Grief After Child Loss: Parents Share Experiences and Support

When Eddie Symond's son Seb died at 10 months old, there was little people could do to ease her incredible pain.

"He loved his mum and he just brought so much joy," the 41-year-old from Sydney's Northern Beaches says of Seb.

Seb died after a "catastrophic" seizure, related to a rare genetic condition he was diagnosed with four months earlier.

It was a condition Eddie and husband Ant had expected him to live with, after connecting with another family managing it with medications.

"This baby three days ago was thriving and alive, and today we've been told that he will not make it any longer," Eddie recalls of the day he was pronounced brain dead.

“After we let him go, leaving the hospital without my baby was the worst night of my life. I remember I just laid in his cot and cried."

She says it was small acts of kindness that supported her in the devastating new reality of life without their son.

But not everyone was able to sit with Eddie's grief.

"I know people who regret not going to Seb's funeral and told me about it and then would say, 'I didn't want to upset you'," she says.

Yumi Stynes, host of ABC podcast Ladies, We Need to Talk, sat down with mothers who have lost babies to talk about continuing in the wake of such grief, and how people stepped up, or stepped away.

You don't stop being parents

Rachel Ficinus is a registered psychologist and director of bereavement services at Red Nose Australia.

She's spoken to more than 200 families who have lost their children.

"When you decide to have a family, you have all these hopes and dreams that you kind of prepare for … and then this experience happens to a family, and all those hopes and dreams just change."

Ms Ficinus says when a child dies, parents don't stop being parents.

"That baby's no longer here, which is devastating. But that identity of being a mother is still really important to acknowledge and to validate … and to fathers."

Eddie was on maternity leave when Seb died — going to Rhyme Time at the library, taking walks with other mum friends.

"And that was very difficult, because the best girlfriends didn't stop asking me [to come along]," Eddie says.

"But going for a walk without a pram with a bunch of women who are pushing a pram was really, really hard."

She says small gestures were a lifeline in those early days.

"One of my girlfriends just used to make my bed every day, and most days I wouldn't have even known she was there.

"[She'd spend] two or three minutes there … and that was just an incredible act of kindness.

"[It] just means so much because there is nothing you can do."

'We're together and that's what matters'

Six years ago, 29-year-old Sky Matheos and partner Trisdan from Melbourne/Naarm were excitedly expecting twins.

But health complications meant they were born early at 24 weeks.

Remi arrived first, weighing 512 grams. Baby River followed, weighing 576g.

"They pretty much got whisked away straight to the NICU [Neonatal Intensive Care Unit]. I was just relieved that they were born and from what I could see, seemed to be OK," says Sky.

"They were just so beautiful."

At four days old, the twins contracted an infection and weren't responding to medication. Sky and Trisdan were told their babies were unlikely to survive the night.

River was weakening rapidly and the doctors recommended Sky hold her.

"Trisdan and I sat in the chairs, and they put River on my chest and I held her for … a little bit under an hour or so while she was still breathing.

"It got to the point where I looked at the doctor … and she signalled to the nurse that her heart wasn't beating anymore."

Remi was still holding on and was placed on Sky's chest along with River so they could be together.

"Having them in my arms, I felt full and content, despite the situation, I just thought, I guess this is reality right now and we're together and that's what matters," Sky says.

When Remi also passed, Sky says she and Trisdan "completely broke down".

"It's like … yeah, wow, OK. So they just died. Like what the hell now?"

They want to hear their baby's names

Grief is unpredictable and looks different for each person, explains Ms Ficinus.

"It can be shock, it can be tears, screaming, yelling, silence. It can be humour."

And while time can be healing, she says grief is always there.

"Maybe five, 10 years later, and you may watch something or smell something or see something that triggers off a memory or your grief, and it's like it happened today."

Because people often don't know what to say or do for someone who has lost a child, they often resort to silence.

"They don't want to bring things up for people or remind them of something bad that's happened," Ms Ficinus says.

But people who have lost children generally want to talk about it.

"They want to hear their babies' names," Ms Ficinus says.

"If you can sit with someone in their grief, if you can sit with someone in their pain, that is just the most beautiful thing you can do to acknowledge it, witness it, and for people to feel seen and heard.

"And the small acts of kindness [such as] of acknowledging the baby's birthday."

After Eddie lost Seb eight years ago, she had a son, Dash, and daughter, Elodie, who have an active connection to their older brother.

"Seb is so alive in our family. If anyone asks our kids if they've got brothers and sisters, they will say, 'Yes, we've got one brother, but he's dead.'

"Which is always great to see people's faces."

The family remember Seb in many ways, including sprinkling some of his ashes on every family holiday, and making a cake on his birthday.

'You can't remind me my own children have died'

Almost a year after she lost the twins, Sky conceived daughter, Rain.

"Of course, no baby could ever replace Remi and River, but it was just that maternal urge that like my body had given birth and it knows it gave birth and my arms were empty."

Sky then had daughter Ruby.

The two girls, now aged four and three, know they are part of a family of six.

"I have always spoken about the twins lovingly and openly to Rain and Ruby."

Sky wishes others spoke about Remi and River more.

"There's a very common misconception that people say, 'Oh, I don't want to bring them up to you because I don't want to upset you.'

"But why would you upset me or remind me that my own children have died?

"Like, you couldn't possibly remind me, it's in my head every waking second of my existence."