Why does research scare people?

I really want to get a balance with this blog (and its new little brother, pine_cones_and_study_days on Instagram) between documenting our story and spreading awareness & helping to ensure that there’s good information out there to help reduce the number of families walking in these uncomfortable shoes that you can’t take off.

On Monday I was interviewed on BBC Radio York about the new research that was published this week showing that pregnant women sleeping on their side in their third trimester significantly reduces the risk of a stillbirth. What’s REALLY important to stress about this research (and the researchers were at pains to stress this in every single interview they gave) is that this relates to the position mums GO TO SLEEP in (which is the sleep position held the longest). If you wake up on your back, don’t panic, you haven’t harmed your baby, just roll back onto your side and go back to sleep.

Here’s the interview, first with Professor Heazell who headed up the research, and then with me:

I know the amazing team at the Tommy’s Stillbirth Research Centre at St. Mary’s Hospital in Manchester (shout out to Professor Alex Heazell, who headed up this study) pretty well, so I’d done my homework beforehand and felt like I was ready and prepared to talk about our experience and the new research.

What I hadn’t considered was the prospect of being asked what difference this knowledge would have had on Briony’s pregnancy with Henry, and suddenly there I was, effectively being asked if I thought that Briony sleeping on her back (she couldn’t sleep on her side because of the big frame on her leg you might have seen in Blissfully Unaware) had caused Henry’s death. I sort of deflected the question and tried to bring the focus back onto the future and the positive impact the research will have.

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I’ve watched closely as this research has been discussed across social media this week. The response to it has been, in the main, overwhelmingly supportive, but there have been some negative comments saying it’s “blaming women” or torturing mums who’ve already suffered a stillbirth.

Medical research isn’t about ‘what-ifs’ or about second-guessing the past. It’s about making progress for the future. No research published in 2017 will change the fact that Henry died in 2014. This isn’t about whether this has been a factor in stillbirths in the past. It’s about it being a controllable risk factor to prevent some stillbirths in the future. Or, as my wonderful friend Jess said so perfectly on her Instagram page, The Legacy of Leo, earlier this week:

“Progress – the babies who didn’t get the chance to have their voice, helping to make sure that others do. That’s all I want.”

None of us WANT to be in this club made up of parents who hold their children in their hearts instead of in their arms. But in it we are. What’s important to so many of us who are stuck in it (I’ve said before, it’s like the Hotel California, you can check out any time you want but you can never leave) is helping to ensure that other parents DON’T join our club. Go away, we don’t want you (we’ll always take you); not accepting any more members (we’ll accept you); doors closed (our doors are always open); full to capacity (we’ll always make room for more); no room at the inn.

We’re going to get new members. We all know that – you see, when your baby dies, you lose your innocence and blissful naivety about pregnancy and babies and, well, life in general really. I’m the first to admit that, as a first time dad, my logic went “12 week scan, tick; 20 week scan, it’s a boy; plain sailing from here”. If I knew even a fraction of 1% of what I know now about placental function, fetal movements, gestational size and customised growth charts, and now sleep positions, maybe I’d have had some clue that might have made a difference to us. But I didn’t. If you’d asked me about stillbirth at the start of the week that Henry died, I’d have looked at you like you had three heads. But you see, now we know about it, us parents who live it every second of every day. Now we know that 15 families a day join this club in the UK alone – 10 stillbirths and 5 neonatal deaths EVERY SINGLE DAY.

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So we talk, because we want people to be INFORMED. We know that research like this can have a triggering impact on us. Yet, we talk about it anyway. Because if ONE woman sleeps on her side this week when last week she’d have slept on her back, and her baby lives rather than dies, it’s worth it. If we can do something that leads to one less family having to bury their child, then it’s worth it. I know some of the mums and dads who’ve been involved in the media focus on this research this week have found it emotionally draining and upsetting hearing the backlash against it (thankfully a small proportion of the overall response) – and you see, we KNEW there’d be some backlash. But we do it anyway.

I understand the argument that we don’t want to scare mums. Here’s the thing though – babies dying is scary. Stillbirth is FUCKING SCARY.

That doesn’t mean “not talking about it” is an option. Would I rather have had some fear and had the chance to do something that could have saved our son, or would I rather have been blissfully protected from it and had to bury him and for my Sunday mornings to be visiting his grave rather than taking him to Rugby Tots?

Do we think we shouldn’t talk about the fact that smoking causes cancer because cancer is scary? Closer to home, lots of education has been done relating to safe sleeping for babies to massively reduce SIDS rates – should we not talk about that because the prospect of your baby dying from cot death is scary? No. Absolutely not. And this is no different.

It’s a no-brainer.

Research like this is so vital. It’s simply not acceptable to say that difficult subjects shouldn’t be discussed. Women and families have a right to know if there are things they can control that can reduce the risk to their unborn babies.

So MASSIVE credit to Prof. Heazell, his team, and everyone at Tommy’s for conducting this research and building an awareness campaign around it, and for doing so in an empathetic way designed to make clear that this isn’t about scaring mums, nor is it about ‘blaming’ mums who’ve lost in the past.

And to Michelle from Dear Orla, Jess from The Legacy of Leo, and every other loss mum who put themselves out there and publicly relived your grief this week to advance this cause, I salute you.

For more information on the #SleepOnSide campaign and the research that underpins it, go to the Tommy’s website or view this video:

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