By Hagar Cohen and Alex McClintock
More than 2,000 babies are delivered still in Australia every year, but stillbirth is still a taboo topic. These parents want to share their stories to raise awareness.
“You don’t know how to handle outliving your own child. Not many people realise how common it is or what people go through. Because many people experience it in silence, society doesn’t know how to deal with the death of a child.” –Debbie.
Debbie and Minh’s daughter Zoe was stillborn at 41 weeks and one day. It had been an uneventful pregnancy.
“On the Sunday, four days away from being induced, we were at church and it was hard for me to stand up,” Debbie said.
“I thought maybe my feet were too swollen. My obstetrician has advised that if your feet are swollen, go to the hospital or come into the clinic to get your blood pressure checked.
“We went to the hospital thinking it would be a straightforward check up, but sadly we were given the news that turned our world upside down: Zoe had passed away.”
The couple chose to spend an extra day in hospital with Zoe, and were provided with a cuddle cot — a refrigerated bassinet — which they say helped them with the grieving process.
“Zoe was at 41 weeks, so she was fully developed,” Minh said.
“She was born perfect, cute, but sadly sleeping. We chose to use the cuddle cot so that we and our families could spend as much time as we could with our little girl.”
The circumstances of Zoe’s birth were was a shock to the couple. They would like to see more information available to expectant parents about stillbirth, and an end to the silence and stigma surrounding it.
“To me it’s just surprising that the still birth rate hasn’t reduced,” Minh said.
“We’ve managed to reduce the rate of SIDS, so why can’t we reduce the rate of stillbirth? To me there seems like there is still a lot of research that needs to be supported into stillbirth in Australia.”
“We went into survival mode. It wasn’t until later that I really sat down and thought about it. I think about it a lot now. I wouldn’t be so trusting, I’d be voicing all my concerns a lot louder”. -Kate.
Kate Pizzey considered herself lucky when she became pregnant at the age of 40 through IVF.
But late in her third trimester she began to feel uneasy. She went into her 37 week appointment with her obstetrician expecting that feeling to be resolved, and told the doctor she had noticed her baby slowing down. He told her that was normal.
“I left the room and I felt I wanted to get back to the room, but I thought, well, what will I say? I told them everything I know, I can’t really tell them that I have a strange feeling,” she said.
“I couldn’t explain it. I just had an uneasy feeling.”
What Kate hadn’t been told is that decreased foetal movement (DFM) late in pregnancy is a warning sign for stillbirth. A few days later she woke in the middle of the night.
“I woke at 4.30 — sat bolt up in my bed, out of my sleep, and thought: I don’t remember when my baby last moved,” she said.
She drove straight to the hospital, but her baby, James, had already died. Now she says there should be more information for expectant mothers about the importance of monitoring foetal movements.
“We went into survival mode. It wasn’t until later that I really sat down and thought about it. I think about it a lot now. I wouldn’t be so trusting, I’d be voicing all my concerns a lot louder,” she said.
“Info is power isn’t it? If you’ve got all the knowledge you monitor it. I understand they don’t want women on the doorstep every five minutes with anxiety and stressing, but there needs to be some awareness about monitoring movements and not accepting that at the end if there’s less movement that’s OK.”
“We didn’t get to walk away from it. We woke up every day thinking about it.” -Andrew.
Kate and Andrew’s first son, Alexander, was stillborn at term. It was a normal pregnancy; Alexander was slightly overdue and a date had been set for an induction when he stopped moving.
In the delivery ward, Kate, a paediatrician, and Andrew, an anesthetist, understood immediately what the absence of a heart rate on the ultrasound monitor meant.
“In hindsight I feel very stupid,” Kate said.
“In my very last week of work I came on for a morning shift, and the registrar came over and said: ‘It’s very sad, there was a stillborn last night. Oh, sorry, you don’t want to hear that.’
“And I said, ‘It won’t happen to me.'”
Ten years later, the couple have three energetic boys, but still grieve for Alexander.
“It’s still raw, even though it’s 10 years down the track,” Kate said.
“Subsequent pregnancies were extremely stressful. But the thing that is most frustrating is that there’s no cause. We don’t have a reason. He was healthy.”
For Andrew, the reactions of friends and acquaintances were an additional challenge.
“Quite a lot of people had that impulse to not talk about it at all, to pretend that it was a thing that hadn’t happened. From our point of view, that was devastating,” he said.
The couple hopes that greater awareness of stillbirths will mean other families feel more supported.
“When people ask how many kids we’ve got, I always say, ‘I’ve got three little guys at home,'” Andrew said.
“That way I know I haven’t dismissed Xan’s existence.”
“Archie was tiny. He was only 2.3 kilograms, he had curly blonde hair like me. He had really long legs. He had no chin like me and his dad. He had really big feet. He was so tiny. I remember being surprised at how small he was. He was perfect.” -Bree.
Bree Amer’s son Archie was born two years ago.
“It was me and my husband Evan’s first child, so it was really exciting,” said the Channel Seven producer.
“The first grandchild in my family. Everyone was so excited. We found out at the 20-week scan that it was a boy. Which was great, nice for Evan; he planned every camping and fishing trip under the sun. It was just a really exciting time, quite blissful.”
Though nobody had spoken to Bree about foetal movement, she was worried in the final weeks of the pregnancy that the baby was small and wasn’t moving enough. She mentioned her concerns to her obstetrician, but an ultrasound indicated everything was fine.
Then, after the baby shower, the baby stopped moving. At the hospital, the staff could not find a heartbeat. Now she wonders why the red flags were missed.
“I had two of the main signs that something wasn’t right: why didn’t that mean something? That was the saddest part for us to accept. We got a second opinion on the autopsy — and his death was preventable.
“There were signs that something wasn’t right. And they were missed.”
“It is a grief and a pain that doesn’t go away, but you do learn to live with it, it does become part of you. It’s a drive and a passion that’s never going to subside.” -Claire.
Claire Foord’s daughter Alfie was born in February 2014 but never drew a breath. The devastating experience led her to establish Still Aware, a charity that campaigns to raise awareness of stillbirth.
In the two weeks leading up to her birth, Alfie’s movements slowed dramatically and then stopped, but Claire was told things were normal by her obstetrician and midwives.
“The last time I felt her move was at 2:00am,” Claire said.
“That was the last kick, the last roll that I would ever feel. I had no idea I had just been privy to her death inside me.
“I went into hospital the next day after procrastinating because I thought I was mad, thinking I was going to give birth to a live, healthy baby.”
Still Aware encourages mothers to pay attention to their babies’ movements, educates clinicians about guidelines and works to dispel misinformation, such as the commonly held belief that babies’ movements slow before birth.
“Stillbirth happens every four hours in Australia. That’s six babies a day … Unfortunately there’s this myth that stillbirth is rare. Rare compared to what? It’s really not rare,” Claire said.
This year, Claire’s work was recognised when she won South Australia’s Local Hero in the Australian of The Year Awards.
“I think there’s a lot of power behind somebody who has lost their child to stillbirth, whose child was born and died simultaneously,” she said.
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