'I miscarried 10 times. This is what it taught me about caring for bereaved parents.'

Social worker and mum of three Terry Diamond knows what it is like to experience devastating loss.

Terry and her husband Russell wanted a third child to complete their family of daughter Amy born in 2001, and son Jonathan born in 2003. She went through many unsuccessful rounds of IVF and 10 miscarriages over three years.

"Medically, I felt well looked after but emotionally not as much," Terry tells Mamamia. 

"After one miscarriage at 17 weeks, I remember a social worker in hospital handing me a single piece of paper with some 'how to look after yourself' tips on it for when I got home. Then I was left to navigate looking for support alone; we were just expected to get over it and get on with it."

Watch: A tribute to the babies we have loved and lost. Post continues below.

Terry says that attitudes of some people around her were also hard to deal with.

"People would say to me, 'why are you doing this to yourself?' or, 'you've got two kids already' or 'at least you can get pregnant'. There was a lot of minimising and dismissing of the impact of my pregnancy losses. 

"Thankfully, things have changed a lot in the almost two decades since."

Because of her own experiences of miscarriage and the lacking emotional after care, Terry has made it her life's work to help other women and families who go through pregnancy loss and still birth.

A few years before she gave birth to her third 'miracle baby', daughter Tali in 2007, Terry began studying to become a counsellor. She started working for Red Nose as a bereavement counsellor before going into private practice.

"I was constantly hearing stories from women about the experiences they were having in the hospital system and the things they wish that they would have been able to do with their stillborn babies.

"From just having more time with their babies to being offered more support. Another issue was that it was inconsistent; some hospitals and midwives organised mementos for grieving parents and provided good after care, where others did not. Then a mix of mums would come together as part of a support group and it was triggering for the parent to realise they missed out on a particular experience or memento, but by then it was too late."

It was these personal stories from other women that made Terry realise things still needed to change at the hospital level. 

"In 2012 I began studying a Master of Social Work, so that I could become a hospital social worker and specialise in working with women who experience miscarriage and stillbirth."

"I did a placement at the Royal Hospital for Women in Sydney and got a permanent job as a social worker once qualified."

Listen to this bonus episode of No Filter about pregnancy loss. Post continues below. 

Terry has spent the last almost decade steering grief-stricken parents at the Royal through the shock of miscarriage or baby loss, providing support and helping them to create a lifetime of memories in the space of a few hours or days.

"In Australia, we have come so far since I experienced my losses and we have normalised the conversation around miscarriage and stillbirth. There was very little Australian-based support for miscarriage but now we have organisations like Pink Elephant doing great work and offering amazing support. The world of social media has changed conversations and online support is huge now too."

Within the hospital system, there have also been major changes that benefit grieving women and their families. 

"The women are going through the most difficult and traumatic experience of their lives but it is also a time sensitive situation. And that is really hard because they are often numb and in shock. 

"We are on hand to help because it can feel quite unnatural to bathe a baby that's died, to spend time with a baby that has died, or to introduce the baby to family members and take beautiful photographs. But we have come a long way towards normalising the conversation around these experiences. 

"Even the tiny babies stillborn from around 16 weeks and who weigh as little as 150 or 200 grams; we can take hand and footprints as mementos. We also have a volunteer who's a retired nurse, and she sews tiny clothes for these babies born sleeping. We respect the baby and the family's wishes, we use the baby's name and do what we can in the short time we have, because still birth and pregnancy loss differs greatly from any other type of grief and loss."

Terry says all Australian hospitals now have written guidelines in place to ensure grieving parents are provided with some form of support and care. At The Royal, she recently introduced a 'bereavement pram' which families can use to take their babies for a walk outside - a memory which they never otherwise would have been able to make.

"Mum Rachael Casella whose daughter Mackenzie died of a rare genetic disorder when she was only seven months old, donated Mackenzie's pram to us. We have put a little star on the pram and we tell parents Mackenzie's story. It is so special for bereaved parents to have the experience of placing their baby in a pram to take them for a walk and make memories.

"We also have a viewing room which is on a different floor to the birthing suite. So it's just a beautiful way for families want to take their babies upstairs in the pram to a designated place to meet grandparents or siblings. We also have several donated 'cuddle cots', special bassinets with an ice pack underneath that lets parents spend time with their babies if they want to. 

"Not everything is right for everybody. We just want to give them all the options and opportunities to do everything and they can tap in or out as to what suits their comfort level suits. it's really about respecting individual journeys and families, their cultural backgrounds and religious beliefs."

The Royal viewing room for bereaved parents. Image: Supplied.

The grief of losing a baby is difficult enough, but Terry says that parents who experience a stillbirth from 20 weeks also have the added complication of being legally required to organise their baby's burial or cremation.

"We explain to them the statutory requirements to have a burial or cremation and we give them a list of funeral providers. There's bereavement support available from Centrelink, so we provide them with the paperwork.

"We have a mortuary on site so we look after their babies for them until they're collected and they're able to come back and view their babies once they discharged from hospital."

Terry says that while the support and bereavement offerings have improved vastly in the last 20 years, she still has work to do. She hopes that more public donations will allow her to help women who lose babies in early pregnancy, as well and start an ongoing support group for those who’ve experienced infant loss. 

"Babies die and pregnancies miscarry; sadly it's a normal part of some fertility journeys and we need to keep talking about it and offering support to women and their families who are going through it. There should be no shame involved and there's nothing to be guilty about - it is just really sad.

"In time I hope we can offer ongoing counselling support as we currently only refer out to other private counsellors and community support providers once we discharge the parents. 

"We still don't have the capacity to reach and support every woman in the hospital who experiences early pregnancy loss, which is why I will continue to keep raising funds to help us achieve these goals in the future." 

The Royal provides extraordinary healthcare for women through all of life’s stages: from fertility and genetics, to gynaecology, maternity, gynae-oncology, high risk pregnancy, perinatal mental health and neonatal intensive care. It relies on community and philanthropic support to make a massive difference in people’s lives. Donations can be made through The Royal Hospital for Women Foundation. 

Laura Jackel is Mamamia's Family Writer. For links to her articles and to see photos of her outfits and kids, follow her on Instagram and TikTok.

Feature Image: Supplied.