The first words a bereaved parent hears letting them know of their entry into their own personal living nightmare are usually, “I’m so sorry, there’s no heartbeat.” For many of us all we can utter in response is a guttural cry of pain. Perhaps a prolonged exclamation of, “No!” as our minds struggle to comprehend the slow motion car-crash-style turn of events that is unfolding as we helplessly watch on. Some of us are simply stunned into silence, while numbness takes over as a coping mechanism.
If it is an early loss we might remain quiet about it, either through choosing to keep it private for personal reasons, or out of a sense of obligation not to share something that is too often shrouded in mystery and shame. The so-called ‘12 week rule’ has effectively stifled so many people I know who have been through first trimester miscarriages and left them suffering in a lonely silence enforced by social convention.
If others knew about our pregnancy, whatever the gestation, we then have to think about how to break the news. Often starting with other family members – sometimes children amongst them – but soon followed by friends, neighbours, work colleagues. We are forced to find those words, either in written or spoken form. Like everything to do with our new situation (even simply continuing to breathe), this can feel an unwelcome, unwanted and daunting task, something we never imagined having to do. We know those words are undoubtedly difficult to absorb, hard to figure out how to respond to, but the first thing to remember is that even if you have ‘been there’ personally, it’s unlikely to affect you on anything like the same level as it is those at the epicentre of this tragedy. When it’s your own baby it can feel like it’s ripping your entire world apart. Tearing up everything you thought you knew about life. Destroying your sense of self. For me it felt like my heart had shattered. It was then like I had to watch the broken pieces melt away into oblivion as I faced up to a lifetime of grieving my daughter.
The ripple effects don’t end there. You discover that the supermarket cashier who was quizzing you on whether you’d picked out a baby name yet will ask you excitedly upon next seeing you, “So! What did you call them?” That acquaintance that you laughed with in the queue for lunch at the work canteen about pregnancy cravings (as they watched aghast as you piled on the extra chilli flakes to your bowl of soup) sees you on your way up to your office as you brave the return to work. They presume you’re in on a ‘Keeping In Touch’ day and joke about your baby getting cayenne pepper added to their milk as a treat to remind them of you in your absence. Both your hearts sink lower than basement level as you watch their face fall upon hearing the news that your baby died, and neither of you can exit the confines of the lift fast enough. You start to get a knot in your stomach during every social interaction because of the fear of 'those looks' or an awkward atmosphere descending if your loss comes up as a topic of conversation.
It would be disingenuous to claim that talking about the death of a baby will ever be as natural as small talk about the weather, but Katie Ingram’s #NoWords campaign aims to make conversations around baby loss that little bit more common, and therefore that tiny bit easier.
Those of us whose baby died some time ago will no doubt realise that countless individuals have striven to make a difference and worked tirelessly to break the silence over the years – from those with huge popular appeal like Elle Wright, author of ‘Ask Me His Name’, actors Kym Marsh and Simon Gregson reliving some of their own personal trauma and experiences of baby loss through a late miscarriage storyline for their characters in the soap Coronation Street, peer support groups such as Norfolk & Norwich Baby Bereavement Group, the wonderful annual Butterfly Awards ceremony, Jess Clasby-Monk's incredible #BabyLossHour and #AdventToRemember initiatives – indeed everyone who has shared their own stories of heartache, hope, healing, and everything in between, and put themselves ‘out there’ in order to help others feel less alone. Charities such as Sands, The Miscarriage Association, Saying Goodbye, and Tommy’s (to name just a few) have all worked exceptionally hard over many years to improve things for bereaved parents.
They have often had support from people with a high profile to help raise awareness, but it really does require ever more of us to keep steering the ship in the right direction. The baby loss community provides invaluable peer support to bereaved parents, but more of us join this shitty club every single day, and in my opinion we can’t continue to attempt to carve out our own ‘unique’ paths or shout louder into our echo chambers about how we need to ‘break the silence’ and how things need to change. To start and sustain conversations that will continue to make progress in this field we need a lot more help from those around us who have not experienced the death of a baby personally, but who will likely know several people that have – whether they are open about it or not.
Baby loss can happen to anyone – no matter their socio-economic status, their health, the colour of their skin. 1 in 4 pregnancies end in a loss, within the UK 1 in 250 babies are stillborn - around eight babies a day - and in 2018 in England and Wales alone around 1 baby in every 150 died before birth or before they were 4 weeks old, leaving more than 4,500 families bereaved and devastated. And sadly for some it does happen far more often than others – even more tragically this cannot be explained away through bad luck or genetics. Stillbirths remain a disgracefully neglected issue, invisible in policies and programmes, underfinanced and in urgent need of attention. Worldwide in 2015, for every 1000 total births, 18.4 babies were stillborn, the vast majority in low- and middle-income countries. Results from research published in the PLOS Medicine journal in 2019 demonstrated that even in high-income countries black women were up to twice as likely to experience stillbirth than white women. Over 15 million pregnancies had been analysed across 13 studies in the UK, USA, Denmark and Norway, led by Queen Mary University of London. Professor Shakila Thangaratinam from Queen Mary's Blizard Institute, commented: "We were surprised to see how much poorer pregnancy outcomes were for black women.” None of these babies are just statistics, these are real people. For families who have been through this the common refrain is that this is a lifelong heartache to carry.
