World Prematurity Day: Joy, fear and grief in the days after baby arrived too soon

World Prematurity Day on Wednesday is part of a global movement to raise awareness of premature birth and the devastating impact it can have on families.

One in every 13 babies in the UK is born premature, the leading cause of death in children under five worldwide.

Here, in a powerful and personal essay, Away With The Birds, author Jemma Neville writes of love and loss in the hope of letting other families enduring such grief know they are not alone.

It was October, the season they call fall. Labour began at dusk while walking alone along the river path behind our house.

By the time I started to question, with horror, whether the cramps I was feeling could be the start of premature labour, the iron railings marking the edge of the river path had given way to beech hedge. I grasped at great handfuls of twigs and copper leaves before sinking to the mud and crawling home.

“You can’t go over it, you can’t go under it, you’ve got to go through it”, goes the chorus in We’re Going on a Bear Hunt. We sang it over and over again, behind facemasks, in the days that followed at the bedside of our baby boy in hospital. Grief, like labour, is something to be gotten through. In its throws, it is muddy and infinite, as though crossing a river or field of snow. Grief, like labour, concerns unconditional love.

Like all new parents, we read these first stories, held tiny hands, changed nappies and marked a new branch of our family tree. Unlike most new parents, we were condensing the decades of parenting we had wanted into the 19 days that our son lived for. These intense, anxious days were the best and the worst of our lives. We walked on eggshells, never giving up hope that our firstborn child would survive being born extremely premature after placenta abruption and infection.

My usually mild tendencies toward obsessive compulsive behaviour became extreme. Every choice of gesture, action, touch or word felt consequential to the outcome of those liminal days – an outcome that was rationally out of my control but, subconsciously, my responsibility as a new mother to put right, to fix. The tyranny of “what ifs” looped in my head. What if I had been more assertive in my visits to maternity triage? What if I hadn’t had Covid symptoms in early spring? What if I had worked less? What if I hadn’t gone swimming? What if my partner and I hadn’t argued?

Never did I question “what if” we hadn’t made this baby. This baby whose face relaxed on recognising our voices and who made mudra shapes with his fingertips like a meditating guru. This baby chose us to be his parents and he was our greatest teacher.

Jemma Neville

The NHS affirmed the honour with security passes stamped PARENT. I wore my badge day and night, believing it to have magic powers. I clipped the plastic wallet onto the waistline of my pyjamas, making its metal clip dig uncomfortably into my hip.

The institutionalisation of the hospital and its grounds encouraged my increasingly mad-woman behaviour. Its rules goaded me on every corridor. Keep left at all times, walk clockwise, always use the same plastic cup, wash my hands for exactly 20 seconds, wash my hands again, stay safe to protect the NHS, avoid catching sight of black crows and do everything, anything, to save my son.

I see myself now in the photographs we took as a new family and I look haunted. The rings around my eyes are black with worry. The worry was real. Presented with irreversible, multi-organ failure caused by multiple interventions and on medical advice, we had to fulfil the ultimate parental responsibility and let our baby bird, named Wren, stretch his wings and fly on without further suffering.

The doctors were unable to tell us what caused his low birthweight. Months later after a review and many internal examinations, blood tests and samples from me, they concluded that ours was a case of “extreme bad luck”. I pored over volumes of medical notes and the clinical studies I found online with the highlighting fervour of a former law student but could find no answers – just one of those (under-researched) things that happen to women. Around 60,000 babies are born prematurely in the UK each year and placenta health seems a particular mystery.

As we nodded for the nurses to remove our baby’s ventilator tube, I made certain that the window of our family room in the ward was open, or as far open as the institutional security latch allowed. I had first heard the dawn chorus outside after a dark night of labour and needed to hear it again at this other passing from one world to the next. For it is through an open window that air flows between the known and the unknown, from where we have come from and where we will go. I believe that there is something of all of us mixing in the free-flowing air.

Beyond, the outside world of a cold November morning was still turning, inexplicably. A world replete with carpark, construction workers, smoking patients huddled in dressing gowns and presidential elections. But a portal too onto trees, blue skies and the sound of birds. Recalling the other side of the window glass, I can describe every inch of the hospital room, as a hostage might their former cell. Sitting atop the bedsheets, nibbling on our nightly dinner of supermarket sandwiches, we had been hostages to hope and then despair.

Hope is the thing with feathers…And sore must be the storm that could abash the little bird, wrote Emily Dickinson, a poet who knew about illness, isolation and open windows.

