First steps to your ‘new normal’

It’s been a busy few days for Henry and I.

Last Tuesday we were at Salford University as I was the first bereaved parent to be involved in their incredible bereavement simulation training days for student midwives. Effectively supporting bereaved parents is the biggest concern for virtually every single one of the many hundreds of student midwives I’ve spoken to in the last three and a half years.

When you sign up for a profession that brings the joy of living children arriving into the world every day, dealing with dead babies is HARD. Knowing how to support those parents is HARD. This is not what you signed up for – yes, it’s a tragic reality in a small proportion of cases, but the professional challenge of going from supporting the happiest moment in any parents’ lives to the worst thing any parent can ever imagine in the same shift, sometimes even in the same labour, must be truly enormous. I admire midwives so much for having the ability to spin on a sixpence and provide great and compassionate care to parents at both extremes of this most extreme spectrum – the joy of childbirth all the way through to the absolute devastation of childbirth.

These Salford students were phenomenal. Student midwives are often kept away from bereavement situations during their placements, for a variety of reasons – “it’ll be too traumatic for the parents” (not true), “you’re not ready” (not true), and (just my opinion – and it’s a bit controversial) because many qualified midwives don’t feel confident enough in their own skills in these situations to have a student shadowing them. But this cohort of warrior student midwives blew me away with their skill and compassion as they role-played through an unfolding scenario, taking turns to support ‘parents’ through various stages of the journey from finding out that their baby had died through to making memories following their baby’s birth.

I was so impressed with how they coped with the situation – even in a roleplay scenario, it was seriously emotionally charged. I wrestled with my own demons as the day unfolded too. As those of you who’ve been following my blog will know from When the world caves in, I wasn’t there when Briony was given the news that Henry had died. It’s always eaten away at me that she faced that moment without me. I know it’s irrational – it was a routine appointment until it stopped being so – but nonetheless it’s always bothered me. I should have been there. I let her down by not being there. She shouldn’t have had to call me with that news. I know that’s not logical, but it’s always been how I’ve felt.

And that was the bit I found the hardest sitting through during this amazing simulation day, the bit where the ‘parents’ – two lecturers from the University of Salford who certainly have second careers lined up as thespians if they want them – are given the worst news any parents can ever receive.

One line from the ‘mum’ really struck home with me – “ten minutes ago we were arguing about the parking space, and now you’re telling us our baby’s dead?”. Our lives can change unrecognisably in the blink of an eye. I remember Briony’s call just after 1100 on April 30th, 2014 like it was yesterday. I can even tell you which parking space I had just pulled into at Macclesfield District hospital when the phone rang. So watching this situation unfold was hard. Thank goodness that my friend Sara was sat next to me and clocked that, just for a fleeting moment, I wasn’t at the races. I think I recovered my composure to be a constructive part of the day. I hope I did anyway.

Salford bereavement day

Then last Friday I was presenting ‘Henry’s Story’ again, this time to the North West Coast Strategic Clinical Network’s conference on stillbirth and maternity safety. The North West Coast region have done amazing work on stillbirth reduction – going from being somewhere near the bottom of the league table (everything has a league table, that’s life) to near the top. I spoke at a conference in Kendal back in April and was asked that day to speak at this event – so I must have made an impression! Obviously this time I had a slightly updated presentation, and the organiser, Beth (who I hadn’t realised was now pregnant) was visibly moved by the presentation despite the fact she’d seen the bulk of it before. Afterwards she said, with half a smile, “I wasn’t ready for new content!”.

But it does help maternity professionals, I think, to have someone humanise the issue they’re there to discuss – otherwise it’s just another day of dry, clinical PowerPoints and everyone goes back to work and nothing changes. It’s easy to look at stats showing an improvement and pat yourselves on the back that the number is lower, but lose sight of the fact that the number is not zero – babies are still dying. Every number is a baby, a family, a ship of hopes and dreams smashed on the rocks of stillbirth. I hope my presentations at events like this just give people the motivation or even, dare I say it, inspiration, to go out and keep striving to drive that number lower and lower.

