Why you must never tell me: ‘I’m sorry you lost your baby’

‘Too many leave hospital after the shock and trauma with no advice on what to do next’

Each day in the UK, 14 babies will die before, during or shortly after birth – yet many parents suffer the heartbreak in silence. Writer Susan Clark, who has endured that anguish not once but three times, explains how to help and what not to say   

When your baby dies, so does a part of you. The person who always looked back at you from the mirror is gone for good. Shattered into a thousand tiny shards, each one waiting to cut, pierce and wound, no matter how carefully you, or those who love you, try to pick them up to put you back together.

When it first happens the silence is suffocating. No baby showers, birthday celebrations, nursery rhymes or daydreams. If hope of any kind is still in the mix, it’s somewhere that you cannot reach or even imagine. I know this from painful personal experience: my ex-husband Declan and I went through the abrupt and traumatic ending of three mid-term pregnancies over a five-year period beginning nearly 30 years ago.

At the hospital the first time, we had been ‘mum’ and ‘baby’ until things started to go wrong, when we instantly became ‘the patient’ and ‘the foetus’. My waters had broken early and we were told there was insufficient amniotic fluid left for our baby to grow to term, with the inevitability of infection, fatality and danger. They said we would have to lose this baby for a chance of having another that could reach full term. We were advised to kick-start labour and sometime, somewhere, during the next hours our baby stopped living.

During the induction the clock slowed to a different, dragging version of time as we waited – the baby’s dad and me, and a very frightened young midwife – for something nobody wanted to happen and nobody knew how to stop. I recall feeling terrified when it was all over and I was asked if I would like to go to see my dead child. I did not. I knew that if I went to see him it would make it real: he really would be dead and gone.

Someone told my husband it would help us to say goodbye to him, so he agreed. I thought that took great courage on his part; a courage it took me the rest of that day to find. When I saw the not-yet-a-proper-baby I had delivered, I felt a rush of guilt and failure mixed with a sweet tenderness. I was afraid to touch his tiny fingers, afraid to let myself fully feel what his death meant to me.

I did everything I could to block out those unbearable feelings of loss and, looking back, I realise I was guilty of the pact of silence. Of not knowing how to speak about something that had switched, in a heartbeat, from those joyful and innocent first days of pregnancy and tentative imaginings of parenthood, to a nightmare that I thought I must have deserved (why else would it have happened?) and I’d have to bury to survive. Every parent whose baby has died talks of finding themselves utterly alone with their grief. Too many say they leave hospital after the shock and trauma with nothing else; no follow-ups and no advice on what to do next to navigate the terrible onslaught of grief.

Yet they’re far from alone. Every day in the UK, 14 babies will die before, during or shortly after birth. The isolation that parents feel speaks volumes about how society is unable to talk or even think about the tragedy of a baby dying. It’s why Sands, the leading stillbirth and neonatal death charity in the UK, has a mission to break the taboo around baby death. And it’s why I agreed to work with the charity even though my first reaction when asked was to run for the hills.

But something else was tugging around the edges of my conscience: it felt as though three pairs of tiny hands were asking me to step up and use my skills as a writer and journalist to help Sands break the silence.

So I agreed, spending hours listening to so many brave women such as Kym and Janine sharing not only their painful stories of grief, but also their tales of growth and hope.

The result was Loving You From Here, a book which I hope will act as a guide and a comfort for those who have experienced the trauma of stillbirth and neonatal death.

In so many respects, finding your way through this shattering loss is a lifelong challenge, the first hurdle being that you don’t want to be a different you. You want the old you and – more than anything, and with an anguished yearning so intense you don’t know how you will survive – you want the baby who has just died.

This, then, is the hidden terrain – a kind of hinterland – from which you will have to find your way back to the world. Some days you might take a tiny step forwards, only to find yourself waking up the next day full of all the grief and fury and hopelessness you thought had gone. You are making progress, each and every day, although it may not feel like it.

The word ‘loss’ will make you wince each time you hear it: ‘I’m sorry you lost your baby.’ You want to scream, ‘I didn’t lose my baby! My baby was snatched away from me.’

Hope is your destination and you will find it again, but you need the support of those who love you as well as those who have already passed this way before you. You start to shape a new normal – one built on the enduring bond with your baby who died. You need to decide that this is something you want; namely a deep, meaningful and ongoing relationship with someone who is not here and who did not leave any trace of their personality. There is no right or wrong here. Do what feels right for you. I lost three babies and most evenings I light a group of three candles and like to wear three rings on my right hand in memory of them.

‘OUR WORLD CRUMBLED’  

KYm and mark during their precious hours with newborn Alfie

KYm and mark during their precious hours with newborn Alfie

Kym Field gave birth to baby Alfie on 19 December 2015 but he died at just 36 hours old. Kym and husband Mark are now parents to Barnaby, three, and D’Arcy, one. Immediately after Alfie was born following a seemingly uneventful labour, the room filled with people and my husband was pushed to one side. I remember the utter silence. ‘Not all babies cry as soon as they are born,’ I reassured myself.