Women who have suffered stillbirth or neonatal death are more likely to have anxiety and depression afterwards. One study in the US of 800 women showed that women who had a stillbirth were twice as likely to suffer with depression compared to those who had live births. This effect had actually increased when they were studied again two years later, showing that stillbirth has a long term effect on mental health. Another study of 609 women who had experienced a stillbirth or neonatal death, showed that these women were four times more likely to have depression and seven times more likely to have post-traumatic stress disorder. In the words of Jess Clasby-Monk: “I want the world to understand that the guilt you have after your baby dies is suffocating. You question everything. I want the world to recognise that our naivety and innocence has been robbed, our perspectives shifted, our anxieties to anything and everything multiplied. Our personalities altered, forever reflecting our love and our loss.”
So, how can you help?
- Join in with fundraising for baby loss charities and encourage those around you to support your efforts or those of others – tell them it’s an important cause to get behind. Become more familiar with the statistics, and the work that organisations are doing in terms of conducting research into how and why babies die – they are doing amazing things to uncover the causes of miscarriage, preterm labour, stillbirth and neonatal death, and they are coming up with groundbreaking treatments to prevent these tragedies from happening in the first place.
- Buy a #NOWORDS t-shirt or a #NOWORDS tote bag. Wearing the t-shirt or carrying a bag with the #NOWORDS slogan can be a genuine icebreaker – not only letting people know that you are comfortable with helping break the silence and shattering the taboos that surround baby loss – but also that you support those who do.
- If you know someone who has been open about having experienced the death of a baby simply broach the topic. Let them know that it’s more than fine to talk about their experience in ‘polite company’ – that you are there to listen, to acknowledge and validate their baby and to support them in their grief in whatever way you can.
- For some insight into the grief of bereaved families and how to support those affected I have some excellent book and podcast recommendations. Firstly, 'It's Ok That You're Not Ok' by Megan Devine.
There are some wonderful books more specific to baby loss available, but honestly, considering that grief is a universal experience, I can't recommend Devine's book enough as a general 'permission to grieve' anthem that we could do with learning the words to even if we don't all find ourselves singing along to it.
The book 'There Is No Good Card For This' by Kelsey Crowe, PhD, and Emily McDowell, is an invaluable guide to offering support and demonstrating empathy 'when life is scary, awful and unfair to people you love' (although it also covers advice for work colleagues and even acquaintances) that should quite frankly be on the National Curriculum in my opinion.
If you're more into podcasts than books, Footprints On Our Hearts, Sisters in Loss, Worst Girl Gang Ever and Smooth Stones release regular episodes, and are great to listen to in order to gain a better understanding of what those experiencing baby loss go through.
- Ask carefully-worded and open-ended questions about their pregnancy and their baby. It will depend on your relationship with that person and what you already know, as well as how they are feeling or coping with their grief that day, but questions I never tire of answering are:
“How did you choose your baby’s name?”
“How much did they weigh?”
“Were you able to spend much time with your baby after they arrived?”
“Who do you think they looked like when they were born/who do you think they might look like now if they had lived?”
“I’d love to see a photograph of your baby if you have one that you’re able to share?”
“What are your favourite memories of your pregnancy with them?”
“How do you like to remember your baby on their birthday/at [insert special occasion here]?”
“What special things remind you of your baby [can be music-related, animals, flowers, a colour, even tastes and smells]?”
- Beware that bombarding them with questions might feel intrusive or overwhelming. You will hopefully get a sense of how much and what they are willing to divulge and you can then respond sensitively – it can also change day to day – please don’t feel that if a conversation doesn’t get too far on one occasion that you can’t try again on another. There are, however, certain aspects that it might be best to take their lead on entirely. It is perhaps perfectly natural morbid curiosity to ask probing questions about a baby’s death – including asking, “What exactly happened?” or if they had ‘a reason’ (as if there can be any fathomable reason for a baby dying), but please tread carefully… you are essentially asking people to relive some of the worst moments of their life. As outlined earlier, some of us battle with our mental health as a result of our experiences, including experiencing symptoms of PTSD, and/or suffering with anxiety and depression, and having to recount the more inescapably harrowing parts of our story could prove too much on any given day.
