A few different things have happened this week that have me reflecting on topics such as language, the concerns of friends, why we talk about our babies that are no longer here, and society’s understanding (or lack of understanding) of stillbirth and baby loss.
So I wanted to try and verbalise my thoughts on these issues. To do so I’ll be including musical theatre (a sentence I never thought I’d write, thanks @huskiesandgin), song lyrics, quotes from friends, classic 80s films, spoken word poetry, and instances of the impact of some of the events I’ve been involved in – an eclectic mix, so strap in!
Language is a really difficult issue, for bereaved parents and for those around them – family, friends, medical professionals, work colleagues, wider society. Do you say anything? Do you not say anything? What do you say? Should you avoid mentioning their baby? If you talk about their baby, will that upset them or remind them of their child that died? I covered this to some small extent in When the world caves in, but I think it’s worth revisiting.
There’s no perfect answer to this. It’s human nature I think, certainly a British thing, to try and put a positive spin on anything bad that happens in an acquaintance’s life.
Broken up with your girlfriend? Plenty more fish in the sea.
Lost your job? Any company would be lucky to have you, you’ll find something soon.
Your baby died? Ah well, at least you know you can get pregnant/they didn’t suffer/you didn’t get to know them, that would be worse/you have other children/you can always have another.
Here’s a slide from the presentation I deliver at conferences about things we’ve heard said (not all of these things have been said to Briony and I):
With the possible exception of the bottom one, all of these things I think are intended in a genuine and positive way. Like I said, it’s in our nature to try and give people a ‘pick-me-up’, to try and put a positive slant on something and leave them in an upbeat frame of mind. That doesn’t work when someone’s baby has died.
And I came across this on Instagram (@modernloss) recently, which makes similar points:
There’s no “at least”.
Did you ever say to someone whose mother/father/grandmother/grandfather/brother/sister passed away “at least you still have your father/mother/grandfather/grandmother/other siblings”? No, of course you didn’t, because it would be crass and hurtful.
In the incredible documentary film Still Loved (click the photo below for a link to the trailer), one of the dads, Jay, says “They say everything happens for a reason. It doesn’t. It happens because it’s shit.” Never a truer word was spoken…
You can’t sugar-coat this or make it better for a bereaved parent. Any bereaved parent will tell you that they had friends who just disappeared after their child died. My friend Emma tells stories of virtually chasing people round supermarkets after her son Charlie died, so hard did some people try to avoid her. My best friend from university disappeared off the face of the earth, blocked me on social media, and ignored all my attempts to contact her. 15 years of friendship gone, in a heartbeat – or lack of one, more like.
The silver lining is that other friends step up to the plate in a way you’d never have anticipated. I’ve said before – they say you find out who your friends are when you have a baby. You REALLY find out who your friends are when your baby dies. For me, people like Jason were absolute saviours, just by being there. I wouldn’t have said we were that close before Henry died…yet by summer 2016, he was an usher at our wedding.
Just tell us you’re sorry for our loss, and that you’re there for us. And then be there.
So, dos and don’ts:
Try to fix us.
Try to make things seem better with some trite phrase or other.
Try to make our pain go away or give us advice based on an experience you may think is comparable.
Make some trite remark based on your opinion/your religion/your irritating-as-hell positivity.
Do that ‘head-tilt’ thing. If you don’t know what I mean, find a bereaved parent and ask them what the head tilt is, they’ll know.
Disappear off the grid.
Just tell us how sorry you are.
Just be there for us.
Bear with us…it’s going to be a bumpy ride.
In early March, I had a LOT of baby loss events going on, so my news feed was awash with it all. The videos from our recent #yorkbabyloss conference were starting to filter through, and Tuesday 6th was a manic day!
I spoke in the morning at King’s College London, at a study day organised by my friend Steph (@beyondbeacharity) from the amazing charity Beyond Bea. Steph’s precious daughter Bea passed away in November 2017, and already she’s set up a charity delivering training to midwives and student midwives as well as other associated healthcare professionals. She’s sourced pens, leaflets and banners and designed and launched a website – I know first hand that this sort of stuff takes some of us months to do! And she’s already out there delivering this training FOR FREE to maternity professionals and students all over the country. Her love for Bea and the legacy she’s creating for her daughter so soon after her loss is truly inspirational.
Steph’s a midwife. Even before she lost Bea she knew that the training given to midwives on bereavement was inadequate, and that the study days offered by charities were better than nothing, but also inadequate and often extremely expensive. Following Bea’s death, she’s taken the bull by the horns and done it herself. King’s College was the first time I’ve seen her programme in action and I was genuinely blown away by how good it was. Three months after Henry died, I was barely functioning. To have produced all this in such a short space of time is absolutely astounding. If you’re a midwife or student midwife in the UK reading this, and you want some training for your unit or cohort, Steph Wild and Beyond Bea should absolutely be your first port of call.
