

Autopsy

Placental examination

Conclusion

Appendices

Appendix A - Terms of Reference

Appendix B - Methods

Clinical classification

Data collection

Statistical analysis

Definitions

Appendix C - Data specifications

Appendix D - Summary of perinatal deaths

Appendix E - ACT Perinatal Death Form

Appendix F - PSANZ Perinatal Mortality Classifications

PSANZ Perinatal Death Classification (PSANZ-PDC) version 3.1

PSANZ Perinatal Death Classification (PSANZ-NDC) version 3.1

Appendix G - Supplementary tables

Glossary

References

Acknowledgement of Country

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