- Instead of, “Let me know if there’s anything I can do”, or a “We must catch up – would love to see you or hear from you soon”, offer to do something concrete with or for a bereaved parent with no expiry date on the offer, or expectations - always give them the option to say no with no explanation required, but don't underestimate how much comfort it can bring to have invitations to get together in person or offers of help with chores. Some wonderful things people did for us in the early days/weeks were dropping round some meals prepared for the freezer in dishes they didn’t need back. Ordering an online shop of essential groceries to be delivered. Sending a message or card to check in and let us know we were in their thoughts, without any need to reply. Coming round to be with us (crucially though, checking that this was ok first and receiving permission, plus not staying too long - please remember that any socialising in the depths of grief can be overwhelming and exhausting for all involved). Gifting us things bought with our baby in mind (e.g. a rosebush to plant in her memory, handmade items with her name on).
Honestly the greatest gifts you can give us are your time, your respect, your warm, loving hearts and compassionate ears. Arranging to go for a walk in a quiet place together (and making allowances for them to bail out if need be) can feel less daunting than a face-to-face chat or even one over the phone. Please also know that if you are in their presence in the early days of their grief, or any other similarly raw period afterwards, that you have been granted access to something that you could never hope to fathom yourself. The temptation to try and ‘connect’ to it by relaying anecdotes, or offering up platitudes risks them feeling more alone and lost. Just like their baby, their loss and the grief that follows are totally unique. Grant their experience the sacred space it deserves and just be there to listen and show that you care. Watching this excellent short video explaining the difference between sympathy and empathy can be a game changer for helping you understand what helps.
I'd also highly recommend this short video from the wonder that is Megan Devine about the value of acknowledgement.
- Try to avoid comments or statements that attempt to dish out advice, offer platitudes (“At least you know you can get pregnant”), explanations (“It just wasn’t meant to be”), or even what you might consider to be compliments. Many of us know that you wouldn’t mean it to come out this way, but hearing, “You’re so strong, I don’t think I could survive losing a child”, can appear judgemental: we can hear it as being that we can’t have loved our baby enough if we’re still able to keep going without them. Telling us how ‘brave’ you think we are for sharing our story can come across as patronizing and feeds into the narrative that we are doing something out of the ordinary by talking about our babies. By all means tell us that you admire us, that our strength inspires you, that you love hearing about our beautiful babies. But if normalizing talking about our babies is the goal please help the love and pride we feel for our children gone too soon shine through instead of allowing any notions of our ‘courage’ cloud your thinking.
- Remember special dates with families – an anniversary, a due date, a birthday, Mother’s Day, Christmas, the milestones of starting school… all of these can pose challenges and throw up agonizing reminders of what could have been. Even just sending a text or a card can mean such a lot to let us know that our baby has not been forgotten, and that you are thinking of us - you can search for ranges on Etsy or send a beautiful e-card.
- Never exclude bereaved parents from the celebratory moments of life, but consider how to let them know about a new pregnancy or a new baby’s arrival or word an invitation to a baby shower or child’s birthday party with sensitivity (and let them know that they can decide whether or not to attend without judgement). Personally I welcome these things in written form so that I can digest the news or invite and formulate a response when I’m ready, rather than feeling immense pressure to put on a brave face to offer up my congratulations immediately, or offer up a hastily cobbled excuse for why I can’t attend an event that I never anticipated could bring up such mixed emotions.
- Choose your audience when making conversation or jokes around ‘normal’ parenting. Phrases such as, “Hey, at least I kept the kids alive today”, or, “Go on, it won’t kill them!” can be excruciatingly painful for bereaved parents to hear. As can listening to any parent complain about sleep deprivation or enduring tantrums. Please believe me that as a parent to living children who have been perfectly capable of driving me to distraction during the day before keeping me awake most of the night that these are problems that simply do not compare to the nights I have spent sleeping fitfully or the tears I have shed due to my daughter dying. What I wouldn’t give to have been losing sleep or tearing my hair out because she was crying out for me.
I have written before about how important I think it is to help bereaved parents feel more comforted, less alone, and to help those wanting to support them have a better chance of understanding what they are going through. But in that same blog post I also wrote about why I published These Precious Little People, a book for children affected by the death of a baby during pregnancy or soon after birth. Partly because there doesn't seem to be the same effort being made with regards to making those conversations, those experiences, that invitation to grieve openly and honestly, accessible to children. Please don't forget that #ChildrenGrieveToo. The more us adults can make efforts to find the words, the better chance we have of improving things for the next generation - for both the bereaved and those wanting to support them.
But don't just take my word for it. The fabulous psychologist and author Jessica Zucker, creator of the #IHadAMiscarriage campaign, wrote about this back in early 2018 too.
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