Stillbirth program gives hope to grieving mums after stillbirths

A grieving mother, who lost her first child to stillbirth, has found solace in a new free online help program designed to give tips on how to cope after losing a baby.

Lilly Castor with her husband and daughter Trixie at home. Mrs Castor said the program would help other mothers to cope with stillbirth. Pictures: Contributed

A mum who lost her first child to stillbirth two years ago has praised a new free online program for grieving families in rural communities.

Lilly Castor, 32, from Orange in the Central Tablelands region of New South Wales, said the University of Queensland program, Living with Loss, gave distraught mums simple coping strategies.

Based at Brisbane’s Mater Hospital, the University of Queensland helps mums whose babies have died to deal with difficult thought patterns and provides tips on facing challenging situations such as returning to work, birthdays, or anniversaries.

Mrs Castor, who has since had a baby girl, Trixie, now 10 months old, said the online program developed by the National Health and Medical Research Council Centre of Research Excellence in Stillbirth had “identified a gap in healthcare”.

Mrs Castor and her husband with baby Vincent.

“Our district has a high peri-natal mortality rate, and this service is needed,” she said.

“Whether you experienced your loss one year ago or 10 years ago, this program is beneficial.

“It would have been really helpful for me in those early months after losing Vincent, when my grief was really dark and challenging.”

In Australia, about six babies are stillborn each day, affecting more than 3000 mothers across the country each year, with the cause of one in three stillbirths unknown.

Postdoctoral researcher Dr Siobhan Loughnan, from the neonatal death research program, said an economic evaluation found that if the Living With Loss program had been available to the 3000 families affected by loss in 2021, the public health system could have saved more than $3.4 million.

researcher Dr Siobhan Loughnan, from the neonatal death research program

“The death of a baby during pregnancy or soon after birth is devastating — but it is a reality faced by 3000 families a year,” Dr Loughnan said.

“The program is designed to address a gap in peri-natal bereavement support for women in isolated communities. It provides a range of options of support for families after losing a baby and is delivered in a flexible, self-guided digital format.

“Grief, distress, and other multifaceted emotions are natural after pregnancy and baby loss, and the quality of care that families receive is a major contributor to immediate and long-term wellbeing.

“Our evaluation showed that parents reported earlier reductions in feelings of distress after completing the program, compared to those who did not access the program, and that the program was helpful and valuable to parents in navigating their own experience of grief and loss,” Dr Loughnan said.

The program was created with a team of bereaved parents, parent support and advocacy organisations, health professionals, and researchers who collectively provided specialist knowledge of peri-natal loss care and support and lived experience of peri-natal loss.

Living With Loss is available nationally to all impacted by pregnancy and baby loss and can be accessed via the Stillbirth CRE’s Care Around Loss page.

Originally published as Stillbirth program gives hope to grieving mums after stillbirths