Nobody wants to talk about miscarriage

It’s a difficult and painful conversation to have…but we need to start it. Julia Bueno, who endured four miscarriages and felt emotionally trapped between motherhood and loss, explains why 

My first miscarriage, when I lost my twins, happened in the 26th week of pregnancy, an extremely rare occurrence. Only one to two per cent of pregnancy losses concern babies who die after 13 weeks.

We tend to assume pregnancy is safe after the 12-week scan but I was to learn, more than once, that my babies were not. Every miscarriage can feel like a loss, even those experienced after a few days of pregnancy. This is something I know through personal experience and my work as a therapist. But my twins’ late miscarriage – or very early births [any loss of pregnancy from 24 weeks is now called a stillbirth, but before 1992 the law said babies were miscarried up to 28 weeks] – involved a grief that was compounded by people’s lack of understanding of what I most needed in that situation.

My pregnancy had been fraught from the outset. At around 20 weeks my cervix began to open and the doctor had to put in a stitch to keep my babies safe. By this time, we had already grown familiar with the exquisitely formed features of our twins, revealed in many grainy scans. A tiny version of my husband David’s nose emerged on one girl and the other baby vacillated between being my son and my daughter depending on its position. If I made it to 28 weeks – another two months longer – there would be a good chance of my babies surviving and thriving without lasting health problems.

During my self-enforced containment of bed rest, I awoke in excruciating pain. I woke David with the words we had both been dreading: ‘I’m in labour.’

While the medics dithered as they worked out whether it was possible to stop the course of labour, I knew that I couldn’t keep my babies safe. My cervix had opened and its stitch of promise was lost in the amniotic fluid on the floor. My babies would be born. They were too young to survive. I will never know exactly when it was that their hearts stopped beating.

Matilda was born with David by my side. She delivered herself weighing a whisper over a pound. Three, or maybe six hours later – I still don’t know – her sister Florence was born weighing just under a pound. I had to push this time, with Matt, a young obstetrician telling me how. Nothing I had read about pregnancy had prepared me for such an event. He took Florence to join her sister.

A midwife tried to persuade us to meet our daughters before they were taken to the mortuary. I didn’t want to see them. I also did want to, but I was too shocked, too frightened, too disbelieving.

I wanted to hold on to memories of my babies when they had been alive, kicking inside me, and so did David. Eventually the midwife heard our wishes, but I live with the deep regret that she didn’t give me more time for my shock to settle. I washed away the births in a bubble bath while I listened to the wails of a baby in the next room and the screams of a labouring mother in another.

Having just delivered babies, I felt a warm trace of kinship with her but I couldn’t bear to hear the other tiny cries. A midwife handed me a clear plastic bag with painkillers, folded papers and two white cards with a pair of pink footprints on each and two Polaroid photographs – the only tangible evidence I would have of my babies’ births and deaths.

I then stepped back into the world as a woman who had just had a miscarriage. This was a world that would struggle to understand both the physical process and the agonising nature of a lifetime of grief. A world that didn’t want to know the details of what had happened, a world that didn’t know if I was a mother or David was a father. I left hospital that day not only knowing that I couldn’t count on my body to make a baby, but also as someone who was fundamentally different from the person I was before. My confidence and self-worth plummeted. My anger and sadness could be so acute that at times my chest would burn and I was a difficult person to be around.

A lack of adequate understanding and support for the complexity of what had happened to me contributed to my despair. I felt intense pressure to ‘move on’ and get pregnant again.

I felt desperately, painfully alone. But I did ‘move on’, conceiving my now 16-year-old son just three months after we left hospital empty-armed. This made for a pregnancy steeped in guilt and anxiety, and my grief struggled to find the place it really needed.

After the birth of my son I went on to have three more miscarriages, which were made so much worse by the way I was repeatedly told that ‘at least’ these miscarriages were earlier on than the birth of the twins. Thinly spread compassion waned as my unlucky reproductive story continued: my fourth miscarriage was barely acknowledged at all by friends and family. Some wondered what all the fuss was about. I hadn’t ever lost a child who had breathed on earth.

Miscarriage tussles with ‘sort ofs’ and ‘almosts’, teetering in between life and death, parenthood and childlessness, the public and private realms, mental and physical health. And though later miscarriages pose difficult questions about how to treat the babies who have died, miscarriage at any time can pose similar questions and carry all the hurt of a lost child.  

Until the early 1980s, parents were routinely prevented from seeing or holding their baby after a late miscarriage or stillbirth. This practice was partly rooted in the ridiculous idea that women couldn’t bond with a baby unless it was born full term and alive.

Julia, David and sons, 2011

In the UK until 1992, babies born dead before 28 weeks were ‘miscarried’ rather than ‘stillborn’. Hospitals often wouldn’t keep records and babies were routinely taken away without parents being told where they would go next.

Sands (The Stillbirth and Neonatal Death Charity), along with the Miscarriage Association, now helps parents find out where their stillborn babies may have been, or have been, buried but can face a difficult task because there is often no paper trail. Sands also offers a bespoke certificate of birth – a profoundly potent statement of the existence of lost babies – with the child’s name, parents’ names and date of birth.

I was pressurised to meet my twins and it upset me at the time. I was far too scared – of what they would look like and of having to face up to what had just happened. I chose to rely on the bank of memories I had accumulated before, including a handful of scan photographs, their movements inside me and the unforgettable experience of their staggered labour. I wonder whether I would have chosen differently if someone had told me that they were beautiful, or made washing and dressing them seem like a natural thing to do. My mother did tell me much later how lovely they were but, by then, it was too late.

