Authors: Vicki Flenady, The University of Queensland; Aleena Wojcieszek, The University of Queensland; David Ellwood, Griffith University; Fran Boyle, The University of Queensland; Jonathan Morris, University of Sydney, and Philippa Middleton, South Australian Health & Medical Research Institute
The death of an unborn baby is a tragedy that deeply affects families, health systems and wider society. Parents continue to grieve for their baby for years. Their functioning and sense of self can be profoundly changed.
Here are five ways we can help parents cope with the tragedy of stillbirth.
1. Acknowledge parents’ loss
Because others are uncomfortable with the topic, many parents feel unable to talk about their loss. And well-intentioned comments, such as “it was meant to be”, “these things happen” and “you can always have another baby”, minimise parents’ loss and may only leave parents feeling more isolated in their grief.
Listening to parents and acknowledging their stillborn baby as a member of their family, and acknowledging their grief, is vital to improve care and reduce the impacts of this devastating loss.
2. Offer ongoing support to parents
Throughout the world, 4.2 million women are estimated to be living with depressive symptoms after stillbirth. Many suffer in silence due to the taboo surrounding stillbirth.
Respectful and supportive care is essential in hospital. But it’s often when parents arrive home without their baby that the reality hits and the long and often lonely journey of grieving begins.
Yet less than half of parents in high-income countries receive a follow-up visit or phone call from their hospital. And only around half receive information about who to contact for support after they leave hospital. These figures are even lower for parents in developing regions.
3. Raise public awareness
Until fairly recently, stillbirth has been a neglected issue, largely absent from the global health agenda. We need to improve public awareness of stillbirth to make sure our social communities and workplaces are equipped to provide the kind of support and recognition parents need.
Women and their partners should also be equipped with knowledge about how to reduce their risk of having a stillborn child.
Hearing the voices of bereaved parents in the public will help break down taboos. For public health campaigns to be effective, target populations need to be aware of the health threat as a first step, followed by messages that move the target audiences to action.
One of the most successful public health campaigns are the back to sleep campaigns to reduce sudden infant death syndrome (SIDS). The simple, universally targeted messages reached new and receptive parents.
If campaigns are not universally agreed to by all stakeholders, a plethora of competing campaigns may arise. This will confuse the target population, diminishing the campaigns’ value or, worse, they may cause harm.
Organisations such as Stillbirth Foundation Australia, Red Nose, Sands, Still Aware and Bears of Hope have a key role to play in supporting parents and raising public awareness. They are collaborating with the Centre of Research Excellence in Stillbirth to develop a unified campaign.
4. Investigate each stillbirth
A critical analysis of every baby’s death can identify contributing factors to help explain the event and prevent future deaths. Such investigations can not only determine the cause of death, but can also unearth systems issues such as a failure to implement evidence-based clinical practice guidelines.
Substandard care plays a role in 20-30% of stillbirths. These cases often show the need to improve detection of women at increased risk during pregnancy.
New Zealand and the UK have national systems to ensure comprehensive review of every stillbirth and neonatal death. Australia’s federal government, through the NHMRC, has funded the Centre of Research Excellence in Stillbirth, to reduce the stillbirth rate and improve care after stillbirth for affected families, including in subsequent pregnancies. This is a step in the right direction.
The Perinatal Society of Australia and New Zealand in partnership with the stillbirth CRE sets out detailed recommendations for investigation and audit of these deaths, but the guidelines are yet to be fully implemented across Australia. Many stillbirths are not fully evaluated as to causes and contributing factors.
Training of health-care professionals in this area has begun, and the stillbirth research centre will work with maternity hospitals to expand this training.
5. Give parents answers
Parents want to know why their baby died. Finding a cause of stillbirth, and the factors that led to that cause, helps parents begin to make sense of their loss.
Most parents will conceive again, and understanding what caused their baby’s death means having a better idea of the likelihood of the cause recurring in future pregnancies.
Specific interventions, such as low-dose aspirin, early scheduled birth, or treatment for anxiety and depression, may reduce the risk of recurrence and improve psychological outcomes.
In high-income countries, around 30% of stillbirths are classified as “unexplained”, though many of these deaths are not comprehensively investigated. By increasing the proportion of stillbirths that are appropriately investigated and improving diagnostic techniques, it may be possible to halve this figure.
Problems with the structure and function of the placenta are often linked to stillbirth.
However, many stillbirths occur unexpectedly in an otherwise healthy mother and baby, and remain unexplained after a full investigation. So, research is needed to better understand the mechanisms for these unexplained stillbirths.
Victoria Bowring, general manager of Stillbirth Foundation Australia, contributed to this article.
Vicki Flenady, Professor, Mater Research Institute; Director, Centre of Research Excellence in Stillbirth, The University of Queensland; Aleena Wojcieszek, Research Associate, Centre of Research Excellence in Stillbirth, Mater Research Institute, The University of Queensland; David Ellwood, Professor of Obstetrics & Gynaecology, Griffith University; Fran Boyle, Lead, Care after Stillbirth Program, Centre of Research Excellence in Stillbirth, The University of Queensland; Jonathan Morris, Professor of Obstetrics and Gynaecology and Director, Kolling Institute of Medical Research Obstetrics, Gynaecology and Neonatology, Northern Clinical School, University of Sydney, and Philippa Middleton, Associate Professor, South Australian Health & Medical Research Institute