Before it even happened to her, Fotini Koklas never knew anything about stillbirth.

Fotini lost baby Bruce 14 years ago and baby Blake nine years ago.

She questions if this is because our culture doesn’t talk about it?

“I always feel like it’s cultural, and not just the Greeks, but there’s other cultures where when I do support groups, they all say ‘ in our family… in our culture we don’t talk about baby loss or still birth’,” she tells Neos Kosmos.

“When I was really young, I remember my dad’s friend, they had a stillbirth, and I remember ‘oh she lost the baby’.

“Then you just leave it at that. You don’t ask why. You don’t explain what happened. You don’t acknowledge it.”

Four years ago, Fotini began her work with Red Nose, Australia’s leading authority on sleep and pregnancy advice as well as bereavement support for those affected by the loss of a pregnancy, stillbirth or the death of a baby or child.

She started volunteering on the grief support line because when she had to go through her own grief, twice, she didn’t have support.

“I felt so alone. I wish I had support back then. I didn’t know about Red Nose. I didn’t know about free support if you’re a bereaved parent so when I found out that you can volunteer, I thought ‘OK, this is how I give back – this is how I can help others that are grieving,” she says.

Eventually she was hired at the organisation and now hosts remembrance events, wellbeing sessions and online support groups for families. These events get up to 500 people in attendance.

Finding lost babies

The work she is most proud of though, is looking after the Older Loss program, helping families locate the burial site of babies, particularly from before the ’80s.

She says three out of ten enquires she can find the baby by looking up the name and contacting cemeteries. But those others? It can be a difficult and long process.

“Right now there’s five of them I just can’t locate,” she says.

“There’s no information, the hospital doesn’t have anything. The cemetery has no records.

“Then you wonder what happened? Because back then, when you had a stillbirth or even a newborn death, the hospital kept no record of that. They kept records of the mum going in for labour but then they never recorded what happened.

She says record keeping was “terrible” back then and you don’t know where the baby ended up. They could have been cremated or even be in a mass grave, which was a common thing back then.

The longest it’s taken Fotini to find a baby was six months, and it was only after exhausting all other avenues she decided to look under the mother’s maiden name instead.

“You got to be a detective in this work,” she says.

Sometimes a baby doesn’t even have a name and was just called ‘Baby’ or ‘Stillborn (insert a name)’

“The other day I found by accident ‘Fetal Tissue’ and that broke my heart.”

“Not even a surname. So how would you even track down who that baby belongs to?”

There are also cases where there was a typo for the date of birth in records.

A healing process

And when she finally does find a baby, it brings healing, peace and closure to the bereaved parents.

“The first thing they say to me, ‘all this heavy darkness has lifted off my heart’. That’s the first thing they all say, because it’s true,” Fotini says.

“A lot of them carry guilt because they didn’t see the baby. Sometimes they didn’t know if it was a boy or a girl. The doctor just told them your baby died or your baby was stillborn. Go home, forget about it.

“They carry that guilt. The what ifs and it just goes into this rabbit hole of all these dark emotions.”

Finding the resting place of the baby, this gives them a space where they can visit.

“One of them told me, ‘I went to the cemetery the other day and I went to the spot where my baby is buried and I put my hands on the ground and I just felt like I was holding my baby after 60 years.”

A holistic councillor, Fotini describes it as a spiritual awakening because it changes their life after all these years.

She says it also heals a part of her too. For every family that comes for help, she treats it as if it’s her baby she’s looking for.

Having lost two herself, she imagines if she didn’t get the chance to see them, hold them and name them.

A community that needs to speak

Fotini says it’s an especially difficult thing to deal with in ethnic communities, where most women will just hold it all in for years.

She knows a lot of Greeks who have done just that, and from her experience with them, she thinks it’s the shame they feel.

“If anything wrong happens it brings shame to the family, whether it’s divorce or whether you can’t fall pregnant,” she says.

“Then you live with that. You feel judged. ‘She’s not good enough or he’s not good enough’.”

She says it’s even worse when one is trying to grieve a baby.

“No one understands because no one wants to be there for you,” she says.

“It’s really heartbreaking and I really hope this article, a lot of our community reads it and they know that it’s OK to grieve your baby, even though if others don’t want to talk about it, it’s OK.

“You’re a mother who lost your child, and a father. No one really talks about the dads. They all talk about the mum. But what about the dads?

“Especially in the Greek community as well, dads have to have this manly kind of appearance. ‘We don’t cry, we don’t talk about our feelings’. But they are hurting too.”

Right now Fotini is helping six Greek families and has realised a majority of her clients have been Greek.

She hopes more can open up if they’ve been through something similar because the support is out there.

The Red Nose Grief and Loss Support Line is available 24/7 for anyone affected by the loss of a pregnancy, stillbirth or death of a baby or child on 1300 308 307.

To get in contact with the Red Nose Older Loss Group call 1300 998 698.