Millions of women around the world are estimated to be living with depressive symptoms after stillbirth. from www.shutterstock.com
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
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.
When parents arrive home without their baby the reality hits and the long and often lonely journey of grieving begins. from www.shutterstock.com
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.
About The Author
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
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Dr. Nikki Watkins, LMFT, was sure she was done having children. She and her husband, Greg, were in their forties and had three daughters. But Nikki felt God’s encouragement to have another child, and when her six-year-old suggested that God might want the couple to have a baby, Nikki knew it was a sign. Greg prayed about the matter and agreed that God wanted them to have another baby, and Nikki’s pregnancy commenced.
Greg and Nikki learned that their unborn daughter, Riley Elizabeth, had a heart defect, but late in the pregnancy, the parents visited a pediatric cardiologist who told them she wouldn’t need surgery. But the very next day, they received the worst news of their lives: Riley’s heart had stopped beating.
In the days and months ahead, Nikki plunged into grief—and worse. She experienced severe depression, anxiety, obsessive thoughts, and substance abuse. She couldn’t trust God anymore, not after what he had let her go through.
But she loved Greg, and she didn’t want to lose him. As alone as she felt, she reached out to others and didn’t let go of her loved ones. Their support provided an environment for her healing—and her return to God.
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Happily married and teaching history at the University of Oxford, Sarah Williams had credentials, success, and knowledge. It took someone who would never have any of these things to teach her what it means to be human.
This extraordinary true story begins with the welcome news of a new member of the Williams family. Sarah’s husband, Paul, and their two young daughters share her excitement. But the happiness is short-lived, as a hospital scan reveals a lethal skeletal dysplasia. Birth will be fatal.
Sarah and Paul decide to carry the baby to term, a decision that shocks medical staff and Sarah’s professional colleagues. Sarah and Paul find themselves having to defend their child’s dignity and worth against incomprehension and at times open hostility. They name their daughter, Cerian, Welsh for “loved one.” Sarah writes, “Cerian is not a strong religious principle or a rule that compels me to make hard and fast ethical decisions. She is a beautiful person who is teaching me to love the vulnerable, treasure the unlovely, and face fear with dignity and hope.”
In this candid and vulnerable account, Sarah brings the reader along with her on the journey towards Cerian's birthday and her deathday. It’s rare enough to find a writer who can share such a heart-stretching personal experience without sounding sappy, but here is one who at the same time has the ability to articulate the broader cultural issues raised by Cerian’s story. In a society striving for perfection, where worth is earned, identity is constructed, children are a choice, normal is beautiful, and deformity is repulsive, Cerian’s short life raises vital questions about what we value and where we are headed as a culture.
Perfectly Human was first published in the United Kingdom as The Shaming of the Strong. This edition includes a new afterword by the author.