So I got the train down to London at some ridiculously early hour and then managed to struggle to find the venue, hardly surprising given that it wasn’t actually in the building it was advertised for. Luckily I came across Steph and Bea outside so she brought me in, grabbing the opportunity (again) to mock me for always being late. I did my bit – “Henry, pine cones, robins, wonderful compassionate Harrogate midwives making a difference, Our Angels” – and then shot off, leaving Steph to smash the rest of the day.
I shot off to rush back across London to the train station to jump on another train to Birmingham. Missed it by a minute, but luckily there was another one twenty minutes later. I’d been asked to present to the West Midlands Strategic Clinical Network’s Stillbirth Reduction conference.
I’d presented at their 2017 Stillbirth Reduction conference, along with my great friend Heidi, Aidan’s mum, who is the Chief Exec of MAMA Academy, a charity dedicated to safer pregnancy messaging. In 2017 it had been my ‘normal’ presentation, Henry’s Story. The parent presentation bit had been done in the morning in the 2018 event though, by my great friend David Monteith (@davidmonteith), Grace’s dad.
Grace was stillborn just a few hours after Henry in early May 2014. David and I have shared many platforms over the last couple of years, and he’s probably the most inspiring man I’ve ever met. My remit was to present the initial findings from the Saving Babies’ Lives Care Bundle, the NHS England initiative that I’d been drafted in to make everyone cry at the launch of, almost exactly two years before.
Losing a baby often takes you out of your comfort zone as you find situations everywhere that life has left you utterly unprepared for – registering your child’s death, choosing headstones, handling the awkward “how many children do you have?”-type questions. As time goes by, you incorporate many of these INTO your comfort zone – I’m entirely comfortable now, for instance, standing up in front of hundreds of people and sharing photos of my son whilst talking about the circumstances surrounding his death. I’m comfortable going on national radio stations to do live interviews and to try and speak with some authority about the enormous challenges that baby loss presents.
What I wasn’t comfortable with or properly ready for was standing up in front of 250 maternity professionals to present the findings of, well, clinical research to, well, clinicians. I feel reasonably well-versed in this stuff, as well as a layperson can be, and luckily my day job gives me some insight into analysis of clinical research. I ended up settling for, in large part, putting information up on slides and then reading it out – something I always vow not to do when delivering presentations, but sometimes needs must. I tried not to go too far into the detail to avoid getting lost in it, and finished by reminding the audience that behind every number, there’s a baby that’s died or survived, and a family that’s broken or not. Every contribution anyone makes to reducing stillbirths isn’t just lowering a statistic. They’re literally saving lives and families from lifetimes of heartbreak.
Anyway it seemed to do the trick. Consequently though, my Facebook and Instagram accounts (@pine_cones_and_study_days) were full of train journey photos and presentation photos and #babylosschat.
And then I got a Whatsapp message from one of my closest friends. I’m not going to name him but his message absolutely came from the right place. He’s looked out for me as much as anyone in the last four years.
“I don’t know how you can do it though, being able to talk and discuss [your baby loss experience] with such passion without breaking up…Does doing this make you happy?”
Now, this isn’t an uncommon sentiment or question for a bereaved parent that’s very open about their loss to encounter. But what I’ve come to realise over the last four years is that ‘happy’ is a totally subjective concept, it’s all relative.
Going through extreme trauma changes your entire perspective on what ‘happiness’ actually is – because the brutal reality is, after you’ve lost your baby, that you’ll never be 100% happy ever again, not truly. Because the world ain’t all sunshine and rainbows. It’s a very mean and nasty place…nobody is gonna hit as hard as life. But it ain’t about how hard you hit, it’s about how hard you can get hit and keep moving forward, how much you can take and keep moving forward.
There’ll forever be a piece of you missing, and you totally lose all that innocence and naivety that prompts you to say things like “everything happens for a reason” (see above). My friend Heidi, Ally’s mum, spoke at our recent #yorkbabyloss conference, and said:
“People say ‘everything happens for a reason’, well I absolutely despise and loathe that, because there’s absolutely zero reason for us to have lost our children, nothing good comes out of that – but what you can do is give something back.”
But the other thing you learn about happiness after you lose your child is that, frankly, life is too short to do things that don’t make you happy. If something in my life no longer makes me happy now, I simply stop doing it. What’s the worst that can happen when the worst has already happened?
When you’ve stood right on the edge of the abyss, your entire perspective is forever altered. But even on the edge of the abyss, the sun rises over the horizon.
I promised you song lyrics – ‘I Am Here’, by Pink:
I am here / I’ve already seen the bottom, so there’s nothing to fear / I know that I’ll be ready when the devil is near
I am here / All of this wrong, but I’m still right here / I don’t have the answers, but the question is clear
May the light be upon me / May I feel in my bones that I am enough, I can make anywhere home / My fingers are clenched, my stomach’s in knots / My heart it is racing, but afraid I am not / Afraid I am not…I am here.