Little birds sing for mating calls, to warn of predators and sometimes, it seems, to celebrate the joy of life itself. During the first UK lockdown in spring last year, people remarked upon the loudness of the birdsong. Something seemed to be coming awake, coming alive, that we had not known before. Free from the noise of commuter traffic, the hedgerows and flowerbeds of suburban streets were reclaimed by the comings and goings of the birds and the bees.

In common with couples across the land, we spent the unseasonably warm spring days working and playing from home in our small back garden. We made bread (chapatis in our Scots-Pakistani house), flowerbeds, ugly clay pinch pots and dreams. We dreamt of becoming parents and we made a baby. And so, amidst a global pandemic when nothing went as expected or hoped for and prolonged expectation became a kind of stormy suffering itself, we were expecting an everyday miracle.

The months swelled from one season to the next and so did my belly. Early in pregnancy when the expectation was still new and private, we walked along the same river pathway that I would later come to associate so strongly with Wren’s arrival. We reached the sculpture garden surrounding Edinburgh’s Gallery of Modern Art and high on the excitement of a secret, we ducked beneath the closure barriers and took off our shoes to feel the springy moss underfoot. The mounds of the Landform lawn mirrored the curvature of a heavily pregnant woman’s stretched stomach. I didn’t know then that my own hillock was already failing to nurture the seedling within, but I remember noticing that the much-photographed neon sign above the gallery pillars had a blown bulb at the letter ‘R’ which made the message read Everything Will Be Alight.

Seven months later, our dreams were in flames. Maintaining a bedside vigil and crumpled into blue bucket seats at the neonatal unit of Edinburgh Royal Infirmary, my partner and I were sleep deprived and delirious. Our adult-sized arms were scrubbed raw with high-strength sanitiser and squeezed through the plastic doors of incubator Number 2 to reach Wren and his tiny brown limbs, each punctured by IV lines. I would have squeezed my whole body through the oval-shaped portholes – not dissimilar in shape to a birdhouse, or a cage – to have swapped places if I could have. For this is what it means to be a mother, the physical embodiment of worry and sacrifice. And to blame yourself when love and care aren’t enough. Standing around the highly clinical nest, consultants told us that although impressed with his progress, our son was “not out of the woods yet”.

Baby Wren, remained within and from the woods. Named after the songbird common in urban back gardens, our tiny brown bird had more courage than any eagle. He was a real King of the Birds. I learnt the folktale about the eagle and the wren from a storybook read at his bedside. It was only later, in an ornithology guidebook, that I read that wren chicks typically remain in their nest for exactly 19 days. Coincidences are everywhere when you seek them out. And I did seek them out because I wanted to know and imagine everything I possibly could about our beautiful boy who migrated too soon with his shrill cry. Something deeply out of the ordinary had happened. Like the mother hen collecting bits of moss to line a nest, my primal instincts told me to stay busy and alert.

Hyper-alert to danger in a state of fight and flight, I learnt the names and dosages of all the drugs prescribed and the meanings of the many flashing alarms and levels on the incubator monitor. I learnt to anticipate the severity of bad news the doctors were about to tell us by their look of embarrassment at the state of a counselling room which also doubled as a staff room and often had chocolate bar wrappers on the floor. I came to know this place as the bad news room. I could tell which nurse was approaching from a whiff of perfume or the particular sound their trainer grips made sucking on the floor. And I knew the names of all the other babies in the unit from the labelling of milk bottles in the fridges.

Every three hours, in the windowless cupboard marked “the expressing room”, I attached plastic suction pumps to my nipples. For the allotted 20 minutes of mechanical pumping, I stared at the wall in front of me on which there was a poster showing a large, full-term baby happily enjoying his mother’s milk and the caption “breast is best”.

In the small, dark hours, student midwives helped squeeze and massage my breasts to get the milk flowing. I wonder now about which of these kind, strong women had the job of emptying all of my bottles of expressed milk down the drain when it became surplus to requirement. All the empty plastic bottles with my handwriting marking name, time and date of birth.

Hope is the thing with feathers

That perches in the soul,

And sings the tune without the words,

And never stops at all,

And sweetest in the gale is heard;

And sore must be the storm

That could abash the little bird

That kept so many warm.

I’ve heard it in the chillest land,

And on the strangest sea;

Yet, never, in extremity,

It asked a crumb of me.

Hope is the thing with feathers by Emily Dickinson

Today, triggers for post-traumatic stress still lurk. They appear in the parent and child spaces in carparks, in the images of ventilated Covid patients on the TV news and on suburban streets as I dodge armoured prams mounting pavements. I feel like I’ve been through a war. A war that stole my son and nearly took my own life on the battlefield. Wanting to have another baby means sending this shell-shocked, ageing mother back into the line of fire without pause for recovery.

