As bereaved parents it’s not often we get an opportunity to have our voices heard. It’s even less often we get the opportunity to contribute to some meaningful change around Stillbirth. So to get both of these together is pretty special.
In Australia, a Senate inquiry into Stillbirth Research and Education has been opened. The Government is finally giving us an opportunity to help change stillbirth rates in Australia. They want to hear from us. They want to hear our stories and our experiences.
I know that this can be daunting. A lot of the time telling our story means reliving some of the most painful moments of our lives. But what if we can change the outcome for someone else who comes after us? What if we can prevent them from having to leave the hospital with empty arms? What if we can help save their baby’s life?
For me, it’s worth it. I urge you with all my heart to pick up your pens and tell your story. To try and help I’ve included tips on completing a submission below.
Our voices can help to shape the future of stillbirth in our country.
Every voice counts…every story matters.
To make a submission click here. Be quick, submissions close Friday, 29th June 2018.
Stillbirth Research & Education Inquiry
I included an introduction at the beginning of my submission that highlighted the following areas:
- Mine was an individual submission based on my personal experience of stillbirth.
- As part of my submission, I would provide a background to my story and then address the individual terms of reference that they require.
- I included bullet points highlighting the main areas that I would like the Australian government to address. Examples of these include:
- Stillbirth education should be provided to all pregnant women as standard including national campaigns to create awareness of the importance of monitoring your baby’s movements and other stillbirth risks
- Stillbirth research needs government funding to lower the unacceptably high stillbirth rates in Australia
- Standardised bereavement care across all hospitals in Australia including specialist bereavement suites and bereavement midwives
- Creation of specialist “high risk” subsequent pregnancy care after a stillbirth for each state within Australia
- MY STORY
In section 2 of my submission, I wrote about my beloved Benjamin. People are so used to hearing statistics when it comes to stillbirth that they sometimes forget that there is a little baby behind each number. And with each baby, there is a Mum and Dad and extended family whose lives have been torn apart. I think it is really important to try and paint this picture for the Senate Committee. We need them to understand the impact losing our children has had on our lives.
While making sure to include specifics of when Benjamin died (what gestation) and the fact that no cause of death was found I also included the following details:
- My journey to getting pregnant – for those of you who are familiar with my story you will know that we fought extremely hard to get pregnant with Benjamin. He was our IVF miracle baby and very much loved and wanted.
- My pregnancy – I had a very healthy and low-risk pregnancy. Benjamin died out of the blue with no warning just as I had finished work and started my maternity leave. He was snatched away from us only weeks before his scheduled c-section date. I feel that it is very important to give the committee a feeling for how, even before birth, we have hopes and dreams for our babies. We have our whole lives planned out with them. They are a very important part of our family even before we hold them in our arms. I also included a photo of Benjamin. To me, Benjamin is not an abstract concept, he is my son. By seeing a photo of him they can see that he was a perfect little baby like anyone else’s. The difference is, we didn’t get to bring him home.
- The impact on my life of the stillbirth of my son – I’m not going to lie, I didn’t sugarcoat this part of my submission. Losing Benjamin completely devastated me. For a long time, I didn’t think I would be able to live again. I described the impact on me, returning to work and the ongoing anxiety I deal with as a result of his death.
- TERMS OF REFERENCE
This seems to be the part that is putting off a lot of bereaved parents from submitting to the Inquiry. Most bereaved parents who have made submissions to the inquiry have focussed on the terms of reference (e), (f) and (g). These are usually the most applicable where you can apply your own experience to what is specifically being asked. I have also commented on (b) and (d) but this is completely up to you and again, dependent on your experience. If you don’t have anything to write in relation to a specific term of reference, just leave it blank.
a. Consistency and timeliness of data available to researchers across states, territories and federal jurisdictions;
I had no specific comment on this term of reference & therefore left it blank.
b. Coordination between Australian and international researchers;
This is not one of the main terms of reference that bereaved parents have commented on for the Inquiry.
However, I like to try and keep up to date with the latest stillbirth research and as such, I am familiar with overseas organisations like Tommy’s the baby charity in the UK. As part of my submission, I suggested coordination between Australia and international researchers like Tommy’s.
c. Partnerships with the corporate sector, including use of innovative new technology;
I had no specific comment on this term of reference & therefore left it blank.
d. Sustainability and propriety of current research funding into stillbirth, and future funding options, including government, philanthropic and corporate support;
Again, most bereaved parents who have made submissions to the inquiry have not focussed on this term of reference.
