I am two and a half years into this strange old world that is baby loss. Before I had pre-eclampsia at 22 weeks, before Rory died less than a week after my diagnosis, I’d only ever met one person who had lost a baby (a neo-natal death) and perhaps a few people who had suffered a miscarriage. I was aware of course of their sadness and I never knew quite what to say or do. I was guilty of changing the subject, of silence, of putting my foot in it and just not knowing what was best. In two and a half years I have lost two babies at 23 weeks and I think I’ve seen the best and worst of peoples’ reactions to a loss.
I’ve written this guide as it might be helpful, it might open eyes and help people to help their loss parent friends a little. It does sound a little confrontational in places, it is not meant that way, living with loss is a constant battle and whilst it has broken me time and time again, it has made me stronger and harder than I ever contemplated it would. I speak with a matter of fact tone as my losses are ‘normal’ to me, part of me and the making of who I am today. I am sensitive, I am strong, I don’t suffer fools gladly and I don’t have time for those who don’t acknowledge that I have three sons even though the world can only see one.
One major lesson is that after a baby dies your relationships with the outside world will change, accepting this fact is hard for the parents and even harder for friends of those who have suffered a loss. Nobody knows what to do and with emotions running high, a small error can feel like the end of the world to loss parents. I really hope my advice and observations help reduce issues like this. During my loss journey I have lost friends, I have gained friends and those who were acquaintances are now good friends – it is funny how things work out!
In the early days and beyond:
Message your friend, write to them, send a card, if you are close give them a call. Don’t be offended if there’s no reply or acknowledgement. When your baby has died, knowing that people are thinking of you is enough even if you don’t have the energy or strength to reply.
Say the baby’s name to your friend, on social media, anywhere, honour that they lived. If you don’t know the baby’s name, ask. Ask why the name was chosen, what it means and the same goes for middle names. Loss parents love their baby’s name and they’ll love you asking about it! Say their baby’s name often. If you feel able to honour their baby – writing names in sand and taking a photo is a nice easy one.
Don’t make empty promises. If you say you will pop over or help, do it. Don’t say ‘if you need anything let me know’ and leave it at that, make a tangible offer and follow it through. Ask if they need help and make suggestions of what you can do if they don’t know. Simple things like nipping to the shops, or feeding their cat – anything that is helpful will be appreciated.
When I arrived home I wasn’t up to making dinner and my husband was so frazzled neither was he. Meals left in the freezer were a lifesaver. Take food around to your friend, don’t ask to come in or expect to be invited in, it’s a difficult time – it will be appreciated though. If you aren’t close send Cook vouchers or arrange for a food/shopping delivery.
If you feel up to it, ask if your friend has a photo they’d like to share. Comment on the baby like you might with a regular newborn. When Henry died, Margaret the midwife told us he was beautiful, she cooed over him and spoke about him like he was a normal baby. The reality was that he was the size of an 18 week baby, with red skin and a puffy battered little face but to us he was beautiful (he is beautiful) and the spitting image of his big brothers. We needed those kind words and will never forget them. Before Rory died I didn’t understand why people took photos of dead babies, I thought it was odd, I get that it might appear morbid to a non-loss friend but photos are all parents might have of their babies. Imagine only having a handful of photos of your baby, imagine how precious they are. I recall being really frightened of sharing Rory’s photo on facebook for the first time, I was nervous, I made sure I shared one of him alive rather than dead. I only received lovely comments from those who took the time to reply. We have had negative comments about our photos, they hurt, no doubt about it, but I know the comments come from a place of not understanding the importance of these few photos, of not appreciating the beauty behind the sadness.
Don’t change the subject if your friend wants to talk about what happened. All you need to do is listen. They don’t want you to give advice or solve their problems, just listen and share their sadness for a moment. If your friend cries, don’t stop the conversation, they were probably going to cry anyway, they might be crying because they are happy you are taking an interest. Ask if they want to carry on, give them a hug (and a tissue) and let them do and say what they need to. Ultimately don’t be frightened to mention their baby, you will not be reminding them of what happened, they won’t be forgetting that in a hurry, but what you will be doing is acknowledging their baby which will be very much appreciated.
Don’t say their baby is in a better place, or that it wasn’t meant to be, or worse, that it happened for a reason. Such phases are well meant but they are not always a comfort to loss parents. Don’t say ‘at least’ you are ok, or ‘at least’ you have a child already. There is no ‘at least’ when a baby dies.
Don’t compare their loss to your pet/granny dying, it is not the same. When a baby dies you lose a lifetime, you lose every milestone, every sleepless night, every birthday. It is not the same.
Don’t say, well at least you hadn’t bonded, at least you didn’t know them, at least you hadn’t seen them grow before they died.
Siblings born before or after a loss are not consolation prizes. Do not say, at least you have X, or you’re so lucky to have X, or you need to be strong for X. Loss parents with living children know how lucky they are, it is not helpful. A good way of supporting parents with living children might be to offer to look after them for a while, or organising a play date. Parenting a living child after loss is hard, it is isolating and it is draining – any help on that front is appreciated.
Don’t say – you can have another or you can adopt, or you can find a surrogate. There is no quick fix or easy decision for a loss parent, all of these options do not have guaranteed outcomes. Not every loss parent gets a happy ending baby.
Don’t pretend that you understand what it is like, if you haven’t lost a baby you can only imagine. Be honest and say you can’t comprehend how they are feeling. Your friend will appreciate that far more than empty platitudes.