Alfie was briefly shown to us and whisked off. We were told he’d gone to the neonatal intensive care unit (NICU), but details were sketchy. I was taken off for stitches and so my husband was left alone in the delivery room.

I remember being wheeled past all the new mums and their babies and assuming ours would be cuddled up to my husband when I got back. But he wasn’t. A nurse from NICU came to talk to us, but all I remember was being told we had a ‘very poorly boy’.

When we visited Alfie for the first time, he was perfect in every way despite being covered in wires and beeping machines. But we were advised to arrange a christening for him: he was just 12 hours old. I remember looking around at the family and friends who had gathered and feeling upset that they were all crying. I had just given birth to a perfect baby and they were standing around sobbing. I really believed we would all be home in time for Christmas just like we had planned.

The next day our world crumbled. We were told Alfie had a severe brain injury and would not survive. Later we’d find out it was caused by a misinterpretation of his heart monitor during labour, but at that moment, words can never describe how we felt. Even now when I say those words or think about that moment, I feel like I can’t breathe.

Alfie died peacefully at 36 hours old, surrounded by family. We spent the night on the antenatal ward where we had to endure the sounds of babies crying and women in labour, which was torturous, and the next day we were just sent on our merry way to navigate this new life for ourselves. We’re so grateful we had great family support because without it I’m not sure we could have got through it.

Life almost five years on is certainly not the one we had planned. The pain and loss of Alfie never gets any less – time just makes it easier to carry the immense weight.

‘All our hopes were taken from us’  

Janine and Callum with Rory and Adara

Janine and Callum with Rory and Adara

Janine Norris gave birth to Sylvie-Rose on 1 February 2013. She was stillborn at 28 weeks. Janine and husband Callum are now parents to Rory, six, and Adara, four.

So much has been taken from us: our dreams and hopes for Sylvie-Rose. We will never know if she was fiery with my sense of adventure or calm, quiet, patient and gentle like her daddy. We wish we could have kept her, but we know she is waiting for us, beyond the stars. We can only try to focus on the joy and love she brought to our life.

From the moment we found out that we were expecting we were ecstatic and each milestone brought new happiness, wonder and contentment. Telling our families and friends, the first scan, the first movement. The first time Callum felt Sylvie-Rose kick.

Then I went for my 28-week check-up. There was no heartbeat. Our little girl had died in utero. Our world fell apart. The next day we went into the hospital so I could be induced. She came into this world, silently, at 2.45pm. She was beautiful and perfect, and we exclaimed over her as any new parents would.

If you had told me at the time I would laugh again, or love again, or feel confident again, I would never have believed you. The joy goes out of life and you feel like you’ll never be able to do the things that you took for granted before. I felt that way for a really, really long time.

There is no question that our son Rory brought the light back to our lives. Life does carry on; if it doesn’t, you’re not honouring your little one that died. I live the biggest and best life that I can because Sylvie-Rose didn’t get to do that. We always celebrate her birthday: we make a cake and take flowers to her bench in the park. And this year, which would have been her seventh birthday, Rory said he wanted balloons for her too. His little sister, Adara, also talks about Sylvie-Rose. They both know who she is. It’s love that keeps us going through the dark days. Our love for each other, love from our families and the love of our friends.  

How to support newly bereaved parents   

When a baby dies, there are no right or wrong decisions and parents need to decide what is best for them. It is important to try to take your cue from the parents rather than imposing your views or needs on to them. Remember that bereaved parents should not feel that they have to comfort you, but don’t be afraid to show that you’re upset.

WhatsApp and text messages may go unanswered initially; voicemails and emails the same. It’s hard for bereaved parents to reach out or ask for what they need – you may have to keep trying gently.

Here are some things that you can do…

★ Acknowledge that the baby died, however long ago it happened, and say the words, ‘I’m so sorry your baby died.’ Say the baby’s name if you know it; if you don’t then ask the baby’s name.

★ Ask them about their baby. What were they like? Ask if they would like to tell you about them.

★ If you are family or a close friend, remember the anniversary of the baby’s birth, due date or the day they died.

★ Include the baby who died in the number of children a couple has had if you are talking about that.

★ Help newly bereaved parents by offering to take on some of the everyday routine responsibilities; even if it’s just walking the dog or cooking food to drop round.

★ Listen. Listen. Listen.

For help and advice, call Sands (Stillbirth and Neonatal Death charity) on 020 7436 7940, email helpline@sands.org.uk or visit sands.org.uk. Loving You From Here: Stories of Grief, Hope and Growth When a Baby Dies by Sands with Susan Clark is published by Yellow Kite, price £16.99. Order a copy for £11.99 until 25 October at whsmith.co.uk by entering code YOUsusan at checkout. Book number: 9781529382754. terms and conditions: whsmith.co.uk/terms.  

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