Social media can be both a lifeline and simply torturous after your baby dies. The baby arrival announcement you might have planned now has to be changed to a mournful post revealing your devastating news (if you can even bear to do that in the early days of your grief - we instead opted to notify most people by email and only posted something on Facebook a little later). If you don’t start to unfriend people yourself you will no doubt notice your friends list diminishing as people back away from you in the immediate aftermath. You try to tell yourself that it’s their loss, that it’s better in the long run to only surround yourself with people who genuinely care and can support you, but it can still hurt and only adds to the isolation you feel. Friends or family posting photographs of their new babies or announcing their pregnancies on their social media accounts can feel like an icy dagger has been plunged into the cracks of your broken heart, drawing fresh blood and causing further pain - even years later. The ‘unfollow’ feature becomes essential during difficult times, and you hope that people understand if you withdraw completely for a while if you're going through a particularly rough patch.
You find blogs, Facebook pages and Instagram accounts you never knew existed as you learn about how miscarriage, stillbirth and neonatal death affect so many more people than you ever realised. It’s like a whole other world. One which you wish you never had to discover. Especially when you stumble across the pregnancy advice that you wish you’d read before your baby died - why didn’t I know about how important it is to monitor my baby’s movements? How is it that perfectly healthy babies can just die with no warning? The realisation is horrifying and reassuring all at once. You appreciate not being alone, but hate being part of this ‘club’. Your search for kindred spirits leads you to come across many other broken people, also muddling their way through their life after loss. Some give you hope - they have embraced a new normal, they have gone on to have other healthy children, they seem to be coping well. Other times you might find yourself sobbing through the dark lonely nights with fellow parents with achingly-empty arms as you wonder together how on earth you will survive this - perhaps questioning whether you even want to. When you feel a little stronger and less immersed in your grief you find yourself inspiring others and lifting them up when they are in the depths of despair, and you feel honoured that you can be that beacon of light that they follow onto a path promising brighter days ahead. The private support groups that I have found over the years have been absolutely amazing support for me in both good times and bad - there is nobody else like another bereaved parent to empathise with and support you. Joel The Complete Package has been especially great as it is UK-based, and you find it easier to relate to others’ woes around navigating the British healthcare system after losing a baby - struggling to know where to go to access mental health support, or how to fight for better care during a subsequent pregnancy.
Timehop reminders pop up over the years of your lighthearted pregnancy-related updates and the milestones you happily reached. The proud bump photos can be the loveliest to remember but also the hardest - the face smiling back at you seems like a stranger - you know you are not the same person, you never will be again. You gaze in wonder at the scan photos - often the only photos you have of your baby alive - and think about what your child would look like now, perhaps aged 18 months, or 4 years old. You want so much to be able to warn that naive and foolishly-complacent heavily-pregnant woman you see a shadow of in the mirror - you know that in that photo they are only weeks, days, or maybe even only hours away from the tragedy that was about to unfold. You so badly want to try and get her to take better care of her baby, to give that baby a chance to make it out alive. You find yourself triggered by the stories of near-death experiences with happy endings - the women that barely made it to the hospital but who benefited from the care of medical professionals just as their babies arrived, the babies that made it home out of NICU (always lauded as the strong ones, the fighters - aren't all of our babies deserving of those accolades - I'm sure they didn't choose to give up on their life before it had begun), the pregnant mothers who sensed something was wrong and didn't take no for an answer, leading to an early arrival but ultimately a healthy living baby - you are happy for them, sure, but you are angry that your pregnancy didn't have a different outcome. The guilt you direct at yourself, or the resentment you harbour towards healthcare professionals (who you feel should have taken better care of your precious cargo), can resurface so easily and linger for days afterwards.
So how can we come #TogetherForChange when it comes to social media after baby loss? If someone you know shares their grief with you please consider it a privilege, especially if they are also sharing precious photographs of their little one gone too soon. It can take a lot of bravery to post a photograph that they might be scared will get a negative reaction. We are proud parents and consider our babies to be beautiful and perfect - just as deserving of being shown off as any other baby - but we are also well aware that the world may not understand our desire to share photos of our children who have died and are nervous that people will greet them with a deafening silence or disgust (and believe me both can be equally as bad as both feel like rejection of the person that is most important to you).
The fact that bereaved parents post things so publicly is not attention seeking, it’s not them being ‘stuck’ in their grief or refusing to ‘move on’; it’s much more likely a healthy outlet for their pain, it's part of them coming to terms with their loss, them processing their grief, an attempt to heal, to move forwards and to try to find some kind of ‘new normal’, all the while honouring their babies and telling the world about the impact they are continuing to have on their life even when they aren’t physically here growing up with us.
Bereaved parents are also often desperately trying to help others unaffected by baby loss to better understand what they are going through, to give them an insight into their daily struggles so that people around them who care can better support them (and anyone else they come into contact with who might have suffered the death of a baby). Often it’s about raising awareness too - the last thing we want is for anyone else to experience the heartache we feel every day. So many of us feel that if we can share what we wish we had known to help others keep their babies safe and healthy during pregnancy, labour or soon after birth, then we will do it, and we hope you will join us in helping other babies arrive into the world alive and well.
So take a look at our photos, read our posts, ask us about our babies, direct us to helpful support resources or groups you might have found online, share our awareness-raising posts, try to better understand our grief, and grieve with us if you feel able to - especially at times of the year that are more difficult than most (birthdays, Christmas, even summer holidays when every other photo we see shared on social media will likely be of a happy, complete family). You will never remind us of our sadness when you reach out to share that you were thinking of our babies and miss them too: we love to hear their names, to know that they are not forgotten, that their little lives matter to you as well as to us.
Never feel you have to change your behaviour on social media to accommodate a bereaved parent’s needs, or, conversely, to hide your grief if you are a bereaved parent who finds it helpful to grieve openly via social media. But, if you want to be more sensitive to the pain you might be causing inadvertently, you could consider sending a personal message letting those who might struggle with the news know in advance about an upcoming pregnancy announcement, or perhaps limit the baby spam you are posting when it’s likely to be a painful time of year for bereaved parents you know (if their baby’s birthday or due date is approaching, for example). By all means keep an eye on what bereaved parents are posting and if you are ever concerned that what they are posting is a cry for help then you can try reaching out to them privately if you are willing and able to offer them some extra support, or you could signpost them to some professionals who might be better placed to provide some additional guidance if you think they might be receptive to that. Often simply letting them know that they are not alone and need not suffer in silence is the kindest thing you can do. They are probably surviving the best and only ways they can, and deserve credit for that rather than to be left feeling judged or misunderstood. And remember that their grief is lifelong, so be patient, kind and loving towards them, always.
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