'Ever present': help for families after infant loss

As soon as Lilly Castor found out she was pregnant, she imagined a future filled with family adventures and tales from the school yard.

When her son Vincent was stillborn in November 2022, those lost dreams compounded her grief.

"Perinatal loss feels so isolating because there isn't a life of memories to be able to celebrate with family and friends and community," said Ms Castor, who is a midwife in country NSW.

"Often you're grieving the loss of a baby who a lot of people never got to meet.

"You feel like no one knows about it, or it's hidden."

A new online program called Living With Loss aims to help bereaved parents navigate that acute grief no matter where they live in Australia.

The self-guided digital tool has six modules to help families understand their emotions, develop coping strategies and deal with difficult conversations after the loss of a baby.

The program, developed by the Centre of Research Excellence in Stillbirth based at Mater Research and The University of Queensland, also addresses common barriers to bereavement care.

Researcher Siobhan Loughnan said families in regional Australia can face many obstacles in seeking support, such as limited services, long-distance travel and lengthy waiting lists.

"There's also often talk about stigma and feeling like their grief is disenfranchised or it's invalid because their baby died during pregnancy," Dr Loughnan told AAP.

"That's where we thought about a digital program that could be available at any time of the day or at any point in a parent's grief journey."

An emergence of additional services after perinatal loss follows the NSW birth trauma inquiry, which heard from thousands of parents and experts.

The inquiry's final report recommended expanded mental health support for families who have experienced birth trauma, including miscarriage and stillbirth.

"We're making way in bringing stillbirth and miscarriage out of the shadows from being an individual experience that no one talks about," Dr Loughnan said.

"There's much more advocacy around the real impact of loss and how it has enduring, long-lasting effects on parents and communities."

Ms Castor, who welcomed daughter Trixie with her husband Tim 10 months ago, found solace in the Living With Loss program and through friendships with other bereaved parents.

The 32-year-old is passionate about improving care in regional areas and speaking out about stillbirth, which affects more than 2000 Australian families each year.

"It's about slowly changing culture and enabling and equipping families with confidence to be able to talk about their children," she said.

"I feel as ever present and connected with Vincent as the day he was born and I was holding him.

"Although he is still a baby to me, he's a two-year-old and he's travelling with our family."