The baby loss community is full of incredible, inspirational parents everywhere you look. As time has gone on, I’ve learnt so much from so many of them, and I have tried to incorporate that, and incorporate some of them, into my presentations. At this event, I was privileged to incorporate in various ways my great friends David (and his daughter Grace), Heidi (and her son Aidan), Emma (and her daughter Kitty), Juliette (and her son Ben), Heidi (and her daughter Ally), and Sophia (and her daughter Ava) into my presentation, as well as Henry’s best friend Otis and his mum Natalie of course. It’s an honour to mention Henry’s friends as well as him, and I think it also reinforces to an audience that actually this IS a widespread issue, 15 babies a day ARE still dying before, during, or shortly after birth in the UK. For some reason I’ve been struggling in the last couple of weeks, and so I think this presentation was delivered with more raw emotion than any I’ve done previously. I felt my voice wobble a few times during it, which is most unlike me. I was the closing speaker at the event (brief: “give them some powerful take-home messages”), and Mr. David Rowlands, a consultant obstetrician, Chair of the North West Clinical Leaders Network, and all-round thoroughly nice bloke, stood up to close the conference after I’d finished. He could barely get his words out. So I think the unusual levels of raw emotion that I was feeling whilst speaking must have rubbed off on the room.

NWC SCN

Then Sunday was Our Angels’ annual balloon release. This is such a poignant event and a wonderful opportunity for bereaved parents from Harrogate and the surrounding area to come together with their wider family and friends and remember their precious babies. This is our fourth balloon release now, and even though I find them a bit easier now (I bawled my eyes out at our first), they’re still incredibly emotional days. Every year many of the same faces return, but tragically every year there are new faces too. And we raised nearly £1000 for the charity too which, although not the purpose of the event, is fantastic.

2017 balloon release

And then yesterday, just as I was getting back on an even keel after that emotional rollercoaster of a week, I was unexpectedly knocked completely off my axis. Those of you who follow my blogs know I am in and out of hospitals all over the north of England every day. Yesterday, as I was leaving one of the hospitals I support, I stopped at the ATM to get cash for the car park machine. The ATM was out of order, so I nipped back to my car to grab some change and then headed back in.

As I was going back through the door, I passed a couple coming the other way. In an instant, it hit me. She had a memory box in her arms. I’d know those little cream boxes ANYWHERE. And then I saw their faces – his eyes just empty, a thousand-yard stare; her face puffy like she’d been crying for days. And in an instant, I was right back to Sunday 4th May, 2014; the day we left Harrogate Hospital; the day we left our son behind for ever. And it occurred to me – everyone was just walking past them, carrying on about their business.

The most devastating tragedy in their entire lives had just descended on them, and no-one around them knew. Except me. I knew.

Unless you have one of those boxes at home (or unless you’re one of the wonderful midwives who’s cared for some bereaved parents and given them one of those little cream boxes), you’d have no idea. Just two people walking out of a hospital with a little box.

Then I thought, that was us. Walking out of the hospital, having never felt so heartbroken or so alone, with people coming and going with no idea. I reflected on that moment in our journey, and I thought – you know, that’s the loneliest moment of the whole journey. When you are still on the maternity unit, still in the bereavement suite, you’re still with your child. Yes, your child’s died, but they’re still right there with you. Everyone around you knows what’s happened to your family, knows what you’re going through. You’re in a bubble. It’s the saddest bubble imaginable, but while you’re in it, you’re protected from the world.

That moment when you leave the hospital, when you leave your precious child behind, when you first set foot back on the outside – just the two of you against the world, for me there’s no moment on the journey we’ve been on which felt as isolating as that one.

Be kindAnd I wanted to run over to this couple, hug them, tell them that no matter how alone they felt in that moment, they didn’t have to face their ‘new normal’ on their own, that there was this amazing community of bereaved parents out there who know the journey they are starting out on only too well, that are there to catch them when they stumble and fall, and there to laugh with them when they feel ready to do that again too.

That got me thinking, that couple were one of 15 families walking out of a hospital without their child for ever yesterday. Another 15 families will have walked that longest, slowest of walks today – over 100 families a week. This community just keeps on growing. Yet the silence and the taboo is breaking down slower than the community is growing. The scale of this problem is simply not understood by society.

14 other families lost their baby on May 2nd, 2014. In a remarkable coincidence, we’ve become great friends with one couple whose beautiful daughter Grace was stillborn the same night as Henry, just a few hours apart, at the opposite end of the country. Briony, Henry and I will always share an unbreakable bond with Siobhan, Grace and David now, even tighter than the amazing bonds forged between bereaved families everywhere, because of the fact that we’ve been on this path exactly the same time.

But on May 2nd, 2014, 14 other families lost their baby too, not just us.

