What do you say when you’ve just received the worst news of your life? For me, it turns out, as my brain desperately tries to process what we’ve just been so gently told and my body starts to shake, there’s only one word that comes out. Repeatedly, apparently.
It’s probably unseemly of me to share this reaction, this I know. It’s not said in anger. It’s far from anger, nor is it being said loudly. It’s not directed at anyone. But it goes to the heart of what too many families are still experiencing, right around the country and right around the world. The shock. The trauma. The pain. The devastation. Of miscarriage. Of stillbirth. Of infant loss.
There’s that word again.
And so begins our 40 hours of hell in early 2017 that ultimately sees our son born far too soon. Too soon for a positive outcome. Too soon to have any chance.
In the months ahead, I’ll come to see our son in those hours as some sort of ‘Schrödinger’s Baby’. He was very much alive – still moving, still kicking – and yet his fate was sealed. We just didn’t know it yet.
In the weeks ahead, we’ll hear different reasons for this unwanted path we now find ourselves on. Chorioamnionitis. How do you spell that one? Incompetent cervix. Clearly whoever came up with that term did not, in fact, have a cervix. Dead baby. Is it ok to tell you to stop saying ‘dead baby’ to me? Dead baby. Please stop saying that.
And in the days ahead, we will receive so much support from organisations active in this space, as well as our hospital. Pieced together, these leaflets come to form the unwanted spin-off; the taboo baby book: What To Expect When You’re No Longer Expecting.
But in the minutes ahead?
Ironically, we’ll come to know we’re some of the ‘lucky ones’ amongst those who experience pregnancy and infant loss. We’re presented with possible causes – too many are not that lucky. We had access to world class healthcare, to protect my health and my future fertility both in those days and in the year ahead as complication after complication would arise – too many are not that lucky. And I could not have hoped for a more supportive employer as I pieced myself back together – too many are not that lucky.
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As Pregnancy and Infant Loss Awareness Month comes to a close for another year, I encourage you to consider if there are people you could check in with. 25% of all known pregnancies are believed to end in miscarriage. Six families experience stillbirth in Australia each and every day, meaning in this year alone, nearly 2200 families will leave hospital without their babies. No one is immune. It can happen to anyone. From Hollywood stars, through to Olympic heroes. To the people you went to school with, to the people you cross paths with getting your groceries. To your friends, to members of your family.
In 2016 PwC modelled the cost of stillbirth to the economy alone at more than $680m over five years, capturing direct costs such as counselling and autopsies, as well as the insidious indirect costs of family breakdown and psychological impacts on bereaved parents in the workplace. With limited funding for research, despite recent policy changes stemming from the 2018 Senate Inquiry into Stillbirth, it’s no wonder stillbirth rates have remained unchanged for over two decades.
As a new Director of Stillbirth Foundation Australia, I’m proud to be associated with an organisation working tirelessly to reduce the incidence and impact of stillbirth through research, education and advocacy.
I share my story to encourage others to feel comfortable doing the same, to play my small part in ensuring miscarriage, stillbirth and infant loss is no longer hidden in the shadows for those impacted to suffer more than they already are.
In doing so, this growing chorus of voices is what will ensure miscarriage, stillbirth and infant loss receives the attention and funding it so rightly needs.
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