We often get called “brave” or “strong” or “inspirational”, but I totally agree with my friend Juliette when she spoke at #yorkbabyloss and said:
“Many have called me strong and brave, and I respond by telling them that I feel I’m neither of these things. I just try to give my son his existence and to make him real for others – to enable him to live on long beyond me.”
So how does a bereaved parent talking publicly about their child that they love respond to the unquestionably well-intentioned question “does doing this make you happy?”
Well, based on what Heidi and Juliette said above, I answered it the only way I could:
“Yeah definitely. It’s making a difference.”
See, we can’t bring our children back. Nothing that we do can ever bring them back. But like Heidi said, what we can do is give something back. If something we do makes a difference to one family, saves one life, improves one parent’s experience, then it’s ALL worth it.
But true friends worry about us. They may not understand, but they try to, and in trying to, they worry. So the reply came back:
“Good. I just worried that you were doing it and had frozen yourself in a moment of pain for the sake of other people.”
“Don’t you worry about me mate, just look at it like this – it’s parenting…just differently.”
“As long as you aren’t a roiling mass of pain for the sake of other people then you keep going mate.”
“Nothing painful about getting to talk about my boy mate 🙂 🙂 🙂 ”
But it’s hard to make that penny drop. I think it dropped a bit for this friend when David posted about the Birmingham event and how a midwife approached him after he’d spoken in the morning and said that in 28 years of practising it had never occurred to her to let dads of stillborn babies cut the cord, but from that day forward, that aspect of her practice had changed forever. Because why wouldn’t you?
The following week I delivered a presentation at the University of Bradford entitled “What you don’t expect when you’re expecting”, and a Kurdish aspiring student midwife (Bradford 2018 cohort Shano? Fingers crossed) talked in the Q&A afterwards about cultural blocks to talking about baby loss in her community and how she was determined on the back of what I’d said to challenge them. Another penny drops, another chip taken out of the wall of silence. But it’s not a Kurdish community problem Shano, I promise. It’s a human community problem.
Every time one of our small but ever-expanding group of warrior bereaved parent speakers says something in a presentation that changes a professional’s practice, we’re changing a family’s experience for the better. And that’s an amazing thing, because it’s making a difference. But more than that, it’s our sons and daughters leaving a legacy behind.
Thinking back to the Rocky quote above, we have that choice. We can let ourselves get hit by life, and stay down. Or we can take the punches, get back up, and go again. Juliette again in York:
Which brings me on to something that was said to my Instagram friend Elle Wright (@feathering_the_empty_nest) about how she was “rewarded” through her Instagram profile for the loss of her son Teddy. Now there are lots of amazing parents out there who are publicly making a difference following the loss of their children – and there are plenty of amazing parents who are simply surviving following the loss of their children: and they are AMAZING too. Just being able to get out of bed in the morning and put one foot in front of the other is an achievement in itself. But every single one of us would give it all back IN A SECOND if it meant having our children with us. There’s no ‘reward’ on earth that we wouldn’t trade. There are no “winners” in baby loss.
But there’s no choice. Like Elle said on her fantastic recent podcast (LISTEN TO THIS PODCAST) with Michelle Cottle (@dear_orla):
But we can’t trade this one. It’s our life. So – as above – we can either choose to participate, or we can curl up in the corner.
Fight or flight? We choose fight. We always choose fight.
So we do what Heidi said, we give something back – because baby loss has been a taboo for SO long. So we talk, because if we don’t, nothing will change. Two days after our #yorkbabyloss conference, I got a message from one of the student midwives that had been there.
She’d been on her placement, and she’d seen a pregnant lady for the second time. She noticed the lady had a necklace with a handprint and her baby’s name and date of birth on. So she talked to the woman about her baby by name, making the lady smile and giving her the chance to talk about the child she’d lost. I asked her what she’d have done before, and she responded that she wouldn’t have felt brave enough, and that the first time she’d seen her she hadn’t even noticed the necklace, but that day it was the first thing she noticed.
It’s when I hear things like that, I know why we do it. That lady will have gone home walking on air that day. She’ll probably have said to her partner “you’ll never guess what happened today with the student midwife at my appointment”. Right there, the things that David & Siobhan, Emma, Heidi (@mamaacademy), Kirsty (@kirstyjemnguyen), Juliette, Jessica, Heidi and I said and did (not forgetting the amazing fundraising by my dear friends Bronagh and Matt in memory of their son Jude, which bankrolled the whole event) had made a tangible difference to someone’s experience.
Someone none of us had ever met had a better experience because of us.
A student midwife learnt how to provide better care because of us.
