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.
My wife and I were deep into our specialty training in paediatrics and anaesthesia respectively but we 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.
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. Did you see any news 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 major 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 appears to be 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 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. Some realised that saying they had no idea what to say captured a lot. A few disappeared.
But when we didn’t talk we were left to grapple with despair and the guilty aftermath. I would have been better off had those around 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’d be support for bright researchers to tackle their questions.
Back in that first pregnancy like so many others we read aloud around my wife’s growing belly. We read The Little Prince. 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 when I look up at the sky.
Eight years later, my first 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.
PS This post is a very slightly altered version of an article The Guardian were kind enough to put up here. There’s some very generous people who share stories that matter to them in the comments (yes, you can actually read the comments).
It may seem a bit left field given the other posts on the blog. The loss of Xan has many ongoing impacts and one of those is a passion to support researchers asking questions that are vital to preventing people collecting their own stories, in whatever area, that they’d do well without.
Finally, I have the space here to mention that there is a hero to this story and that’s my amazing wife. Actually she’s the hero of most of the stories that get to the blog, there’s just never enough space to do that justice.