Listening to the voices of parents and families

Central to our vision and objectives, listening to the voices of parents and families is a fundamental principle of the Stillbirth CRE.

'Sophie's Story', by Heidi and Ned Mules

We met in Brisbane in 2006 and soon followed a dream to move to London where, after a few years of work and travel, we eventually had our first child Amelie in 2010. In 2011, Heidi fell pregnant again and we decided to move home to have our second baby in Brisbane and set ourselves up to raise our family here in Australia.

Heidi had regular visits to our obstetrician and was considered a low risk pregnancy. Our baby hadn’t arrived by the due date of the 1st of December. We decided not to force the matter so we waited another week to allow baby to arrive naturally, after which time we would induce the birth if needed.

Our baby Sophie was born on the 7th of December 2011. She never opened her eyes and she didn’t make a sound. Sophie was stillborn.

Sophie was perfectly healthy as far as we know, but she died due to an abruption of the placenta, which cut off her life support system while she was in the womb. Everything seemed to be normal when Heidi went into labour but we only found out when we were at the hospital that Sophie had died earlier in the day.

No words can describe the feeling of dread and shock that come with being told your baby does not have a heartbeat. The next thing that comes is disbelief that this is even possible. How could our baby, who we had seen healthy and normal on the ultrasound the day before, suddenly pass away? We knew that it was possible for a baby to be stillborn, but of course we didn’t think it could happen to us because we didn’t personally know anyone who had lost a baby, it was never mentioned as a possibility by our doctors and there is generally very little public awareness of stillbirth. In hindsight, you might think that would mean that we were incredibly unlucky to have lost our baby to a very rare event, but it turns out that stillbirth is very common in Australia and its rate of incidence has hardly decreased in the last 30 years.

In the aftermath of Sophie’s death we were very lucky to have the support of our family and friends. They were all as shocked as we were to learn how common stillbirth is in Australia and how little is known about its causes and indicators. So, to give our friends and family a way to show their support and make a difference, we decided to raise some money for research by doing a 10km run as part of the Gold Coast Marathon.

Our friends, family and some generous strangers donated over $7000 in total, which we decided to pass on to ANZSA. This money was used to help pay for a priority setting workshop, where social workers, clinicians and researchers gathered to decide the most important areas to focus on to reduce the frequency of stillbirth and its impact on the community. We were invited to attend and add our perspective as parents who have lost a child.

On the back of this set of priorities, Vicki, Fran and their hard-working teams eventually won a grant to establish the CRE.

A Father’s Perspective

You may be able to imagine what a mother would go through when she loses her baby to stillbirth. But what about the father? For a father, many things are the same: the initial shock hits you like a freight train… the fear, the panic, then the grief that comes when you realise that your baby really has gone and there’s nothing you can do about it.

But then the paternal instinct kicks in. I don’t know what it’s like for a father who has lost his first born child but I think the instinct would already be there: the voice that tells you: “You’re the father – your job is to provide and protect”. But how do you protect your family from something that you can’t see coming? You tell yourself “If only there was some warning sign or some test we could have done, then I might have been able to stop this happening.”

Aside from the despair at not being able to prevent the tragedy, there’s the challenge of going on with life after it’s happened. The grief is always there and it’s often overwhelming. Still, the paternal voice says “I must protect my family. I must be the rock that others cling to.” But who am I going to cling to in my grief?

The answer is that the father can’t be a rock because a rock doesn’t feel and a rock doesn’t grieve. The father and the mother must cling to each other and ride the waves together.

If there’s a rock, it’s the extended family, friends and counsellors who will be strong and provide the support, love and compassion that you need. Another challenge for a father is to accept this support and admit that you can’t provide everything your family needs.

Changing the Future of Stillbirth in Australia

Whilst we can’t bring Sophie back, we want to do what we can to save other families from having to go through this heart-breaking experience and to ensure that the best possible support is available for those who do. For this to happen, doctors, midwives and allied health professionals need the best possible information and practices to help prevent stillbirth, and also the skills to help families to cope with their loss and educate the public about its prevalence and impact.

In the time since our fundraising effort, we have found that there are many separate organisations in Australia that are working towards some or all of these goals. Aftercare for families is gradually becoming standardised and public awareness is slowly being raised, but everyone involved would like to see this happen faster and there are too many stories of babies being lost in part due to a lack of awareness of the indicators and warning signs. We sincerely hope that the CRE will be able to help the many groups dedicated to this cause to work together and get the most out of every dollar and every hour they invest.

Ned Heidi Sophie Mules

Heidi and Ned Mules with baby daughter Sophie (2011)