Together for change

This week Tommy’s launched its Together For Change campaign, which – if you haven’t seen the videos on social media already – is all about ending the silence and stigma around all forms of baby and pregnancy loss. Along with lots of other brilliant people who talk and write about this subject, I am in some of the videos (which you can view here). And, combining my day job with my blog job, I also put together this piece for the Mail, which I thought I’d re-publish for you all here… 

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When we talk about pregnancy, it’s often described as ‘the happy news’. From the initial coy announcement after the first scan to the beaming report from the hospital that ‘mum and baby are both doing well’, these are milestones we expect to be shared.

And share we do — it’s become the norm to post ultrasound images and bump photos online for friends and family, while two-thirds of newborns have their picture posted online within 60 minutes of delivery, according to one poll.

But when a pregnancy doesn’t make it as far as that first scan, or a baby never comes home from hospital, the world can feel very silent.

An estimated one in four pregnancies in the UK ends in loss, either during pregnancy or birth. Every day, nine babies are stillborn (babies born with no signs of life after 24 weeks) — there were 3,430 stillbirths in 2016, and over 2,100 neo-natal deaths (defined as a death in the first 28 days of life). As many as one in four women will experience a miscarriage (a loss in the first 23 weeks of pregnancy).

But despite the huge numbers affected, losing a baby remains a taboo.

Silence hangs like a veil around all kinds of pregnancy loss. It is hard to talk about — and we don’t know what to say to people affected.

Two-thirds of women who’d had a miscarriage felt they couldn’t even tell their best friend, according to a 2015 survey. Other research, conducted this year by the charity Tommy’s, found that nearly half of parents who had a stillborn baby said some family and friends avoided them afterwards.

To challenge that stigma and silence, this week Tommy’s is launching a series of powerful videos in which people share their experiences. ‘It is our duty as a society to talk about baby loss and support those who have been through it,’ explains the charity’s CEO Jane Brewin.

‘Pregnancy loss is surprisingly common and so it should be common to talk about it. Because the people it affects really do suffer, the impact on their lives can be devastating.

‘We know that it is associated with depression, anxiety and even post-traumatic stress disorder. It also has huge implications in subsequent pregnancies, which can be very difficult.’

Knowing you’re not alone — that someone else has felt the way you feel — is a salve, relieving some of the guilt and shame you can feel; the notion that you must have done something that caused your baby to die. Such emotions can fester in silence.

As I know from personal experience. In the past 18 months, my husband Dan and I have had four miscarriages, most recently a month ago. All occurred before 12 weeks, when the first NHS scan is usually done — and typically when most people choose to announce they are expecting.

There is a persistent superstition you shouldn’t tell anyone any earlier ‘just in case’. And this often means that a miscarriage, if it happens before this point, as 85 per cent do, remains a secret.

But keeping it to yourself does not prevent a loss from happening — nor does it protect you from the grief. It also cuts you off from practical support and advice.

It was only in the aftermath of my first miscarriage that I realised I’d never had a proper conversation with someone who had been through the same thing. I didn’t know what to expect now I was no longer expecting; whether my feelings were ‘normal’. I didn’t even know which hospital department to turn up at when I started bleeding that first time. As I learned, miscarriage is not necessarily something you talk about at antenatal appointments.

And yet, once I wrote about my own losses, I discovered many people I knew had had miscarriages, but felt they couldn’t speak about it.

Here, four women involved in the Tommy’s campaign tell their stories…

People don’t know what to say to you

Elle Wright, 33, writer and blogger at Feathering The Empty Nest. Her son Teddy was born in May 2016, but died shortly afterwards. She says:

You know babies die, but you don’t think it would ever happen to you. Teddy lived for three days and he was in a neonatal intensive care unit all that time.

I’d had a completely normal pregnancy and labour and Teddy was born at 6.45pm, full-term at 39 weeks three days. He was utterly perfect.

After his birth, we were transferred to the ward, but at about 2am I was woken by a midwife shaking my shoulder, telling me she had to take Teddy as he was really cold, and in that same breath she disappeared with him. I remember seeing his little arm flopping down by his side.

He was put on a ventilator and the next day, was transferred to a neonatal intensive care unit at a different hospital.

