Progress at a Cost? | Defeating Stillbirth

This past week I’ve taken a step back from the blog and all things associated, on purpose, for the first time since we started this little corner of the world. It’s been a well needed break and has created some worthy food for thought that I’ve struggled to compose in my head and make sense off.

I decided to come off most of my social media and avoid my blog off the back of the mixed response to the #SleepOnSide campaign from Tommys. I needed to not centre myself in the debates surrounding it… I knew I was perhaps too passionate, and I know all too well that my passion for things can often get misinterpreted and this is the last thing I wanted to happen around such an important message.

I’ve seen and read a variety of responses, inside and outside the Baby Loss community. I can relate to many, appreciate some, and am generally confused or frustrated by the rest. I don’t wish to respond specifically to them – everyone is entitled to their own emotional response to something out there. Equally, the varied responses allows for some insightful reflection on the understanding of stillbirth and pregnancy health, and the mainstream approach to prevention vs so called ‘scaremongering’.

If you haven’t read or seen the campaign, please have a look at my previous post here. Should you have additional queries, responses or curiosity I would highly recommended reading the FAQ from Tommys here which addresses the main responses, as well as this Facebook Live session with the lead researcher Prof. Alex Heazell.

What the campaign and the response to it did make me ponder though, was what are we fighting for in all of this? What does progress look like for people? What if progress has to be at the expense of peoples grief and emotional well-being? What’s the balance? And how can we strike it? Do we need to strike it?

Progress for me comes in many forms :

• It’s in the increased dialogue around Baby Loss as a whole
• It’s in friends and family having the confidence to actually stick around bereaved parents and not disappear with seemingly ease
• Its in hospitals being equipped to provide consistent Bereavement care to all families
• It’s in all hospitals being able to deliver this level of care and irradicating postcode lotteries
• Its in Bereavement Midwives working more than 2.5 days a week
• It’s in Bereavement training lasting longer than one hour
• It’s in Doctors not referring to your stillborn child as “it” or “the stillbirth” or “your previous situation”
• It’s in medical staff delivering consistent health messages that support the Saving Babies Lives Care bundle
• It’s in Midwives not telling you to drink orange juice for reduced movement concerns
• It’s in families having full informed consent to health and birth decisions
• It’s in babies not being harmed at birth resulting in injury or death
• It’s in babies not dying due to preventable infections
• It’s in Bereavement wards having tissues
• It’s in high levels of Bereavement care existing from Early Pregnancy Units onwards
• It’s in employers being equipped to cope with Bereavement and support safe return to work in order to protect longevity in employment
• It’s in less parents getting divorced as a byproduct of grief and trauma
• It’s in high level Bereavement care extending to after discharge
• It’s in adequate emotional and psychological support being available to parents
• It’s in the acknowledgment of the wider families grief
• It’s in the understanding that Baby Loss is complex and comes in many forms
• It’s in the improved understanding of the placenta and its role in pregnancy
• It’s in the improved understanding of the varying risk factors that intertwine in stillbirth
• It’s in the compassion and flexibility provided in pregnancy after loss antenatal care
• It’s in parents not having to suffer three miscarriages before anyone will even consider giving them answers
• It’s in better management of antenatal testing and greater compassion in the subsequent conversations
• It’s in improved layout designs of hospitals so those delivering a stillborn baby don’t need to hear babies being born alive
• It’s in the taboos within the taboos being spoken about
• It’s in so many things. Medically, emotionally, physically.

But we need research to do so many of these things. Progress was afforded to us – not necessarily in the things in the list above, but in other things. In the opportunity to hold our baby. In the opportunity to write about it. In the chance to dress him, name him, and take photos. In the allowance to know where our baby is buried. To have his grave marked. To have him spoken about with friends and family. And I will be thankful of this progress every single day of my life.

