Changing how we support parents through stillbirth

Several years ago, I was asked to cover for a colleague while they went on extended leave. Two days into the cover, I was asked to attend labour ward to see JM who had experienced a reduction in baby movements at 28 weeks.

The midwives were finding it difficult to hear the baby’s heartbeat and the moment I put the ultrasound probe on JM’s tummy, I knew. The baby was not moving and there was no heartbeat. My own heart stopped for a second as I looked into the eyes of the couple whom I’d not met before and whose pregnancy I knew nothing about. While the look on my face would have said it all, I still croaked out what feels like the most inadequate phrase in the English language: ‘I’m sorry’.

Over the next two days, I got a good look at what’s wrong with the way our health system currently manages stillbirth:

  • JM had to deliver her baby in a normal birthing suite, surrounded by the noises of happy couples and healthy babies
  • the wonderful midwives were not emotionally prepared to deal with the loss and I repeatedly heard ‘I do not know how to deal with this’

The real problem occurred when JM and her partner went home, however. There were no visits from a child health nurse or any other health provider. Their sole contact with the system was a solitary visit with their obstetrician at six weeks. Before and after this, they were left to work things out for themselves.

In this article, I shared how a recent Australian Senate Enquiry recognised the profound impact of stillbirth by committing $7.4 million annually towards stillbirth education. As mentioned here, some of those funds could, and should, be spent:

  • monitoring the size of babies in utero and comparing them to standard growth charts,
  • while also educating parents about how to monitor fetal movements.

While the above has been shown to reduce the stillbirth rate in other countries, however, we have to acknowledge that many stillbirths cannot be prevented. And, as my experience with JM showed, our system needs to be set up better to support those experiencing this traumatic event.

It’s at this point I’d like to introduce Kristy Wiegele – a One for Women midwife who specialises in perinatal loss. I’ll let Kristy share why she is so passionate about this area and what she’s done to make a difference:

I’ve always had a personal interest in stillbirth and pregnancy loss as my grandmother lost two babies. I tried asking questions about these babies, but no one really knew a lot about them.

It quickly became clear that stillbirth and pregnancy loss is a scary, taboo thing to talk about, so we don’t! This really hit home when I became a midwife. The most we learnt on the topic was a one-hour lecture from someone who told us about her story of loss. That was it! No one told us what to say, what to do or what to expect when trying to support a family through this traumatic situation. You just had to work your way through the best way you could if the situation presented itself to you. 

When I became a midwife, I saw things that upset me with regard to the care given to parents experiencing stillbirth, things I didn’t feel were respectful. It also upset me that those parents weren’t given any decent memories of their baby. The best they would get was a digicam photo printed on regular paper. This led to my husband, who is a photographer, becoming the hospital’s official volunteer photographer.

The parents my husband took photos for would eventually come to our house to collect their photos and they would end up staying and chatting for hours with one or both of us. It quickly became obvious to us that there was a massive gap in the care these families were receiving (or not receiving) because even when I wasn’t there, my husband was still being peppered with questions about counselling, funerals, support groups, what next. It seemed shameful that it was the hospital photographer who was giving these families the most support.

Then we met Lincoln’s family.

Lincoln was stillborn at 39 weeks. I’ve inserted a photo of him here as I just can’t talk about him without showing you how perfect he was. After his birth, I just got the urge to do something. I contacted a foundation in Queensland who were trying to provide every maternity hospital in Australia with a Cold Cuddle Cot. These cots have been used in the UK for about 15 years. They have refrigerated mattresses which allow parents to keep their stillborn baby with them and gifts them precious time with their baby before letting them go.

Before this, you had to visit your stillborn baby in the morgue.

I decided I would fundraise for a Cot for my hospital in Lincoln’s honour so future families at my hospital would have that gift of time. The cots cost around $4000 each and since fundraising for that first cot, I’ve gone on to fundraise over $115,000 to purchase 24 cots in WA. This has enabled me to travel all over WA, delivering cots and providing education. But the most important thing I feel has come out of this is that a dialogue has been opened up.

No matter where I have presented – hospitals, rotary clubs, mining companies, building sites (yep building sites!), universities – there has always been someone coming out of the crowd to tell their story. A story they’ve never spoken about because they didn’t think they could.

Needless to say, I’m so thrilled to have One for Women supporting my work in this area and look forward to being able to do more to help those affected by stillbirth in WA in coming years.

Thank you Kristy, first of all for being part of the One for Women team, and also for helping us change the conversations and care paradigms around perinatal loss.

We’re committed to creating a ‘safe’ space for those suffering from a stillbirth. Ideally, an area that is away from the birthing suite so there is barrier from the constant reminders of what parents have lost. Following the birth of their child, we want bereaved parents and families to be given time to spend with their child and create the memories that will sustain them through their grief.

Most importantly, we need to acknowledge that these mothers need a designated program for the postnatal period. They still need breast care, assistance with the physical recovery after childbirth and most importantly they need emotional support and attention to their psychosocial health. The current system of a solitary postnatal visit fails these women.

As one of several multi-disciplinary pregnancy clinics emerging Australia-wide, it is essential that this approach (the multi-disciplinary one) becomes the norm for the postnatal management of stillbirth.

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