They ran every test but couldn’t identify what was wrong — it was only six months later we found out he had a very rare metabolic disorder which made him, as the doctors worded it, ‘non-life compatible’.

On the third day, they said there was nothing more they could do, that he had no function at all in his brain, he was deteriorating each day and the ventilator was doing all of the work.

We had to let him go.

That night we dressed him in a romper suit and hat and I read him a bedtime story — Guess How Much I Love You — as he slipped away peacefully.

And then we had to come home without him.

In the early days I just felt numb. It felt like every single other person got pregnant and had a healthy baby, while we were the only ones who didn’t, completely alone in our loss, planning a funeral. Everywhere I looked there seemed to be someone pushing a pram or pregnant.

I could feel a physical ache in my chest that didn’t go away for weeks, months. When I speak about it now, two years later, I can still feel it.

It was months before I could bring myself to really talk to anyone outside my closest family about what happened.

The first was my best friend, who called me the day after we got home. She was the only person I could bear to pick up the phone to. I didn’t really do much talking, just sobbed.

I would dread seeing people, thinking: did they already know? If not should I tell them; what do you say? Even those who do know often simply don’t know what to say to you.

Writing a blog has helped — and the number of people now who contact me telling me things like their parents went though it 35 years ago and still feel the pain of it, but felt they couldn’t talk about it, is extraordinary. I think we have this thing that we must not cry in front of other people and pretend that everything’s OK, even when it’s not. But it’s not helping anyone.

Two years on, my husband Nico and I talk about Teddy every day. It’s really important to us to say his name — and for other people to say it too and to ask us about him. I will quite often reference in conversation with other people things that happened when I was pregnant with him.

We did conceive again four months after he died, but we lost that baby too, at 15 weeks. We still have Teddy’s nursery ready and waiting for his younger sibling, our ‘take home’ baby.

(Elle’s book, Ask Me His Name, will be published on September 20)

In our minds the problem was to get pregnant, not to stay pregnant

Izzy Judd (@mrs_izzyjudd), 34, had a miscarriage at seven weeks after IVF for her first child. She says:

We started trying for a baby quite soon after we got married in 2012 and just assumed it would happen, but it turned out I have polycystic ovarian syndrome, which can make it more difficult to conceive.

What followed were some really tough months: with lots of fertility drugs and no success, so in the end we decided to go down the IVF route.

It was hard, but also for the first time in a very long time we felt a sense of hope. I was really lucky, in 2014, the first round worked. I was just ecstatic — from that day, in my mind, I was already a mum.

Then a few weeks later I started bleeding. We were staying in a hotel as it was Christmas and my parents’ house was full and Harry didn’t want me sleeping on an airbed, being pregnant. I woke up in the middle night, went to the bathroom and I was bleeding.

I was shaking — you try to tell yourself it’s fine, you immediately go onto Google and I tried to reassure myself bleeding can be normal. It stopped, but two days later I started to bleed very heavily and the following morning we lost our baby.

It had taken us so long to get to see those two positive lines on a pregnancy test and then it was just gone.

After a miscarriage, you feel empty. Then there’s guilt. You feel it’s your fault — had I tempted fate by forcing nature, by having IVF?

And the grief: our miscarriage was early but to this day, I still feel a loss — like I had three children.

I don’t really talk about it that often, as I’ve had two other children now, yet it still feels so incredibly raw. I’m sure lots of women must feel the same way.

I think we were both naïve about miscarriage being a possibility, perhaps because people don’t talk about it — in our minds the problem was to get pregnant, not to stay pregnant. So we were totally unprepared for it.

Afterwards, it is just the loneliest feeling. It is really difficult to know how to say to people, ‘I’ve had a miscarriage’. It never feels like the right time.

When someone says: ‘So, how are you?’ How do you explain when you’re still trying to figure it out yourself? So you don’t say anything. But bottling it up only makes it harder — you’re going to need support, not only to get over what you’ve been through but for when you’re pregnant next time.

I was keen to get straight back onto the next round of IVF and in the end we had our second cycle five months later. I was really lucky to fall pregnant again.