And 14 on May 3rd, 2014 as well as Grace Monteith.

And on May 4th, fifteen more that we don’t know.

Fifteen families every day since Henry died. Every single one of the 1,239 days since Henry died.

That’s 18,585 babies that have died before, during, or shortly after birth in the UK since Henry.

18,585 families torn apart (some on more than one occasion).

And is society talking about it any more than it used to? Yes. Are we talking about it enough? No. Bereaved parents are still being told to “get over it” and asked things like “how about adoption?” or “why are you still talking about him?”.

Some parents won’t stand for that.

David Monteith won’t stand for that.

Heidi Eldridge won’t stand for that.

I won’t stand for that.

Yet some parents won’t be able to push back against that ignorance and lack of understanding that pervades our society, won’t be able to find the strength. Some parents will just be pushed back into their shell by comments like that, feeling entirely cut off from society because “no-one wants to hear about your dead baby”. That’s not their fault, that’s society’s, but they will bear the brunt of it. Families will crack under the strain of losing a baby. Friendships you thought were unbreakable will fade to nothing. People you thought you could count on will fall by the wayside.

So if you’re the couple I passed in a hospital entrance yesterday and you’re reading this, hang in there. I can’t promise you that something magical will happen to make your life good again, but you’ll get through it. Just stick together.

If you’re one of the 15 British families who started that journey yesterday, or today, or any day really, this applies to you too.

20645652_10155136578466886_1452124338_nIf you’re a friend of one of these families, don’t shut them out. Be there for them, show them kindness and compassion, but please, don’t try and take their pain away or somehow seek to minimise it. You can’t. Just stay by their side and help them along the way with love.

And if you’re like I was on April 29th, 2014, and you have or had no concept of the scale of baby loss in the UK or globally, or any idea of the impact it has on families, please, talk about it, read about it, ask about it, for every person who understands this issue more means a slightly better educated society on this issue.

Society used to talk very little about Sudden Infant Death Syndrome until a celebrity tragically lost their child. Now everyone knows about cot bumpers and optimum positions for baby to sleep in – which is excellent. SIDS is equally devastating to stillbirth, but far less common. In 2014, there were 212 babies who died tragically from SIDS in the UK, and 3,254 babies who were stillborn.

Society used to talk very little about cancer, mentioned only in whispered asides and hushed tones. Now it’s talked about as openly as the weather or the latest football scores, which normalises life for those going through it, and enables wider society to support them better – which is excellent.

We need to start talking about stillbirth and baby loss just as openly. We need mums and dads to know that it can happen to anyone, anywhere, any time. We need mums and dads to know that babies’ movements DON’T slow down in the last weeks of pregnancy, that if they’re concerned about their baby’s movements, they should call their maternity unit straight away, not have a bath, not have a cold drink, not lie on their left hand side, not wait a few hours.

The more we talk about this issue, the more aware society becomes, and the less babies will die. Yes, it is vital that bereavement care for parents whose baby has died improves, but let’s all take it upon ourselves to stop so many babies dying in the first place.

Lancet quote

So this blog post is to everybody – midwives, parents, friends, family members, and the rest of society.

But most of all, it’s to that couple who walked past me yesterday afternoon. This journey will be tough, most probably tougher than anything you’ve ever experienced – but it is not a journey you have to face alone.

I will walk it with you.

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3 thoughts on “First steps to your ‘new normal’

  1. What an amazing man you are. Stillbirth is still such a taboo subject. i lost my son David, stillborn at 26 weeks in 1982. We were told he would be buried with a spinster. When i enquired as to where he was buried i was told he wasn’t viable so he was incinerated. We where not allowed to grieve or talk about our baby or loss with friends or family they didn’t want to know. The following year i had a baby girl at 27 weeks. And 3 other prem babies due to blood clots in the placenta. 30 years later my daughter got pregnant i told the midwife all my obstetric history. We got ‘just because it happened to you doesn’t mean i will happen to you daughter. Well it did. Sophie lost Harry at 34 weeks. It was the worse that losing my own child. Having to watch your child go through just a life changing thing, to know every gut wrenching emotion you know she and her partner will have to go through. My husband and i decided that we would do everything that our families didn’t do, talk about, remember and love Harry’s memory. We still find it hard to talk about our own son and his loss. And like you i often think about the 15 families devastated today and their long journey through to normality again. Val Kemp

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