Dying To Know Day: Let's Talk About the Grief We Don't Always See

Trigger warning: baby loss

Death and grief are topics many of us would rather avoid. We hope they stay in the distance and when they do arrive, we often find ourselves unsure what to say, what to do or how to support the people we love.

This is one of the reasons why Dying To Know Day exists.

Held each year on August 8th, Dying to Know Day is a national initiative that encourages Australians to have open, honest conversations about death, dying and grief. Rather than focusing solely on the end of life, the campaign is about 'death literacy', helping people feel more comfortable talking about loss, understanding what support is available and preparing for conversations that every family will face at some point. By bringing these conversations into the open, we can reduce fear, lessen stigma and build more compassionate communities.

As a society, one area we have improved in over the last few decades is encouraging parents to talk about perinatal baby loss. One of the most devastating losses, and often least understood, is the loss of a baby through miscarriage or pregnancy loss, TFMR, stillbirth, neonatal death, SIDS/SUDI, illness, accident or other circumstances during infancy. For parents, the loss of a baby changes their life forever but it also profoundly affects grandparents and this aspect is not as widely discussed.

Often finding themselves navigating two devestating realities at once, grandparents grieve the death of their grandbaby alongside the heartbreak of witnessing their own child's pain, often feeling powerless to ease it. Balancing their own grief while supporting not only their bereaved child but their wider family. It's an immense task, yet little information exists to guide them through this unique experience, even if they do seek it out.

Grandparents are sometimes surprised by the statistics of baby loss ‘in this day and age’. In its 2026 report, the Australian Institute of Health and Welfare's research on pregnancy loss in Australia estimates that 30% to 37% of Australians who have ever been pregnant have experienced a pregnancy loss. Behind every one of these statistics is a family whose future has changed forever. While awareness of pregnancy and infant loss has grown, many families still describe feeling isolated and unsure of what to say or do. The fact that the death has gone against the natural order can make people even more awkward around the subject. The language we use matters. Words have the power to comfort but they can also unintentionally cause pain. We don’t always know what to say but sometimes knowing what not to say is more important.

One of the findings from Australian research by Dr Jane Lockton* was that for some grandmothers, the loss of a grandbaby also brings back memories of their own baby loss and saw them compare the limited acknowledgement and support available in the past with contemporary approaches to baby loss and bereavement care. Their previous experiences influenced both their understanding of their child's loss and the support they offered.

From our conversations with bereaved grandparents, we know that for some, their child's loss awakened this grief in them for the very first time. However, even having experienced a similar loss, we can never assume we know exactly how someone feels but we can recognise the depth of their grief and respond with compassion.

In Lockton's research, grandparents described usually being the first to learn of a baby's death. Grandparents become the steady supporters behind the scenes and their support frequently continues long after others have returned to their everyday lives. While caring for their bereaved child and family, many willingly set aside or hide their own grief in the process. As a result, their loss often goes unrecognised, a form of disenfranchised grief. Coined by Kenneth Doka, this term describes grief that is not openly acknowledged, socially recognised, validated or supported by others. In Lockton's study, grandparents did not want attention diverted from the bereaved parents, they simply hoped their own loss would also be acknowledged by healthcare professionals. Until this happens, setting up their own circle of support is vital.

Grandfathers who have experienced baby loss, have traditionally received little attention often reflecting the social and cultural expectations of their generation to remain strong and hide their emotions. In many ways, these expectations have changed little with Lockton describing grandfathers taking on practical support roles while putting their own grief to the side. Today, we have a greater understanding that grief does not need to be hidden and a grandfather may be well placed to support a bereaved father by giving him permission to express his grief openly, reassuring him that showing emotion is not a sign of weakness.

In conjunction with Dying To Know Day, we have developed our Grandparenting Through Baby Loss course. This short course aims to provide grandparents with compassionate, practical and experience-informed guidance to help them support their families following the death of a baby or infant. Just as importantly, it recognises that grandparents experience their own grief and that also needs acknowledgement and support.

Australia is fortunate to have many dedicated bereavement organisations and charities providing specialist support to families following miscarriage, stillbirth, neonatal and infant loss. Each offers unique services, resources and expertise, from peer support and counselling to advocacy and research including hotlines by Bears of Hope: 13 11 HOPE (4673), The Compassionate Friends: 1300 064 068 and Red Nose: 1300 308 307.

Rather than grandparents searching across multiple organisations during an already overwhelming time, the ‘Grandparenting Through Baby Loss’ course brings together trusted information, support services and resources in one place, free of charge. Our hope is that by introducing grandparents to the information and resources within, they will feel more confident in connecting parents with appropriate support while also discovering services available for themselves.

Share this with a grandparent experiencing baby loss in their family - Link to course

*Acknowledgement: Lockton J. (2023). Grandparents' Experiences of Grief and Support Needs Following the Perinatal Loss of a Grandchild. PhD Thesis, The University of Adelaide.

‘Men Don't Cry- Women Do: Transcending Gender Stereotypes of Grief’ by Terry Martin and Kenneth Doka.

Australian Institute of Health and Welfare (AIHW), in its 2026 report, “Pregnancy loss in Australia: a data scoping study”

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