Why Red Nose Day matters: Canberra couple share their heartbreaking story

It’s every parent’s worst nightmare and it happened to Canberra’s Bonnie Carter not once, not twice, but no fewer than four times.

Bonnie is a local volunteer with Red Nose Australia. Every year on the second Friday in August, this not-for-profit charity invites Australians everywhere to “get silly for a serious cause” to raise much-needed funds to save little lives and support families impacted by the death of a baby or child.

Bonnie’s journey began in early 2016.

She and her husband Steve had a house and decided they were ready to fill it with the joy of little ones. The pregnancy itself didn’t come easy but seemed healthy enough until at least the 15-week mark.

“We had some tests and scans and they revealed bub’s heart was pretty sick,” she says.

The staff at the Canberra Hospital referred them to the more targeted medical attention available at Westmead Children’s Hospital in Sydney.

“We went there to ultimately fix this baby’s heart and find out what we could do to bring this baby into the world.”

However, the diagnosis was “incompatible with life”.

Grace was born at 19 weeks on 2 June 2016 in Canberra with an extremely rare condition that affects one in 8000 babies called Hypoplastic Left Heart Syndrome (HLHS). Basically, she only had half a heart.

“It was really hard, but surprisingly peaceful because we knew Grace was out of pain and didn’t have to live a life of suffering,” Bonnie says.

The Carters embarked on a string of follow-up appointments to determine if any underlying genetic conditions would rule out healthy pregnancies in the future. They were assured Grace’s condition was a freak occurrence. A year later, they tried again.

“Everything was going perfectly – we could see from the scans that she had a perfect heart,” Bonnie says.

“We were really excited and set up the nursery. We were going to have our ‘rainbow baby’.”

Initially, the midwife suspected faulty equipment come December 2017, but even after moving Bonnie to another room for a routine Doppler ultrasound, there were 10, then 20, then 30 seconds of no heartbeat.

“We were faced with a whole raft of emotions,” Bonnie says.

“I was just ducking in for a quick appointment, and all of a sudden, Matilda had been ripped from us.”

Something as clumsy as words struggle to do the couple’s feelings justice, but Bonnie describes it as the “most raw and awful pain a human can experience”.

“Especially for me as a mum, to have your baby pass away inside your warm belly, you feel a range of emotions you never thought possible.”

“We couldn’t fathom that we would ever bring a healthy, living, breathing baby into the world,” Bonnie says.

“And we didn’t know how we could possibly fight through the process of going through another pregnancy, not knowing the outcome.”

Steve and Bonnie felt they had to do something to “be able to live and thrive as a couple again”.

“We did a lot of fundraising and awareness activities and became stillbirth and infant loss advocates in Canberra, doing heaps in the space to try to help not only ourselves, but also others in our situation. We didn’t want anyone else to ever feel our pain.”

Using funds raised at Matilda’s funeral, they renovated what was essentially the ‘bad-news’ room in the Fetal Medicine Unit at the Canberra Hospital to make it more homely.

In the meantime, more tests came back with no explanation as to why neither girl made it, so the couple “put their brave pants” on and tried again.

“We ended up in our newly renovated Bereavement Suite with the two subsequent miscarriages,” Bonnie says.

“By this time, we had been through enough grief and found enough resilience to get through those periods.”

But still, they didn’t give up.

Two years later, the Carters were introduced to a Newcastle-based professor of obstetrics with a connection to Red Nose Australia. He provided them with in-depth information and plans for one final effort to deliver a healthy baby.

“We knew that if this failed, we had done everything medically possible.”

Bonnie fell pregnant for the fifth time in December 2020, but she knew there was something different about this one.

“I had a good feeling that this was finally it.”

A few months later, overwhelming relief arrived in the form of little Evelyn. She turned one on Tuesday, 9 August.

“We now have that little rainbow baby we’ve been trying for for so long, and she’s the most wonderful little human we’ve ever met.”

Throughout the agonising years, Bonnie and Steve realised the true impact the Red Nose support services have on families in their situation.

“We had an amazing counsellor who met with us regularly and we really developed a personal connection with her,” Bonnie says.

Since the first Red Nose Day in 1988, it has sparked a global movement and catalysed research into Sudden Infant Death Syndrome (SIDS), or finding out why babies die suddenly in their sleep. In that time, there has been an 85 per cent reduction in sudden infant deaths in Australia.

But every year, more than 3000 babies still die suddenly and unexpectedly each year in Australia, lost to SIDS as well as stillbirth and other tragedies. It’s still estimated that more than a third of new parents don’t know how to safely sleep their baby.

“It’s not just babies either,” Bonnie says. “We support families who lose a child up to the age of 18.”

Bonnie is now on the National Community Advisory Committee for Red Nose Australia; earlier this year, she received an Order of Australia medal for her advocacy work within the ACT region.

She says that while all deaths are not preventable, Red Nose Day remains important.

“Everyone seems to know someone with a story of child loss,” she says.

“Don’t shy away from talking about it. Say their baby’s name to honour their little lives, even though they’re not here and might not ever take their first breaths or first steps or celebrate their 18th birthday.”

To donate, visit Red Nose Australia. To learn more about support services, visit Red Nose Australia Grief and Loss.