Home Babies needs Women open up about ‘unique grief’ of miscarriage and stillbirth

Women open up about ‘unique grief’ of miscarriage and stillbirth

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Terry Diamond describes the loss of a pregnancy or a child as a “unique grief”.

She knows both her lived experience and her 15 years of work as a grief counselor.

Almost two decades ago, Terry suffered 10 miscarriages in the space of three years.

“Nobody talked about it, it was like a dirty little secret,” she recalls.

“I went to various psychologists (but) no one could really understand the unique grief associated with perinatal loss.

“The advice they were trying to give me was ‘everything will be fine, move on, forget it’.”

Terry did this by getting into the study, and during an internship with Red Nose, which supports families affected by the loss of an infant or child, was able to receive counseling herself.

Unlike the death of an elderly or sick person, the usual platitudes don’t offer much comfort, Terry said.

“When it comes to the death of a baby, no one knows what to say, there’s not much to say to make anyone feel better,” she said.

“And yet people still try to do that, and it really takes a toll on the grief of the person who lost the baby, who then doesn’t feel validated in the huge emotional toll it’s costing them.”

Terry Diamond has been supporting parents through miscarriage and stillbirth for 15 years.(ABC News: Provided)

Creating memories after a loss

Terry is now a social worker at the Royal Hospital for Women in Sydney, helping other parents who experience perinatal loss, including miscarriage and stillbirth.

The hospital offers parents the opportunity to create memories with their baby that they might not have been able to do otherwise.

“We try to do things that we know are going to help them deal with their grief,” Terry said.

“We take the baby’s handprints and footprints if we can…we care for their babies with respect…and connect them to support services, and really validate the huge impact this loss can have on them.

“But we are under-resourced…we would like to be able to reach everyone who is experiencing loss and should be able to do so at the largest 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.

A framed picture of baby footprints and a photograph of two parents holding a baby
One of the souvenirs provided by the hospital for Amanda and Grisha(Provided: Amanda Payne)

Amanda and Grisha’s twins, Riley and Lucas, were born just before 25 weeks and went straight to intensive care.

Riley died at the age of two days, after suffering a cerebral hemorrhage.

“I had been up for almost four days, no sleep, on drugs, no idea what was really going on, I didn’t really understand the extent of what was going on,” Amanda recalled.

“(Terry) made memories for us for a baby that we were able to hold for three hours.

“She pretty much just told us what to do in a very kind and caring way – ‘here’s a book, why don’t you read her a story?’

Mother and father with premature baby on life support
Amanda, Grisha and Riley, who died when he was two days old.(Provided: Amanda Payne)

“We were able to be a part of it as much as we wanted and I really liked getting all of his (medical) leads out, so it was mum doing what needed to be done, because I couldn’t be a mum for long.”

Baby Lucas spent four months in intensive care, and although he is doing well now, he still has significant feeding issues.

Amanda said she really wasn’t able to properly mourn Riley, but was grateful for all the memories she now has of her son.

“If (Terry) hadn’t walked us through this, we wouldn’t have had any of this.”

Amanda and Grisha Payne with their son Lucas - supplied
Amanda and Grisha Payne with their son Lucas.(Provided: Amanda Payne)

Parents feel alone in their bereavement

The impact of perinatal loss can be significant and also affect parents, grandparents and other family members who do not give birth, according to counseling psychologist Erin Seeto of Gidget Foundation Australia.

In 2019, there were nearly 3,000 perinatal deaths in Australia, the majority of which were stillbirths.

It is estimated that approximately 20% of pregnancies end in miscarriage.

Smiling woman
Consulting Psychologist Erin Seeto of Gidget Foundation Australia.(ABC News: Provided)

Dr Seeto said about one in five women who miscarry will experience symptoms of postnatal depression and anxiety.

“We really need to be mindful of mental health and aware of the signs and symptoms,” she said.

“With the 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 were part of.

“We know partners typically cry differently… so being aware of that and the differences in conflict and disruption that can [be] caused between a couple if the mourning is different.”

Framed sculpture of two silver baby feet
A keepsake provided by Riley’s Baby Hospital.(Provided: Amanda Payne)

There’s also some way to go to reduce the stigma associated with miscarriages and stillbirths, Dr Seeto said.

Recent research from Gidget found that 13% of people who had a miscarriage said they felt lonely in their grief, and 10% feared burdening others.

“To me it’s really sad that at a time when you really need this support, you are aware of the impact your loss could have on others and therefore you don’t want to share it or burden it. “, she said.

“It’s not about making the loss go away, it’s just about being with the person on their journey.”

Women’s needs must be listened to

Clinical director of the Australian Commission on Safety and Quality in Health Care, Liz Marles, said there is 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 to it.

“It gives advice to all people in hospital at the time of stillbirth, which may include… making sure that when [parents] come back for their checkup, they’re not in a room full of women who just had a baby,” she said.

Woman in white and black smiling at the camera.
Clinical Director at the Australian Healthcare Safety and Quality Commission Liz Marles.(ABC News: Provided)

“Providing a private space is a really important thing, giving people time is really important and then, once they’ve been released, setting up services to support that person.”

Dr Marles said it was important to consider cultural practices and needs when parents experience loss.

“We know, for example, that Indigenous women are often hospitalized far from their community,” she said.

“We need to make sure the care and support they receive is right for them.

“So a lot of it is us, hearing from the women themselves and their families about what they need, and then making sure we put that in place.”

A spokesperson for NSW Health said there was $2.9 billion for mental health services in the last budget, and $2.6 million over two years went to support the Gidget Foundation.