Progress and research also allowed us to know more about why Leo might have died. To ensure high levels of care for Eli. To have a centre funded by Tommys providing top level antenatal care – for his placenta to be monitored and the blood flow checked. To have health care professionals accept and acknowledge our grief and the impact that has on us in a subsequent pregnancy and in parenting. It allowed us the opportunity to conceive. Together. As parents. To both be on their birth certificates. Progress is all around us. Daily. And it’s given us so much.

So what do I want from the progress to come? I want that list to become true (and so much more) for the parents of tomorrow. For the next generation.

In her piece discussing Stillbirth Stories, Bel Mooney said “if you had told me in 1975, when I wept so bitterly for my lost baby, that 42 years later there would still be widespread ignorance, even indifference, on the subject of stillbirth, I would have shaken my head in disbelief…. If a crystal ball had foretold that in 2015 Britain would rank 24th out of 49 high-income countries in the number of stillbirths (there are 3,600 stillbirths every year in the UK, and one in every 200 births ends in a stillbirth. It is 15 times more common than cot death); that Croatia, Poland and the Czech Republic all have better stillbirth rates than the UK; that mothers in Iceland are half as likely to suffer a stillbirth as we are . . . then I would surely have raised my fists and howled, not in grief, but in rage.”

This really spoke to me when I first read it and it still does now. To think that this woman was where we are today, and looked to the future with hope of progress in the aim of healing her broken heart and the future hasn’t delivered in the way that she hoped. I’m glad that there has been progress, notable progress, yet not to the level that people hoped a generation ago.

So what do we hope for the next generation on from us? How do we want to look back on the work we all do in forty years time? What things are going to be the game changers? Stillbirth is far too complex a domain to have the single impact as the Back to Sleep campaign did on SIDS – however, a combined effort from all angles could just have that impact. We must believe it’s possible. The #SleepOnSide research and campaign is a small part. Small parts add up. And I for one, am grateful that our generation has the likes of Prof. Alex Heazell, his team and Tommys, to allow those small pieces to come together – there is so much potential in people like this (no pressure!).

This progress won’t save our babies, but it’ll save their babies. And for me, it’s always been about that. The relentless, often soul destroying fundraising, counting pennies and thinking up crazy ideas, opening my heart and soul, and backing every single campaign that just might help and placing my own self care or grief to the side.

At our post mortem appointment for Leo, I remember still that our consultant didn’t understand why I was interested in wider policy and procedures because it didn’t relate to Leo, it wouldn’t have saved him. But Leo was already dead. I knew that couldn’t change. But he could still teach. But only to those willing to listen to him. To listen to all of them. They all have a lesson in them. Often several. And as I said the other day, progress is about the babies who never had a voice, helping to ensure that other babies get the chance to have one.

The only thing I could have asked for after Leo died, was for him to be the last, for his legacy to be stopping any parent knowing this pain. But he wasn’t. And he isn’t. There were more. And there are sadly, so many more to come. Which means, we must keep making progress. No mater how small. No mater how triggering.

Progress will inevitably come at a cost – a cost to those who it was too late for. It will come at a cost to our own grief and emotional well-being. It may shock us to our core, take us back to ‘those days’, leave us questioning and full of uncertainty. Some progress will hurt more than others. Some progress will be more relevant to our own experiences than others. But progress has to happen. We can do what we can to minimise the impact on us as bereaved parents – take part in focus groups, help with informing organisations about our viewpoints, share our voices, utilise self care and helplines, learn our own grief – but we have to allow progress to happen, surely? Despite the pain it can cause.

One day we may discover causes of stillbirth that we don’t want to hear. Maybe an answer we’ve been waiting for. The explanation in the “unexplained”. An unpicking of all the hidden unknowns to baby loss. It won’t just be one discovery. It will be many. Over time. The complex perfect storm in all its guises will start to be understood. And with that, it can be beaten. But what if we don’t want to discover that knowledge because it’s too painful for us? What then? What happens to progress?

– J x

Image : from the Remembering Baby exhibition