In April 2019, I was nine months pregnant ready to give birth to my first child. I was 40 and had conceived through IVF so considered high-risk, but had a reasonably normal pregnancy until a couple of red flags right at the end and I was being closely monitored. It was decided we would induce and I was put on a heart trace monitor. Everything was fine then, but when I arrived at hospital the following morning to be induced, my baby’s heart had stopped beating.
As a nation, we’re better at talking about miscarriage than we used to be. My friends have been having kids for the best part of 20 years and I know lots of them have had miscarriages because sadly, it is common. But what I don’t think we’re so good at, is talking about stillbirth.
As a result, when you get to being full-term, ready to give birth, and your baby dies, you don’t realise that it’s happened to other people too. Actually, the statistics are shocking. There are eight babies every day in the UK that are stillborn and if you include neonatal deaths that goes up to 14 babies a day. We’re looking at 3,000 families a year being plunged into these really desperate circumstances of grief. And yet, we don’t talk about it.
After my baby died, I very quickly realised I wasn’t alone in my experience, but also that people didn’t really know what to say to me. The experience was so foreign to them, such an inconceivable grief, many people got it right but others stumbled across their words or said nothing at all. I have heard many stories of people saying hurtful things, unintentional but hurtful none the less. I get it, we’re British and have a natural fear of not wanting something to be ‘awkward’, but that fear is driving the stigma of talking about baby loss and ultimately, women are paying the price.
That’s why I decided to launch my campaign, No Words, this summer. It was created to do two things. First, I want to raise awareness of the statistics so people can see just how much this is happening. Hopefully then, the level of conversation will increase and in talking about it more, people will feel more comfortable providing support for the families that, very sadly, will follow mine in suffering from baby-loss.
There is no word for a parent who outlives their child.
Second, we need a word for being a parent who outlives their child. We know and understand ‘Orphan’ and ‘Widow’, they’re common language we can use comfortably. But, if someone asks me if I’m a parent, I don’t have an answer for them. Saying yes results in me having to tell a very sad story, but saying no isn’t true. If I just had a noun that I could use, it would make it so much easier.
No Words encourages people to find the words to talk about baby loss, but also highlights the fact that there is no word in the English dictionary for it. Recently, I’ve spoken to Countdown’s Susie Dent who confirmed this fact and I’ve begun exploring options we can use but that’s the start of a very long process. Right now, we’re focusing primarily encouraging conversation, and crucially, not just telling people to ‘Say something’ but helping them understand what to say too.
I was really lucky, despite the fact many people didn’t know what to say, my family and friends were amazingly supportive got it really right in the most part. But as I’ve become more connected to a community of people with similar experiences, it’s apparent that many people don’t have that.
One of the main things people get wrong is trying to ‘fix’ it. They’ll say things like ‘At least you know you can get pregnant’, ‘At least you’re young and you can try again’ or ‘There must have been something wrong so it’s just natures way’.
It’s a very understandable response to a traumatic experience, to want to make someone feel better. But it would be far better to just validate their grief than to try and offer a kind of silver lining. You just want someone to say ‘You know what, this is shit and I can’t say anything that’s going to make this better, but I’m here for you and if you want to talk about your baby today I’d love to talk about them.’
The other key thing is that it’s better to say something rather than nothing. I did have some friends who were so stunned by what happened that it took a very long time for them to even say anything to me about it. Losing a baby is already a very isolating experience, not talking about it at all only perpetuates that feeling of being completely alone in your grief.
If you’re not sure what to say, just ask a question.
The best advice I can give is to take your lead from the parents, and if you’re not sure, just ask a question. It’s better to say ‘Would you like to talk about your baby today?’ than to just pretend their baby never existed.
You can also write down your words if you’re really stuck. I received so many thoughtful cards and pieces of writing, flowers and other gifts. That meant a lot because it showed the people closest to us were thinking of us. But it doesn’t even have to be a gift, a simple text message that says ‘There are no words I can say to make you feel better but I want you to know I’m thinking of you.’ That’s all it takes to just let people know you care.
Losing a baby is something you carry for life and PTSD, post-natal depression and post-natal psychosis are all far more likely to happen to a mother who has lost her child. It doesn’t matter if you lose your baby at four weeks or 40 weeks, until such time as we’re able to have an open conversation with a friend, employer or other parents about baby loss, the isolation that drives people further into their trauma is not going to change.
But the time is now to start changing that, and I hope my campaign will play its part. We’re selling ‘No Words’ t-shirts(and other products to come) that, as well as £5 of each sale going to charity, instigates the conversations that need to be had. Several people have chosen to share their own story of loss for the first time by wearing one of the t-shirts and posting a selfie on Instagram to talk about their experience. Some are even stories from the 70s and 80s when women really weren’t encouraged to talk about baby loss, and now they feel like they finally can.
It’s also creating connections between people wearing them out and about. One woman wore hers to the pub and her server asked about it, when she explained he told her he and his wife had been through something similar and they were really struggling to find support. He said he was going to go on the website to find out more. It’s incredible to me that people are connecting through it and feeling less isolated.
My hope is that as this campaign grows, it won’t just be people affected by baby loss who are opening up but all of us. Only when we all feel comfortable talking about this will we be able to remove the stigma and give people the words to know what to say. Then, maybe families bereaved by baby loss will finally get the support they deserve.
To find out more about Katie's campaign, click here__.
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