Recognising the pain of pregnancy loss

“I knew that she was dead because she hadn’t moved all night. I knew that I would be breaking the heart of my daughters, I knew I was going to be breaking the heart of my husband and my entire family who were all looking forward to this beautiful girl we were going to have and that was just all overwhelming to me, that emotional responsibility.”

When Till Heike remembers the day she lost her baby, Claudia, at 32 weeks, she says she was unaware just how often stillbirth occurs. She says no one told her this was a possible outcome — that at the end of her pregnancy, she and her husband wouldn’t take that baby girl home to their family and friends.

Australian pregnancy loss support organisation SANDS estimates more than 106,000 babies die each year from early stage miscarriages through to neonatal loss. They say on average, six babies are stillborn in Australia every day.

Losing a baby affects each of these families differently with many experiencing mental, physical, social and financial loss. National support organisations say that although nothing can completely heal a family, the more support a family has, in the short term and long term, the more equipped they are to process their experience with pregnancy loss.

A baby rattle left in the memorial garden at KEMH by a bereaved family.
The name has been removed for privacy.

The Federal Government recently recognised the need for such support and announced in the 2020-21 Federal Budget a $7.6 million package to be directed to address inconsistencies in the support for families affected by stillbirth or by the loss of a child before their first birthday. The Stillborn Baby Payment and Bereavement Payment is aimed at all eligible families and offers up to $3,606.81 whether it if their first claim or not. This money can be used on any cost that is the result of a pregnancy loss, including funerals and burials, mental health support, and any other social, physical or financial needs.

This government acknowledgement is not the only one in recent years. In February, the Federal Government announced a guaranteed 12 months unpaid paternity leave for all eligible new parents, even those experiencing stillbirth or infant death. This was previously only a six-week entitlement and was deemed insufficient for those parents who needed more time before returning to work. This recommendation came from the 2018 Senate Inquiry into Stillbirth Research and Education that tabled its report with 16 recommendations on December 4, 2018.

The Safer Baby Bundle package was also funded for selected states, initially excluding WA, as an education and awareness tool with online modules for health professionals and pregnant women. This was announced in October 2019 by the Federal Health Minister Greg Hunt who says the bundle would focus on five key risk areas including safe sleep, quitting smoking, regular growth checks, movement patterns and birth timing. The WA Government announced it had joined the program in November 2020.

With unchanged statistics, and limited awareness about stillbirth amongst pregnant women, even despite these initiatives, support organsations across Australia are calling for more action.

Ms Heike described her experience with pregnancy loss as “like many women” in that it was not just one instance. The term pregnancy loss encompasses three separate categories; miscarriage, stillbirth and neonatal death. King Edward Memorial Hospital specialist midwife Sonya Criddle explains miscarriage is a loss before 20-weeks gestation. Stillbirth refers to any baby born after 20-weeks gestation with no sign of life at the time of birth, and a neonatal death occurs when a baby is born with signs of life but passes before reaching 28 days old.

Following multiple early miscarriages and a painful ectopic pregnancy, Ms Heike fell pregnant with her daughter, Claudia. She described the pregnancy as normal up until 32 weeks.

“I thought that I knew about stillbirth, but what I knew was a decrease in movement is a warning sign — that’s a sign of distress — so I was clued onto that if that happened, I need to go and seek medical help but I can’t say that’s exactly what happened in my case,” she says as she initially experienced an increase in fetal movement with the baby seeming to be pushing outwards.

At 32 weeks pregnant, she went to bed. Getting up to use the bathroom during the night, she noticed that her baby did not seem to be moving despite how many times she got up. She says she didn’t consider this a red flag at first – baby is just asleep, she told herself – but a heartbreaking thought was playing in the back of her mind.

Claudia Heike was stillborn two days later. With no thudding heart on the ultrasound, a confirmation of death was given and Ms Heike says she struggled to keep up with all that followed. She praised staff at the hospital she attended for knowing what to say and do, and engaging her and her husband with special memory making tools to establish the bond between the newly bereaved family.

Ms Criddle says time spent with a baby who has died is an important step in the grieving process as it allows the family to acknowledge what had happened and spend some moments being a parent to that child. At KEMH, Ms Criddle says families experiencing stillbirth and neonatal death receive a memento box filled with items such as swaddles from the birth along with photographs, footprints and information packages. She says these can help families in their grief and direct them to external support services as necessary. These are, however, all things given to parents after facing pregnancy loss and typically such measures don’t help to raise the wider education and awareness needed.

