To educate or not to educate, that is the question

I have been thinking about writing this blog for a while now and after the launch of the new Tommy’s #SleeponSide campaign yesterday and people’s varying reactions to it I can’t hold back my thoughts any longer. When Benjamin died I was completely blindsided. I had followed all of the advice I had been given. I read all of the little booklets on listeria, preeclampsia and gestational diabetes. I knew all of the warning signs and I was armed with what to do if I noticed any of them. So when at 35 weeks pregnant Benjamin’s little heart stopped beating I was so completely unprepared. How could this happen? What had happened? How could a perfectly healthy baby die so close to full term? STILLBIRTH. It’s a word people hate to utter but it is a reality and it needs to be addressed.

When Benjamin died almost everyone I talked to knew someone who had experienced a stillbirth. Friends of friends, cousins, sisters, and aunts…the list went on and on. So while it is not common it is actually more common than people think. The Lancet, one of the world’s oldest and best-known medical journals, described it in their 2016 series on Stillbirth as an “epidemic” and “one of the most neglected tragedies in global health today”.

Stillbirth Statistics

6 babies a day in Australia[1]

9 babies a day in the UK[2]

71 babies a day in the US[3]

So why are pregnant women still not receiving education on stillbirth as standard? From many I have talked to, health professionals and lay-people alike, the same theme comes up time and time again – “we don’t want to scare pregnant women”. This response confuses me. We provide education on listeria, preeclampsia and gestational diabetes, why is stillbirth any different? Why will information on stillbirth scare a mother but information on listeria won’t? Stillbirth was not a term that I heard once during my pregnancy. Not once. I had no idea that my baby dying a few weeks before I was due to give birth was even a possibility. If I had the choice between knowing information that could help save my baby in the worst case scenario or just going along in ignorant bliss at the risk of being scared, I know what my answer would be. Education is not scary, it is empowering. I am the only link between my baby and the outside world and I believe that I should be given all relevant information to help me bring that baby into this world alive.

This week an amazing charity from the UK, Tommy’s, launched a new campaign, #SleeponSide. The campaign is in response to the publication of a fourth research study that shows a link between going to sleep on your back in late pregnancy and stillbirth. I was delighted to see more steps forward in demystifying the potential causes of stillbirth. I was, however, very surprised at the response on social media to the campaign. Many women dismissed the findings as already being “known” information while others questioned the appropriateness of the message claiming it put the blame of the death of a baby on the mother and the use of the word “stillbirth” was insensitive. I understand better than anyone how sensitive a subject this is. Being only 7 months into my journey of life without my son my heart still aches and breaks for him on a daily basis. But surely we have to try and see past our own pain to make a difference for those who come after us? Surely we have to do everything in our power to stop even just one other family from experiencing this devastation.

Change through education is possible. Norway, New Zealand, Scotland and The Netherlands all saw decreases of up to 30% in their stillbirth rates following the introduction of various educational initiatives. Australia’s stillbirth rate has remained virtually unchanged in two decades. Organisations like Stillbirth Foundation Australia and Still Aware are attempting to change this through research and education funded by community fundraising but without meaningful support from the government it will be an uphill battle.

Benjamin’s death was unavoidable. Our little man’s path had been set from the beginning and so no amount of education could have changed his fate. I say this because what I am writing isn’t about me. It is about all of us. It is about the millions of families that come after us. It is about saving the lives of babies whose stillbirth is preventable. I believe that those families deserve every chance to bring their baby home. They deserve every chance to live life without experiencing one of the most traumatic and heartbreaking events a parent could encounter, burying their child. This isn’t fear mongering. This isn’t unnecessarily scaring mothers. This is education and everyone deserves to be educated. Let’s stop the silence and start empowering women instead.

For more information please visit:

www.tommys.org

www.stillaware.org

www.kickscount.org.uk

www.stillbirthfoundation.org.au

#SleeponSide #AlwaysAsk #MovementsMatter

 

[1] Australian Institute of Health and Welfare 2015. Australia’s mothers and babies 2013—in brief. Perinatal statistics series no. 31. Cat no. PER 72. Canberra: AIHW.

[2] ONS (2016) Births in England and Wales: 2016, Office of National Statistics, London, England

[3] MacDorman, M.F., Kirmeyer, S.E., Wilson, E.C. Fetal and perinatal mortality, United States, 2006. Natl Vital Stat Rep. 2012;60:1–22.