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My son never took a breath – talking about stillbirths can ease the pain My son never took a breath – talking about stillbirths can ease the pain
(4 months later)
There is not much that makes me feel older There is not much that makes me feel older than marking the birthday of my first son. Last week was eight years since his birth, and I remember that day in almost too much detail. The drive to hospital. The scans on arrival. The long twilight of labour. The delivery and the last wisps of hope lost as those scans were proved correct. Alexander never took a breath.
than marking the birthday of my first son. Last week was eight years since his My wife and I were deep into our specialty training – in paediatrics and anaesthesia respectively – but we had never contemplated seeing a still life of his heart on the ultrasound. In my memory, I feel my wife’s howl more than I hear it.
birth, and I remember that day in almost too much detail. The drive to hospital. That day, we were probably just one of six families in Australia going through a similar grief. Yet with all our training, we’d barely given it a thought. Stillbirth has been so neglected until recently that even definitions shift between the death of a baby after 20 or 28 weeks (and that’s just the two most common ones). Using the lower number, the Australian Institute of Health and Welfare tells us that in 2011 there were 2,220 foetal deaths. The national road toll for the same year was 1,310. Do you recall any bulletins highlighting a stillbirth rate that hasn’t fallen in decades?
The scans on arrival. The long twilight of labour. The delivery and the last At the time, one source of distress was the lack of answers. Not just the lack of answers either, but the sense that no one was looking for them. Since then there’s been efforts by organisations such as the Stillbirth Foundation Australia and the Australian and New Zealand Stillbirth Alliance to make research happen. However, a lot of this is still on the basics – agreeing on definitions; testing standardised investigation programs; describing the epidemiology. The Stillbirth Alliance lists a total of six research projects under way.
wisps of hope lost as those scans were proved correct. Alexander never took a This is not to say these aren’t good projects, or that work isn’t being done elsewhere. There have been recent updates on potential risk factors such as maternal weight through pregnancy and sleeping position during late pregnancy. A Victorian team seems optimistic that they’ll have a screening blood test for low foetal oxygen levels within five years. It’s just that these reports feel like occasional telegrams from a frontier left mostly to itself.
breath. Perhaps the reason researchers are left to work quietly alone is our collective discomfort at confronting the mess of the bereaved. Just this month, a team from Oxford University released results of the first national survey in the UK asking families about their care. It revealed tremendous variability in aftercare, describing some institutional experiences as “unacceptable”.
My wife and I were deep into our specialty After Alexander’s death, we saw the full range of people’s compassion, ignorance and sometimes fear. I have no doubt that there were times when the grim chaos of our loss made those nearby tell themselves we were better left alone. A few disappeared.
training – in paediatrics and anaesthesia respectively – but we had never contemplated seeing But when we didn’t talk, we were left to grapple with despair and guilt. I needed others to let me express my blinkered rage at those for whom it all went well or my disdain for those coping with the minor hiccups of life. More than anything, I just wanted people to talk about Alexander. My greatest fear was not the sorrow his name would bring, but the thought that he would be forgotten by everyone, left only as a secret burnished tale for a married couple. But with a few notable exceptions, we don’t share these stories.
a still life of his heart on the ultrasound. In my memory, I feel my wife’s We need everyone to face up to this and engage with families’ grief. Then people might feel the urgency to find means of preventing these deaths, and there would be support for bright researchers to tackle their questions.
howl more than I hear it. Back in that first pregnancy, like so many others we read The Little Prince aloud to my wife’s growing belly. In it, that serious little boy talks of his return to the skies and tells the aviator that his gift will be the laughter of the stars, as he’ll be able to look up and know that his young friend has returned there and is laughing on one of them. And so I listen whenever I look up to the sky.
That day, we were probably just one of six Eight years after my son's passing, my hope is that we’re closer to bereaved parents knowing that they can search the stars with those around them understanding why. Then I hope we’ll shift things, so that no one else has to look with me.
families in Australia going through a similar grief. Yet with all our training,
we’d barely given it a thought. Stillbirth has been so neglected until recently
that even definitions shift between the death of a baby after 20 or 28 weeks
(and that’s just the two most common ones). Using the lower number, the
Australian Institute of Health and Welfare tells us that in
2011 there were 2,220 foetal deaths. The national road toll for the same
year was 1,310.
Do you recall any bulletins highlighting a stillbirth rate that hasn’t fallen
in decades?
At the time, one source of distress was the
lack of answers. Not just the lack of answers either, but the sense that no one
was looking for them. Since then there’s been efforts by organisations such as
the Stillbirth Foundation
Australia and the Australian
and New Zealand Stillbirth Alliance to make research happen. However, a lot
of this is still on the basics – agreeing on definitions; testing standardised investigation
programs; describing the epidemiology. The Stillbirth Alliance lists a total of
six research projects under way.
This is not to say these aren’t good projects,
or that work isn’t being done elsewhere. There have been recent updates on potential
risk factors such as maternal
weight through pregnancy and sleeping position during
late pregnancy. A Victorian team seems optimistic that they’ll have a screening
blood test for low foetal oxygen levels within five years. It’s just that
these reports feel like occasional telegrams from a frontier left mostly to
itself.
Perhaps the reason researchers are left to
work quietly alone is our collective discomfort at confronting the mess of the bereaved.
Just this month, a team from Oxford University released results of the first national survey in the
UK asking families about their care. It revealed tremendous variability in aftercare,
describing some institutional experiences as “unacceptable”.
After Alexander’s death, we saw the full
range of people’s compassion, ignorance and sometimes fear. I have no doubt
that there were times when the grim chaos of our loss made those nearby tell
themselves we were better left alone. A few disappeared.
But when we didn’t talk, we were left to
grapple with despair and guilt. I needed others to let me
express my blinkered rage at those for whom it all went well or my disdain for
those coping with the minor hiccups of life. More than anything, I just wanted people to
talk about Alexander. My greatest fear was not the sorrow his name would bring,
but the thought that he would be forgotten by everyone, left only as a secret
burnished tale for a married couple. But with a few notable
exceptions, we don’t share these stories.
We need everyone to face up to
this and engage with families’ grief. Then people might feel the urgency to
find means of preventing these deaths, and there would be support for bright
researchers to tackle their questions.
Back in that first pregnancy, like so many
others we read The Little Prince aloud to my wife’s growing belly. In it, that
serious little boy talks of his return to the skies and tells the aviator that
his gift will be the laughter of the stars, as he’ll be able to look up and
know that his young friend has returned there and is laughing on one of them. And so I
listen whenever I look up to the sky.
Eight years after my son's passing, my hope is that we’re
closer to bereaved parents knowing that they can search the stars with those
around them understanding why. Then I hope we’ll shift things, so that no one
else has to look with me.