Bereaved parents are not ratings fodder

Earlier today I was speechless with amazement at the news that our charity Our Angels’ second annual conference for midwives and student midwives, this year in partnership with the University of York Student Midwifery Society, had sold out in just 18 hours. This was an amazing outcome, and one which shows only too clearly how maternity professionals and students are crying out for better training and education in this aspect of their role.

Having recovered the power of speech, I lost it again for completely different reasons a few hours later.

Today it has been reported in the news that the Rosie Maternity Hospital at Addenbrooke’s in Cambridge has been working with a TV production company, True Vision on a documentary for Channel 4 about stillbirth.

Now you’d think, as someone who speaks out loudly and often about the need to raise awareness of stillbirth, that I’d be ecstatic about the fact that another documentary on the subject is being made, right?

Wrong.

Reports suggest that this documentary is being made with small, less-than-obvious cameras of the style usually found in voyeuristic reality TV shows like Big Brother in the corner of consulting rooms where parents are being given the most devastating news they’ll ever receive – that their baby has died. THIS IS NOT OKAY.

Furthermore, these cameras are “always rolling” and parents are not being told that filming is occurring. Hospital staff are not consenting or even advising parents that the cameras are there, save for a few A4 posters around the department. THIS IS NOT OKAY.

Spokespersons stated that the footage is not viewed without consent and if consent is not given, it is automatically deleted after three days. This means that consent needs to be obtained within three days of a couple finding out first that their child has died, and second that actually, unbeknownst to them, a TV company filmed the moment that their world shattered into a million pieces. THIS IS NOT OKAY.

Dr. Jeremy Brocklesby, the trust’s Clinical Lead for women’s services, said that the documentary intended to “un-taboo-ise” stillbirth. First – those of you who know me know I’m a language geek – un-taboo-ise IS NOT EVEN A WORD. Second – how do you destigmatise (you’re welcome, Dr. Brocklesby) stillbirth by covertly capturing the single most devastating moment of parents’ lives and then seeking their consent afterwards? If anything, this reinforces the taboo surrounding baby loss – people will watch that and gawk, not watch it to learn. THIS IS NOT OKAY.

To break down the stigma surrounding stillbirth, you don’t need to screen parents’ instant reactions to their entire world falling apart in a split second. You simply need to speak to the many inspirational and articulate parents out there who are living with this tragedy and are open and willing to talk about their experiences to break down the wall of silence that exists surrounding baby loss. Parents who come through the loss of their child are survivors, not victims, and they certainly neither need nor want to be portrayed as the latter, because that just reinforces the stereotype. THIS IS NOT OKAY.

I could even reel you off a list of people just from my own contacts who would do a sterling job of this – David & Siobhan Monteith (Grace’s parents), Heidi Eldridge (Aidan’s mum), Juliette Gaunt (Ben’s mum), Mel Scott (Finley’s mum), Kirsty Nguyen (Holly’s mum), Heidi Loughlin (Ally’s mum), Emma Lofthouse (Charlie’s mum), Michelle Hemmington (Louie’s mum), Sam Jones (Guy’s mum), Natalie Oldham (Otis’s mum), Jessica Clasby-Monk (Leo’s mum), to name just a few.

All of the people on that list (and I could go on…and on…and on) have regularly put themselves and their grief out there in the public eye to help break the silence that surrounds stillbirth. I’ve seen all of these courageous parents speak to other bereaved parents, to maternity professionals, to the general public, about their grief to help improve the understanding of others. In Baby Loss Awareness Week last month, David Monteith and I spent an hour and a half on BBC Radio Five Live being interviewed and helping with a phone-in which had many callers who shared our experience.

Only this week, with the major news about inquests for term stillbirths, I’ve seen Leo’s mum Jessica and Louie’s mum Michelle (founder of the Campaign for Safer Births) appear on national news outlets to talk about their journeys. That takes tremendous courage.

It’s no coincidence that three of the parents on that list I reeled off have already featured in a documentary about stillbirth. Not one that appeals to an audience raised on reality TV and shock headlines, that feels the need to show everyone the specific darkest moments; rather one that follows these families through their journey, the highs and the lows, and does so with compassion and empathy. If you haven’t seen Still Loved, and you want to see a documentary that ‘does’ stillbirth right – not a single shot of parents having their very soul ripped out live and in technicolour for everyone’s viewing – I urge you to rent it here.

Dr. Brocklesbury said the A4 posters in the department were ‘adequate’. They’re not. If you present at a maternity hospital with bleeding or reduced movements, the last thing on your mind is stopping to read a few posters just in case you may need to consent to some filming that’s taking place as your life travels headlong towards a brick wall at 100mph with you as a helpless passenger. Even if a poster DID catch your eye, in the absence of big cameras and TV crews, you’d be forgiven for thinking that they weren’t filming today, only to find there were little cameras tucked away watching your life fall apart. THIS IS NOT OKAY.

Dr. Brocklesbury said “Unless we get this out to the public conversation it will go no further, it will remain taboo.” You’re right doc, but we don’t need to see parents having every hope and dream they ever had crushed in an instant to initiate that public conversation – speak to Jess Clasby-Monk, speak to David Monteith, speak to Heidi Eldridge, come and speak to me. We’re already doing that. We’re already breaking the silence. How many bereaved parents did you discuss this with before you signed on for this project? Did it go through an ethics committee to agree this format? Is there money changing hands between the production company and the trust? THIS IS NOT OKAY.

