Terry Diamond describes losing a pregnancy or an infant as a "unique grief".
She knows from both her lived experience and 15 years of work as a bereavement counsellor.
Nearly two decades ago, Terry experienced 10 miscarriages in the space of three years.
"Nobody spoke about it, it felt like a dirty little secret," she recalled.
"I went to see various psychologists (but) nobody could actually understand the unique grief associated with perinatal loss.
"The counselling that they were trying to give me was 'you'll be fine, move on, get over it.'"
Terry did that by throwing herself into study, and during a work placement at Red Nose, which supports families impacted by infant or child loss, was able to receive counselling herself.
Unlike when an elderly or sick person dies, the usual platitudes don't offer much comfort, Terry said.
"When it comes to a baby dying, nobody knows what to say, there's not much you can say to make somebody feel better," she said.
"And yet people still try and do that, and that really impacts the grief of the person who's lost the baby, who then does not feel validated in the huge emotional toll that that takes on them."
Creating memories after loss
Terry is now a social worker at Sydney's Royal Hospital for Women, helping other parents who are experiencing perinatal loss, including miscarriage and stillbirth.
The hospital offers parents the opportunity to create memories with their baby, something they may otherwise not get to do.
"We try and do things that we know are going to help them to process the grief," Terry said.
"We take handprints and footprints from the baby if we can... we respectfully take care of their babies ... and we connect them to support services, and really validate the huge impact that that loss may have on them.
"But we are under-resourced ... we'd love to be able to get to everybody who experiences a loss and should be able to in the biggest women's hospital in New South Wales."
When Amanda Clark and her partner Grisha lost their baby son Riley in April last year, Terry was by their side.
Amanda and Grisha's twins Riley and Lucas were born just short of 25 weeks, and went straight into intensive care.
Riley died when he was two days old, after having a brain bleed.
"I had been up for nearly four days, no sleep, drugged up, no idea really what was going on, I didn't really understand the magnitude of what was happening," Amanda recalled.
"(Terry) created memories for us for a baby that we got to hold for three hours.
"She pretty much just told us what to do in a really kind considerate thoughtful way - "here's a book, why don't you guys read him a story?" and we obviously had turns cuddling him.
"We got to be a part as much as we wanted and I really enjoyed taking off all his (medical) leads so it was mummy doing what needed to be done, because I couldn't be a mum for long."
Baby Lucas spent four months in intensive care, and while he's doing well now, he still has significant feeding issues.
Amanda said she really hasn't been able to properly grieve Riley, but is grateful for all the mementos she now has of her son.
"If (Terry) hadn't have guided us through that we wouldn't have had any of that."
Parents left feeling alone in their grief
The impact of perinatal loss can be far reaching and affect non-birthing parents, grandparents and other family members too, according to counselling psychologist Erin Seeto from Gidget Foundation Australia.
In 2019, there were nearly 3,000 perinatal deaths in Australia, the majority of which were stillbirths.
It's estimated about 20 per cent of pregnancies end in miscarriage.
Dr Seeto said about one-in-five women who have a miscarriage will experience symptoms of postnatal depression and anxiety.
"We really have to be mindful of mental health and aware of the signs and symptoms," she said.
"With loss, it's more complicated because you're also looking at elements of sense of identity, being able to trust your own body again ... being able to trust the medical system that you've been part of.
"We know that the partners generally grieve differently ... so being mindful of that and the differences in conflict and disruptions that can [be] caused between a couple if the are grieving differently."
There is also some way to go to reduce the stigma associated with miscarriage and stillbirth, Dr Seeto said.
Recent research by Gidget found that 13 per cent of people who'd experienced miscarriage reported feeling alone in their grief and 10 per cent were worried about burdening others.
"For me, that's really sad that at a time where really you need that support, you are conscious of how your loss might impact on others and therefore not want to share or burden them with it," she said.
"It's not about making the loss disappear, it's just about being with the person while they're on that journey."
Women's needs must be listened to
Clinical director at the Australian Commission on Safety and Quality in Healthcare Liz Marles said there's a wide variation in the care provided to parents when they experience perinatal loss.
The commission has just released a new national standard on stillbirth, aimed at reducing the rate of stillbirth, but also the stigma attached.
"It's giving guidance to all the people in the hospital around the time of the stillbirth, so that might include ... making sure that when [parents] come back for their health check, they're not in a room full of women who've just had a baby," she said.
"Providing private space is a really important thing, giving people time is really important, and then, once they've been discharged, putting services in place to support that person."
Dr Marles said it's important extra care is taken to consider cultural practices and needs when parents experience a loss.
"We know for instance, for Aboriginal women, they're often in hospital away from their community," she said.
"We need to make sure that the care and the support they get is appropriate for them.
"So a lot of it is us, hearing from the women themselves and their families about what they need, and then actually making sure that we put that in place."
A spokesperson for NSW Health said there was $2.9 billion for mental health services in the most recent budget, and $2.6 million over two years had gone to support the Gidget Foundation.