KEMH memorial and support boxes are given to families who experience stillbirth or neonatal death.

SANDS, which began about 40 years ago, offers peer-to-peer support services to those experiencing pregnancy loss at any stage. Spokesperson Bridget Sutherland says the service offers over the phone, in person and group support as well as raising awareness and providing feedback to medical professionals dealing with pregnancy loss.

Ms Heike is the WA state coordinator for the service and says she believes the lack of public awareness about stillbirth partly stems from a lack of conversation around pregnancy loss. Despite knowing about miscarriage and stillbirth, she had no idea how prevalent it was until she was affected.

Leanne Hiser also works with SANDS in the care services team to assist bereaved parents. “I think no one knows what their journey is going to be and I think no one can expect to have loss, let alone that amount of loss but some good has come out of it as well,” she says. “I find myself gravitating more towards other bereaved parents and I think it’s given me an understanding about grief and about loss that I never would have had.”

Leanne and Chris Hiser experienced seven pregnancy losses but said they learnt new lessons in each.

Ms Hiser and her husband Chris were unaware of how common miscarriage was until they experienced three miscarriages before falling pregnant with their son Stanley in 2004. “Once I got past that 12 week mark I just assumed we were through that danger zone and this pregnancy is going to be okay,” Ms Hiser says.

The couple experienced a normal pregnancy up until 37 weeks when they say they noticed a decrease in fetal movement. Knowing this could be a sign of distress, they went to hospital but over the next three weeks were told everything was normal.

“Over the next three weeks I went to the obstetrician and back to the hospital every two to three days. That’s how concerned I was about the decrease in fetal movement. Each time I was reassured there wasn’t anything wrong and the baby is fine,” she says.

On their son’s due date Ms Hiser says she told a midwife she had not felt any movements that day and when the doctor had a look, she instantly knew something was wrong. They delivered Stanley the next day stillborn at 40 weeks.

The Hiser family experienced two more miscarriages before falling pregnant with twins a few years later. At 19 weeks and three days, Ms Hiser described the experience of losing one twin as overwhelming as she continued to carry both babies as she nurtured her one healthy twin daughter to a safe arrival.

Mr Hiser says these experiences helped him be more open with other fathers and was able to better support them because he can relate. But had still finds men are less comfortable talking about the emotional impact.

SANDS says pregnancy loss statistics have remained largely unchanged for over two decades and awareness is still low, however, with open discussions and government action the organisation is hopeful for change. Through the Safer Baby Bundle, the government is targeting this lack of awareness by ensuring new mothers are educated on the risks. Ms Sutherland, however, says more funding is needed for support organisations such as SANDS to raise awareness and professional education in metropolitan and regional areas. 

When Northern Territory senator Malarndirri McCarthy tabled the 2018 senate inquiry report she says women in regional and remote areas made up 33 per cent of stillbirth in Australia. “According to Australian Institute of Health and Welfare data, the further away women are from a major city, the higher the rate of stillbirth,” she says.

Ms Sutherland says to reach these areas, SANDS requires funding which it doesn’t currently receive from governments. In order to establish the organisation in regional WA, she says the key is to develop volunteer bases to provide the training and support.

“That’s our skillset. We go into areas that services don’t exist and build a volunteer base because that then drives the sustainability,” she says. “We do train a lot of people in regional areas who go on to provide our services and build and engage other families.”

Ms Heike agreed and says the work SANDS does to reach healthcare professionals can leave them with a better understanding and more confident as they help the next family who experiences pregnancy loss.

Ms Heike says she hopes increased government action and more open conversations will lead to a more supportive environment. “To be able to lift some of the stigma about talking about it, I think would be an amazing addition to helping not just families that have been bereaved but those families coming up who are going to have this experience,” she says.

Both Ms Heike and Ms Hiser said there was a common misconception that having these conversations will make mothers and fathers upset but wanted to assure people this is not the reality.

“I think we definitely are getting better,” Ms Hiser says. “But people don’t want to make anyone feel uncomfortable or feel sad by talking about it so I think there is a lack of understanding that it actually makes people sadder when they don’t talk about it.

“People are hesitant to talk about it because they think it’s going to bring up feelings, that it’s going to remind mum she lost her baby but really mum never forgets and you bringing it up with her and talking about it is actually reinforcing that she had the baby and that experience and love is there. You’re never reminding her, you’re not making her sadder.”