Dr. Brocklesbury said “Staff are not advised to say there’s cameras in rooms but if patients mention the notice then they will happily talk about it.” That’s not good enough. Informed consent means being clear and transparent with people. Why, if you’re so confident in the ethics and morals of how you’re going about this, would you not be up front about it? “So you’ve come in for your third episode of reduced movements and you’re very worried, okay. We’ll take you through and give you a scan but is it okay if a TV company records your experience for a documentary, whether everything’s fine or not?” Well I know why you wouldn’t be up front about that. Because it’s fucking morally reprehensible. Consent by omission is no consent. THIS IS NOT OKAY.

So, picture the scene. Footage is captured of James and Charlotte (names I just made up) from Cambridge being told that their baby has died two days before his due date (like our son Henry did). Consent must be gained within three days or the footage is automatically deleted, the production company said. So if James and Charlotte’s son died on a Wednesday morning like Henry did, and was born on a Friday evening, you’ve either got to gain that consent before their son is born, or within approximately twelve hours of the birth.

That’s not sound ethical consent. James and Charlotte have just had their entire world implode. They aren’t thinking straight. They aren’t computing anything. They’re probably barely functioning at all. This is me, 20 minutes after Henry was born. Anyone really want to tell me within 12 hours of this photo being taken that they filmed us when we first crumbled without our knowledge and would we like to be in a TV documentary?

What emotional energy parents have at this time needs to be expended coming to terms with their loss and making memories with their child – not considering the complex and ongoing emotional challenges of consenting to participating in a documentary that contains footage of their broken reaction to their lives being turned upside down for ever – that they didn’t even know was being filmed in the first place. Any consent given in these circumstances is obtained manipulatively and is deeply unethical.

“James, Charlotte, we know you’re trying to come to terms with Oliver’s death and make what few memories you can with him, but we actually filmed you guys without your knowledge when we told you on Wednesday he’d died. Would you be willing to speak to a TV producer about this?”

Honestly, if someone in Harrogate had told me they’d filmed that moment in our journey without telling us, and would we like to be in a documentary while we were still making memories with our son, I’d have put them through a first floor window. THIS IS NOT OKAY.

The moment you find out your child has died is the single most harrowing moment of your life BAR NONE. Those of you who’ve followed my blog know that I wasn’t there when Briony found out Henry had died, and she had to call me to tell me. That eats away at me, that I wasn’t there for that moment, that part of our journey haunts me more than any other. So I found out stood in a car park at Macclesfield District Hospital. I can tell you which car park. I can even tell you exactly which parking space. I can tell you it was 11:01am on Wednesday 30^th April 2014. It’s the single most personal moment of the whole experience. We share pictures of our babies quite happily, we talk about them willingly. But do we want our reactions filmed without our knowledge as you first tell us they’ve died? THIS IS NOT OKAY.

I don’t know if this is legal or not. I do know if it’s moral or not – it’s not. I do know if it’s ethical or not – it’s not. It would appear that the Chief Exec of the charity Birthrights, Rebecca Schiller, shares my concerns, when she talks of the “moral and legal questions to be asked” and the need for more information to establish “if they are infringing women’s rights when they are giving away very, very private information.” – I would add “men’s rights” as well. Stillbirth isn’t just a mums issue, it’s a dads issue too. Stillbirth is an every person issue. THIS IS NOT OKAY.

Channel 4 said “this is a sensitively-made [no, it’s not], observational documentary about…stillbirths told from the view of parents as well as interviews with leading consultants in the field. The aim of the programme, fully supported by senior medical staff at Addenbrooke’s Hospital, is to demystify stillbirth and remove the taboo surrounding the difficult subject matter.”

It’s insightful to me that they point out that it’s supported by the medical staff, but don’t say that it’s supported by local bereaved parents, or by SANDS, the national stillbirth charity, or that bereaved parents have reacted overwhelmingly positively to being filmed as everything they thought they knew about life and about parenting crashes on the rocks of stillbirth. THIS IS NOT OKAY.

I will always support anything that seeks to address the taboo surrounding stillbirth in a compassionate, empathetic, and ethically considered way. If you want to tell the story of stillbirth from the view of the parents, come find us once we’ve survived the early stages of this journey, don’t hook your claws into us when we don’t even know how we’re going to survive the day. I’ve even given you a list of parents to speak to.

If you want to gain broader insight, speak to Sands, speak to Tommy’s. If you want to have interviews with leading consultants in the field, don’t go to Addenbrooke’s, which has a rather high stillbirth rate. I’ll give you the contact details for Professor Alex Heazell, the Clinical Director of the Tommy’s Stillbirth Research Centre at St. Mary’s Hospital, Manchester. If you want to speak to a leading consultant in this field – he’s your man.

By all means, join us in seeking to break the silence surrounding stillbirth. For goodness’ sake though, don’t do it like this. THIS IS NOT OKAY.

Dr. Brocklesbury, Cambridge University Hospitals Trust, True Vision production company, Channel 4 – to all of you. Please. Knock this well-intentioned but utterly ill-conceived and immoral project on the head now, before you do any more damage. IT’S NOT OKAY.

And to any of you out there who think there’s a demand for a documentary about stillbirth that gives a meaningful but not voyeuristic insight into what it means to bury your child like my wife and I have – I agree. The good news is: it already exists. Find out more here.