My only experience of meeting one of my late miscarriages was a very strange one. In the 16th week of my fourth pregnancy, I spent a long night in A&E vomiting and cramping but without any bleeding. I was eventually discharged with a wishful diagnosis of gastroenteritis and a terror of yet another loss. Moments after returning home, I felt a pressure on my cervix and rushed to the loo. Copious blood, tissue and clots left me but I held a small baby as it took its slower path in their wake. I brought it up into my palms but I couldn’t see anything, only a nothingness I can’t put into words. Many months later, for reasons I won’t ever fully understand, my mind delivered the image of my perfect, tiny baby looking at me. My ‘seeing’ eventually ‘married’ with my lasting memory of ‘holding’, but I’m still not sure if it helped me come to terms with my loss.

Julia with her sons in Wales, 2015

These days, many parents have smartphones to capture images of their babies and some hospitals offer a digital memory card to take home. There is also a growing practice among some hospital staff to offer to take photographs for parents and I have spoken with one bereaved mother who spearheads training in remembrance photography for babies lost in late miscarriage.

Emma and Jen, a couple I counselled through a late miscarriage, had about half an hour with their baby, Rose, to record their existence together as a family. This could have been extended if there had been a ‘cuddle cot’ available – it looks like a Moses basket but has a small mattress that is filled with cold water and preserves a tiny body for longer than room temperature allows. Some parents take their baby home with them in this cot before deciding what to do next.

Lactation after miscarriage usually only occurs after about 16 weeks of gestation. Unlike me, Emma felt positive about her milk: ‘I was making it for Rose and felt as though I was keeping a link to her. I was thinking about her every waking moment anyway.’ As Emma sat with me, months after she had expressed her milk for the last time, she battled to make space in her heart and her mind for another baby. The fact that Rose had left so little mark on others was one of the toughest things to bear. Nobody had asked to see photos of Rose or to find out if she had been buried somewhere. All of this was for Emma and Jen alone. One year on, when we first met, Emma felt an anger at Rose’s invisibility, a yearning for her presence and the tug of a tenacious guilt.

Emma’s feelings are not different from others who miscarry in the early weeks of pregnancy. But the couple’s experiences of parenting Rose in hospital, albeit briefly, underscored what is less well acknowledged – that Rose existed outside Emma’s belly as well.

The author Ariel Levy wrote about the tragic sense of ephemerality she felt after the death of her son, born prematurely at 19 weeks. ‘He was not someone who slept and played, we did not have routines, he had not established preferences or facial expressions.’ But she goes on to impress upon the reader the preciousness of the time she spent with him, because it provided her with the opportunity to make memories to enrich her ongoing bond with him. Importantly, it also allowed her to record an instant of it. ‘I took a picture of my son. I worried that if I didn’t I would never believe that he had existed.’

I have two Polaroid photos of my twin girls taken by someone I don’t know. They remain in an envelope in a box under my bed. Unlike Rose, my babies weren’t dressed or lying together like they should have been. They are presented as clinical specimens but I am heartened to know this form of photography is unlikely to happen today. While I hate to look at them, I treasure them too, for they offer objective proof that the twins and their births actually happened. 

Names have been changed 

Understanding miscarriage

Ruth Bender Atik, national director of the Miscarriage Association, says:   

Whatever stage in pregnancy it happens, miscarriage can be deeply distressing. For many people it represents the loss of a much wanted baby and the hopes and dreams they had for that child. Chromosome abnormalities are the most common cause at any gestation. One to two per cent of pregnancies end in a second trimester miscarriage, and these can have an additional impact. They happen when many women and their partners feel they are safely past any danger period, so there is a particular sense of shock. Many women will have to go through the process of labour. And they may be faced with decisions about having a postmortem or what happens to their baby after delivery. Feelings of grief and loss – and anxieties about the future – can be deep and long-lasting.

What can help people cope is having excellent care, kindness and compassion from diagnosis through to after the miscarriage and beyond, along with the support and understanding of family and friends. This was a life, however brief, and grief is a normal and understandable reaction. It differs from individual to individual, but people may be helped by marking the loss in some way: a funeral or other ceremony of some sort; a remembrance item; our online Stars of Remembrance facility [an online memorial space for babies lost in pregnancy] or by fundraising in memory.  

THE FACTS

• About one in eight pregnancies will end in miscarriage. Many more miscarriages occur before a woman is aware she is pregnant.
• Most miscarriages happen in the first 12 or 13 weeks of pregnancy.
• A late miscarriage refers to when a baby dies between 14 and 24 weeks of pregnancy.
• There is no provision in law to register a baby born before 24 weeks of pregnancy. However, Sands encourages all hospitals to offer the option of a certificate of birth.
• If a baby dies at or after 24 weeks of pregnancy, this is called a stillbirth.
• The main sign of a miscarriage is vaginal bleeding following by cramping in the lower abdomen (although light vaginal bleeding is relatively common during the first trimester).
• The majority of miscarriages can’t be prevented, although you can reduce the risk by not smoking, drinking alcohol or using drugs while pregnant. 

For further support, contact the Miscarriage Association (miscarriageassociation.org.uk) or Sands (sands.org.uk). This is an edited extract from The Brink of Being – Talking About Miscarriage by Julia Bueno, which will be published on 2 May by Virago, price £18.99. To order a copy for £15.19 until 5 May, go to mailshop.co.uk/books or call 0844 571 0640; p&p is free on orders over £15