However, I believe the key to progressive and cutting-edge research in the area of stillbirth is to have government funding. At the moment there is undue pressure on bereaved families to raise large amounts of funding privately. Currently, there is NO GOVERNMENT FUNDING for stillbirth research. This is needed if we are to lower the unacceptably high rates of stillbirth in Australia.
e. Research and education priorities and coordination, including the role that innovation and the private sector can play in stillbirth research and education;
For this section, I listed areas that I would like to see both research and education in relation to stillbirth. As bereaved parents, we know better than anyone the holes in education and healthcare when it comes to Stillbirth. You don’t need to be a healthcare professional to speak up for what is needed. Remember – we are the patients after all.
Examples of education priorities are:
- On the ground education through midwives, pre-natal classes and obstetricians
- National education campaigns
- Key education areas:
- The importance of getting to know your baby’s movements (#MovementsMatter – Tommy’s the baby charity, UK)
- The importance of going to sleep on your side in the 3rd trimester (#SleepOnSide – Tommy’s the baby charity, UK)
- Empowering women to always ask and talk to their health professionals about their health concerns during pregnancy (#AlwaysAsk – Tommy’s the baby charity, UK)
Examples of research priorities are:
- Better identification of causes and factors contributing to stillbirth
- Developing interventions, technologies and other methodologies to prevent stillbirth
I also described some of my own personal experience whereby despite a full autopsy no cause of death was found. The lack of stillbirth research majorly hampers any efforts to establish the cause of death. This also leads to huge levels of stress and anxiety for subsequent pregnancies.
f. Communication of stillbirth research for Australian families, including culturally and linguistically appropriate advice for Indigenous and multicultural families, before and during a pregnancy;
We know better than anyone about this term of reference.
Did you receive any education about the risks of stillbirth when you were pregnant? From your midwife, obstetrician or pre-natal classes? Did you understand the importance of monitoring your baby’s movements? The answer for me to all of these questions was no, not once.
In this section, I discussed how I received no education on the risks of stillbirth in the 35 weeks I was pregnant. I also discussed how I was educated on other “scary” things like listeria, preeclampsia and gestational diabetes…just not stillbirth.
I also discussed how on the morning my son died I referred to my pregnancy “bible” that my midwife gave me to see if it mentioned what I should do if I stopped feeling my baby move. To my subsequent horror, I found out that the information in this booklet was WRONG. It told me to wait 2 hours before I called the hospital. You should call the hospital straight away if you notice a change in your baby’s movements. This is completely unacceptable.
In Norway, New Zealand, Scotland and The Netherlands they all saw decreases of up to 30% in their stillbirth rates following the introduction of various educational initiatives. I urged the government to institute standardised stillbirth education for all pregnant women in the same way it is done for listeria, preeclampsia and gestational diabetes. I also urged for the creation of national stillbirth education campaigns around getting to know your baby’s movements and other stillbirth risks e.g. sleeping on your side. Obstetricians and midwives need to start getting comfortable with discussing stillbirth with their patients and the fastest way that this will happen is if the government institutes it.
g. Quantifying the impact of stillbirths on the Australian economy; and
In my submission to the Inquiry for this section I referred to the study commissioned by Stillbirth Foundation Australia entitled “The Economic Impact of Stillbirth in Australia” which can be found online here. I stated that this study aligns with my experiences and has my full support.
I also went on to describe the impact my son’s death has had on my return to work including extensive unpaid leave required as well as intermittent time off due to anxiety/panic attacks.
In addition to this, I described the financial burden of psychological care in the form of counselling.
h. Any related matters
This section can be used to describe any other related matters that you would like to bring up.
Examples of these types of things could be:
- Care in a subsequent pregnancy after stillbirth – the need for specialist subsequent care facilities in each state in Australia for women with a previous stillbirth. A successful model like the “Rainbow Clinic” run by Tommy’s in Manchester, the UK, where they have a zero repeat stillbirth rate, could be instituted here in Australia.
- Increased psychological support for bereaved parents – increase the number of Medicare-supported counselling sessions for bereaved parents.
- Labour choices for women in stillbirth – investigate the viability of giving women the choice to have a natural birth or a c-section when a child will be stillborn. This involves understanding the psychological implications of forcing a woman to deliver naturally vs c-section.
- Standardised Bereavement Care – Standardised bereavement care with all hospitals being required to have a bereavement suite with specialist bereavement midwives.
The above is a guide only to some of the things that can help you to form a submission for the Senate Inquiry. The important thing when completing your submission is that you share your personal experience and what did/did not work for you and what you think could help going into the future for stillbirth research and education. Please do not feel any expectation or obligation to include any of my points above – they have been provided simply as a helping tool if you feel you need it.
There are no right or wrong answers – there is only your experience.
For more information on organisations who focus on stillbirth research and education please visit my Research, Info & Support page. This page also includes links to support organisations if you feel like you need to talk to someone after reading this.