Don’t assume because someone appears happy that they are ‘fixed’. I am a very good actress, I can ‘do’ normal, I can laugh and joke and pretend that I’m fine. When asked how I am I will reply that I’m fine before commenting on the weather. Scratch below the surface and you will notice that I avoid bumps and babies, you will see me put my headphones in when the noise of the real world gets too much, you will notice that the smile when my son plays with a toddler is paired with eyes that are sad, you will see me staring into nothing as I wonder what might have been. Ask me how my Thursday was and I might tell you that I spent an hour and a half in an EMDR therapy session to treat PTSD symptoms associated with two traumatic losses.
Include your friend in social invites, even if they keep declining, keep asking. Loss parents are lonely, they might not be strong enough to call and ask to meet up. Not only have they lost their baby, they have likely lost themselves too. Reaching out to someone will not go unnoticed and will really make a difference. Often your friend might decline, or cancel at the last minute but keep asking them out as one day they might be strong enough to come out for some ‘normal’.
Message them to check they are ok every so often. Don’t be offended if there’s no reply.
If the parents have special dates (it is likely they will have lots), ask what they are and honour them with them. Send a message or a card, or light a candle and send them a picture.
Follow the parents’ lead. If they acknowledge their baby in cards then it is lovely to reciprocate if you feel able to. An extra kiss or star is enough to show you remember that their baby is part of their family.
Don’t judge or pass comment on the dates that loss parents hold dear and the rituals associated with them. Dates and memories are all they have, there will be no firsts, no milestones. Things like pregnancy test dates, scans, first movements, concerts, dates of bad news, birth dates, due dates, funeral dates are all remembered and might be a trigger or sensitive time. As a loss parent I cling on to every date as it’s a memory, something to cherish.
Don’t ask your friend if they are feeling better now or if they are over it yet. Many parents who have suffered a loss are experiencing some sort of trauma. If the baby was born in the second or third trimester the mother would have had a labour and given birth to a dead or dying baby, the father would have seen this happen – that is not something easily forgotten or ‘got over’ in a flash.
If you are having a party or meeting with friends and you know babies or bumps might be present, tell your friend in advance. Let them decide if they can face it. Perhaps suggest a safe place where they can go if it gets too much, we really like escape plans!
If your loss friend sells their baby stuff to clear space (and their minds), don’t ask to buy things. Consider the weirdness of your baby using something meant for their baby, think of how your friend will feel when they see it in use. Don’t be offended if they would prefer to sell to a stranger.
Don’t forget the dads!
Dads grieve too, often this is behind closed doors as they are the ones running around looking after their partner and running the house whilst working and having to process this life changing event.
Ask the dad how they are, offer help, offer to have a drink with them – anything to show that they are not forgotten is great!
If announcing a pregnancy/arrival of a baby:
Be discrete, send a message before a main announcement is made.
Don’t hide your pregnancy and tell your loss friend at the last minute or only when you have to tell them for another reason. The fact you couldn’t trust their heart with your good news hurts. The decision is likely to be well intentioned but tell them when you tell the wider world, don’t hide it as them finding out much later will be far worse for your friendship.
Don’t be offended if they don’t reply to your announcement, don’t be offended if they’ve stopped ‘liking’ your posts on social media, they’ve probably unfollowed you. If they unfollow or unfriend you on social media, it is done to protect themselves, not to annoy or offend you. For me, I need to keep my social media feeds ‘safe’ and that essentially means no bumps and babies but lots of cats!
In your announcement don’t say, ‘we’re not excited, we know what can go wrong’. That makes bereaved parents feel they are putting a downer on happy news. To them it might feel like a lie because of course you are excited – you are perfectly entitled to excited so please don’t dismiss it. Saying that you are being cautious and that know what can go wrong, reminds them that it did go wrong for them (not that they’ve forgotten). An alternative turn of phrase could be ‘we don’t want to upset you so we will be discrete with baby talk around you, we imagine this might be difficult so we’ll be guided by you’.
If you have a pregnancy scare, remember, telling your loss friend about it might cause them to get upset, they might worry that things are going wrong for you. If they have anxiety or trauma associated to their loss (which is very likely) you might set off a trigger. If you need to tell them something or need advice, wait until you know exactly what is happening, this will avoid causing undue stress. If in doubt tell someone else or seek advice elsewhere.
Do acknowledge the difficulty the pregnancy may cause for them. Don’t be offended if they don’t respond to messages or don’t want to meet up with you. Don’t be surprised if they are quiet or distant around you, they are adjusting to your news. Give them time and space to grieve for the change in dynamic.
If you are pregnant and you are going to see your friend try not to draw attention to your bump – there is no need to hold it (it won’t fall off!), or rub it. If you can, wear loose floaty clothes – skin tight tops which accentuate a bump are not helpful. If I’m honest, baby bumps repulse me, I’m frightened they will touch me – ridiculous I know but for me they are very traumatic, the bigger they are the worse it is.
If having a baby shower, text them before you send invites, some loss parents would love to attend, others would prefer to send apologies with a nice gift. If you don’t want to ask direct, ask their partner or a close friend. The same goes for Christenings and other baby related celebrations.
When the baby arrives they may want to see you, they may not. Respect their wishes and don’t be upset if your friend doesn’t visit. If they do come to visit don’t answer the door with your baby in your arms, if you can, pop them in their Moses basket or go out for a walk. Some loss mums love to hold babies, others don’t – be respectful of either choice and be guided by your friend.
When sending cards or gifts that contain pictures of your baby, stop and think how this might make your friend feel. Either check in advance (and be prepared for a ‘thank you but no’ answer), or send a plain card/alternative gift.
If you don’t know what to say or do ask the parents or their families for guidance. SANDS do some really useful leaflets which cover advice for friends and families, they are free to download.
If you don’t know what to do just give your friend a big hug and tell them how crap and unfair life is.