Removing stigma around stillbirth: ‘The time is now’

Stillbirth and infant death remain incredibly taboo subjects in Australia.
 
‘Stillbirth is extremely difficult for a community to think about, and it’s hard to talk about, because nobody wants to think about it happening to them or to somebody they know,’ Julie Kluckow, bereavement counsellor at Red Nose, a charity dedicated to reducing infant deaths, told newsGP.
 
Given the fact stillbirth remains shrouded in such silence, many Australians may be surprised to learn of its continued prevalence.
 
‘The rate of stillbirth in Australia is approximately seven per 1000 births, which equals about 2100 families each year,’ Chief Executive of the Stillbirth and Neonatal Death charity (Sands), Jackie Mead, told newsGP.
 
‘This means approximately one in every 140 women who reach 20 weeks’ gestation will have a stillborn child; and for Indigenous women and women from other disadvantaged groups, this risk is often doubled.’
 
Australians tend to find death a difficult subject to broach, and the death of a baby, doubly so – but this can create great isolation for families who are going through the grief of such an experience.
 
‘For most parents and their families, pregnancy is a happy time filled with joyful anticipation and exciting plans for the future,’ Ms Mead said.
 
‘When a baby dies, families lose their dreams for a future with their child and they experience immeasurable heartbreak, while stigma and inability of the community at large to talk about stillbirth intensifies parents’ distress and often makes them feel more isolated in their grief.’

A parliamentary report conducted last year into stillbirth research and education found this reticence to discuss the subject can also extend to healthcare professionals, which may not only present barriers to parents experiencing stillbirth, but also inhibit the communication of information that can help prevent it.
 
‘I've spoken to friends of ours who are obstetricians and asked, “Are you using the Still Aware stuff [Resources to raise awareness of stillbirth]?”’ Rachelle Martin told the parliamentary report writers last year. ‘They said, “Well, you know, it doesn't happen that often”.
 
‘That’s not the answer we want to hear. How we get past that, how we deal with bereavement, how we deal with grief, how we deal with asking for help and how we deal with taking help on board is a stigma in Australia, and I think we need to look beyond it.’
 
Advocates for stillbirth prevention and providing greater support for affected parents are determined to change this situation.
 
‘We want to see the stigma around stillbirth removed, we want these losses to be recognised by the wider Australian community, and we want people to have access to the right support, including in their workplace,’ Ms Kluckow said.
 
As part of that effort, Ms Kluckow believes GPs have a key role in stillbirth prevention.
 
‘GPs can have a huge impact on educating pregnant women about stillbirth, and therefore reducing the risk,’ she said.
 
‘GPs can help by raising awareness for reduced foetal movement and making sure patients know how to monitor their babies’ movements, and that reduced movement may be a sign their baby is unwell and in distress.
 
‘Also, patients can sleep on their side to reduce their risk from 28 weeks. Doing so helps the baby’s oxygen, as sleeping on your back puts pressure on blood flow and oxygen to the mother and the baby’s placenta.
 
‘Patients can also be encouraged to seek help and support if they think something may be wrong – our message is to never hesitate to contact your midwife or GP.’
 
Dr Wendy Burton, Chair of the RACGP Specific Interests Antenatal and Postnatal Care network, agrees all these points are important, but also acknowledges the tightrope GPs have to walk in balancing awareness-raising while preventing fear.
 
‘It’s how to do it in a sensitive and sensible way that informs and empowers without creating alarm, that’s the difficult part,’ she told newsGP earlier this year.
 
As an example, Dr Burton suggested telling pregnant women not to worry if they wake up lying on their backs, but to ‘just roll over onto their sides and go back to sleep’.
CEO of Sands, Jackie Mead, feels stigma around stillbirth has the effect of isolating bereaved parents.
 
Ms Mead highlighted that GPs have a vital role in the aftermath of stillbirth, as well.
 
‘Grief after the death of a baby is often lifelong,’ she said. ‘Parents may need ongoing support and special care for a long time, and especially during any subsequent pregnancies.’
 
Ms Kluckow highlighted that losing a child at such an early stage in their life can significantly impact the grieving process, and that parents should be allowed to acknowledge their child without pressure to ‘move on’.
 
‘Usually when family members or close friends die there are many memories of time spent together, which serve as a comfort for those who grieve for them,’ Ms Kluckow said.
 
‘When you lose a baby, there are often very few memories of time together. Parents may wish to spend time with their baby to create these memories, naming him or her and doing for their baby some of the things they may have done in life.’
 
Advocacy efforts received a significant boost earlier this year when the Federal Government announced an increase in funding and support for efforts to reduce stillbirth rates in Australia.
 
Ms Kluckow outlined some specific goals she hopes might be achieved as a result.
 
‘We hope the Government’s pledge will lead to the reduction of stillbirth through the implementation of a patient education program and a new package to reduce smoking in pregnancy; raising awareness for reduced foetal movement; the implementation of a Perinatal Mortality Review Tool; and risk assessment and surveillance for foetal growth restriction,’ she said.
 
‘The time for Australia to make reducing stillbirth a national priority is now.’
 
Ms Mead, meanwhile, hopes that the most affected stakeholders will be included in the boosted program.
 
‘We hope that the needs of bereaved parents will continue to be considered and their voices heard as part of the Government’s stillbirth action plan,’ she said.
 
There are a number of resources available to GPs for providing prenatal and antenatal care, and information that may assist in the prevention of stillbirth. 

• Guidelines for preventive activities in general practice (Red Book) ­– chapter on Preventive activities prior to pregnancy
• The national guide to a preventive health assessment for Aboriginal and Torres Strait Islander people – chapter on Antenatal care
• Sands and Red Nose Australia provide resources and information for healthcare professionals on their websites, including e-learning modules and referral advice.

Maternity care Pregnancy Prenatal and antenatal care Reproductive health Stillbirth