I remember being elated for about a minute and then just fear, which was with me all day, every day, for nine months. I don’t think we truly relaxed until Lola was born — until the moment I heard her cry. I remember thinking, I would have waited forever, just for you.

I never want anyone to feel as lonely as I’ve felt

IN the past five years Jen Ferguson, 40, has had seven miscarriages, all within the first 12 weeks. Along with her husband Al, she runs the website The Dad Network. She says:

I know people feel uncomfortable around me. I know they feel bad telling me when they’re pregnant and when they’ve had their babies.

Not talking about it doesn’t help anyone — our first miscarriage was so unexpected. Five years later, I still don’t think I’ve recovered from that shock.

It actually happened over our wedding day; we were told it was likely to happen the day before,  and then spent what should have been the happiest day of our lives dealing with that. Even now, we find it hard to look at the photos from that day. Afterwards, we had Ted, who’s three, but we’ve since had six more miscarriages.

Now, I just expect to miscarry. I prepare myself for that. The first one was just too awful — we were so excited, I can’t let myself hope like that again.

We’ve said ‘one last time’ at least four times. We were going to stop but then we had a meeting with the doctors — normally you’re meant to be offered tests after three miscarriages, but we didn’t know that and no one said anything until after our fourth. We were told there was no reason this should be happening. So we agreed one more time, but that ended in a miscarriage as well.

People have told Al he’s selfish because we keep trying — as if I don’t want another baby just as much.

We cope in different ways. Al can’t hold someone else’s new baby, whereas I instantly hold everybody’s baby. It’s like I have to push myself, to prove that I’m OK and to make sure that nobody else feels uncomfortable.

I know people are looking at me, so I go the other way and try to show the world that I’m all right, although really, I’m not.

Sharing feelings can help — although it can be hard — I never want anyone to feel as lonely as I’ve felt.

The silence from friends and colleagues was crushing

Jess Clasby-Monk, 31, runs the blog thelegacyofleo.com. Her and her wife Nat’s first baby, Leo, was stillborn in 2016, at 37 weeks four days. She says:

Shortly after I gave birth to Leo our families came to the hospital and I remember telling my mum that I was happy. I know that sounds bizarre, but in some ways I was, because we were parents and so proud.

Leo was conceived through IVF (after three rounds of artificial insemination, and one failed IVF cycle, paid for privately).

My pregnancy had been almost textbook then two days after a routine scan at 36 weeks and 6 days, I went to the maternity unit as I hadn’t felt him moving that morning. The midwife couldn’t find his heartbeat. She tried another scanner and said ‘I’ll just go get the doctor’.

Then, at some point, there were two doctors, they were obviously looking for his heartbeat and I knew it wasn’t there.

After we were told Leo had died, we came home and sat and cried. I was obviously still carrying him, but it was the strangest, alien feeling.

Two days later I was induced. I was scared but actually nothing, with the exception of Leo not filling the room with his cries, was different to what I can only imagine his labour would have been like had he been alive.

One of my favourite moments was a care assistant coming in and saying ‘congratulations!’. I’m not sure she understood our situation and had she, I’m not sure she’d have said it. But I loved her saying that; she is the only person to have said congratulations.

No one prepared us for the isolation coming home from hospital with just a memory box. When it happens, you have no context, no idea of what to expect — including other people’s reactions. You shouldn’t have to deal with burying your baby and your closest friends disappearing at the same time.

We just stopped hearing from lots of them. It’s a really hard thing to deal with, you are left without your baby and without those who should have been your support network.

I found it particularly hard with colleagues. You spend so much time with them, but really those relationships aren’t strong enough to sustain something so awful. People don’t know what to say, so don’t say anything. Nobody contacted me while I was off after Leo was born and that meant returning to work was a huge challenge.

The silence was crushing.

You don’t need to ask really personal questions, but simply asking the baby’s name can really help.

We need to get to the point where we can stop apologising for pregnancy loss being a difficult subject for people to listen to. We need to normalise it so that those affected aren’t so isolated in their grief.

•  To see the campaign videos and for support and information, as well as to share your own experiences, go to tommys.org/togetherforchange

 

A version of this article was originally published by the Daily Mail