Because of our kids – because of Henry, because of Grace, because of Charlie, Aidan, Holly, Ben, Leo, Ally and Jude – something CHANGED. Something small to most people, but not to that student. And certainly not to that mum.
And our voices, and the voices of Elle Wright, Michelle Cottle, Nicole Bowles (@ben_and_breaking_the_silence), Hannah Pontillo (@hannahpontillo), Nicola Gaskin (@onedayofwinter) and Steph Wild in the UK, Catherine Travers (@benjamins_light) in Australia, Rachel Whalen (@ladywhalen) in America, and too many others to mention all over the world do something much more.
They shine a light. They send a message that you’re not alone. I joined Instagram late last year (I’m probably too old for Instagram, let’s be honest), and I was blown away by the community of bereaved parents that exists behind those little squares, supporting each other, carrying each other through, day and night. Here’s the musical theatre reference – my friend Heather (who’s a midwife) recently sent me a link to the song ‘You Will Be Found’ from the Broadway Musical Dear Evan Hansen. Frankly, it could be a theme song for Instagram’s baby loss community:
Have you ever felt like nobody was there? Have you ever felt forgotten in the middle of nowhere? Have you ever felt like you could disappear? Like you could fall, and no one would hear?
Well, let that lonely feeling wash away. Maybe there’s a reason to believe you’ll be okay. ‘Cause when you don’t feel strong enough to stand, you can reach, reach out your hand.
And oh, someone will coming running, and I know, they’ll take you home.
Even when the dark comes crashing through, when you need a friend to carry you, and when you’re broken on the ground, you will be found.
So let the sun come streaming in, ’cause you’ll reach up and you’ll rise again, lift your head and look around, you will be found.
There’s a place where we don’t have to feel unknown. And every time that you call out, you’re a little less alone. If you only say the word, from across the silence, your voice is heard.
So let the sun come streaming in, ‘Cause you’ll reach up and you’ll rise again, if you only look around, you will be found.
Out of the shadows, the morning is breaking and all is new. It’s filling up the empty and suddenly I see that all is new. You are not alone.
Even when the dark comes crashing through, when you need someone to carry you, when you’re broken on the ground – You will be found.
In the UK alone, 15 families a day join this club (and that’s just the stillbirth & neonatal death section of the club). I promise you at the start of their journey, every single one of those parents, every single one of those families, will feel more isolated than they’ve ever felt.
So they need to hear strong voices, telling them that “you know what, you’re not alone. This is the hardest journey you’ll ever walk, but you will survive, and we’ll be right here alongside you every step of the way.” We can’t fix it. But we can carry you along until you feel strong enough to walk.
I don’t agree with all the sentiments in Rudy Francisco’s spoken word piece “Complainers”, but I definitely agree with this bit:
“You see muscle is created by repeatedly lifting things that have been designed to weigh us down. So when your shoulders feel heavy, stand up straight, lift your chin…remember that you will survive.
When the world crumbles around you, you have to look at the wreckage, and then build a new one out of all the pieces that are still here. Remember that you are still here.”
If you don’t talk about stuff like this, it remains taboo. It remains scary (don’t get me wrong, it’s fucking scary). People don’t find out what to say. Parents keep getting isolated. Clinical practice doesn’t change. Every time a parent stands up and refuses to accept that silence, another tiny piece is chipped out of the wall of silence that surrounds baby loss.
Because as David said in his amazing spoken word piece ‘I pause, I breathe’:
“And I pause, and I breathe to shout SHE WAS REAL.
To uplift my screaming brothers and sisters – WE ARE PARENTS. No doubt. And it needs to be said that the time for the silence has shifted. So screw the taboo, let’s stand up with pride and tell the world of our grief.
Depression and guilt, I’m giving you notice. My eyes are sparkling again, cause it’s time doctors woke up and the public got broke up, cause I ain’t living in silence no more.
See the quiet inside is too loud to contain, I have to do something, I just can’t refrain. So I pause, and I breathe.
If my continued oration makes you want to sigh, remember that over two thousand babies a year didn’t have to die. For all those grieving whose pain is held up high, get ready, for here comes MY battle cry:
I AM A PARENT.
And just like my daughter I pause. And unlike my daughter, I breathe.
I pause, and I breathe.”
So that’s why we talk about them.
Because we want them to have a legacy.
Because we want the world to know that our love for them remains even though they don’t.
Because their life and their death has taught us what really matters in life.
Because we know that by sharing their story, we can improve understanding and improve care.
Because we know that if what we say and do makes a difference to even one person, then it’s worth doing.
Because we rise by lifting others.
Because lots of this journey is out of our control, but like Heidi said when she closed #yorkbabyloss:
So don’t worry about us, honestly. We’re all good. We’ve got this.
Just stand alongside us and help us break this wall down.