I’m not the naïve, fresh-faced recruit I once was. I feel much older. Not in a biological clock-ticking way but in a proximity to mortality. I have the sense of both being reborn and of part of me having died alongside Wren. In the morphine-induced fug of second-stage labour (injections were given to try to slow things down), I was aware of a nurse and my partner on either side of the bed stripping me, with military efficiency, of clothes and personal belongings. A nose-stud that I had worn for decades was swiftly removed. My arms were lifted upward and a surgical gown tied at my back as I was rolled onto a trolley for the journey to surgery. Except that we never made it that far. Labour progressed too quickly and the only option was to risk pushing out a breech, pre-term baby. I locked eyes with one of the army of strangers surrounding the bed and did exactly as commanded. Blood pooled on the floor around me.

Later, bereavement counsellors told us that routine and ritual can be soothing in recovery. The ritual of preparing and performing for a funeral did provide a temporary focus. But choosing songs, writing the obituary, selecting a coffin from the funeral home’s catalogue – these aren’t things that any parent should expect to do. Outliving children is so much beyond the normal, natural, way of things that there isn’t a term for it, at least as far as I am aware of. The loss of our grandparents, then parents, and perhaps partner is an unavoidable pain that we know is coming but pretend otherwise to keep functioning.

We speak of widows, orphans and childless couples. But what is the term for parents whose arms are empty like fields after a harvest? Is this a fallow period? Metaphors abound because “there are no words”. This was the recurring sentiment written in the many sympathy cards we received. We kept each of these and filed them away in a memory box together with locks of hair, footprints and photographs. Death, the future-thief, had crept into my life and snatched what was most precious to me. I no longer cared for the present and so boxed up the past.

Perhaps cultures less in denial about mortality than our own have an expanded vocabulary that affords recognition to the anomaly of infant death. After all, baby loss was a more common reality generations previous, before the existence of obstetric and neonatal specialisms, and it remains so in other parts of the world. Those who walk the strip-lit, keep-left corridors of the NHS everyday know the anomaly. Nurses found me a private room on the maternity ward to shield me from the other mothers with babes in their arms. And my postnatal leaflets are stamped with a butterfly, the administrative code for fragility and transference.

My body was confused too. Breastmilk continued to flow down my chest for days after we returned home and had cleared away the debris of tissue-wrapped babygros and cot. There was no postnatal yoga or herbal baths for my sore, heavy body. I wanted to be as expressive and raw as a war-torn woman after a bomb blast has ripped through her home. I wanted to beat the ground and my limbs in self-flagellation. Instead, I took scissors to my long hair, leaving behind spiky tufts. I was inarticulate and fumbling; desperate to convince my wreckage of a postpartum body that I was fit and strong enough to get out of maternity leggings and conceive once again on the frontline of parental service. I hand-expressed colostrum over the bathroom sink in private, to relieve the discomfort of engorged breasts and to spare my partner from the sight. Most of all, I felt responsible for inflicting emotional wounds on those around me and wanted to atone somehow. I kept apologising, as frightened women usually do.

The day we came home from the hospital my partner declared that it was the first day of the rest of our lives. Writing about hope, grief and death, Emily Dickinson described the same sentiment as opening every door until the dawn comes. With the door to a new year wide open and the coronavirus vaccine rolled out, most have gladly turned their backs on 2020. People are moving forward, moving on with their lives. Restrictions have lifted and people are mixing and touching again. For us, life looks familiar but nothing feels the same. Everything is over-stimulating and overwhelming. In every family photograph saved on our phones, we are in facemasks and the backdrop is intensive care. It will always be this way because there can be no more photographs.

In the long hibernation of closed, slammed doors and winter, my partner was mostly angry and I was mostly sad. We got through muddy milestones like our due date, first Christmas and first snow. Then I had a panic attack in bed hearing the midnight countdown on New Year’s Eve. The noise of cheering crowds from the street outside sounded like the alarm on an intensive care monitor when oxygen levels fall below a safe level. I gasped for air. And I wondered what newborn babies dream about.

Months later and day by day, we have gradually picked up the pieces of our old life. We both returned to work full-time. My partner owns a café and the discipline of keeping a business afloat brought him distraction. Well-meaning friends said “Let me know if there’s anything you need?” when what we needed was our baby back. I found myself apologising for making them feel awkward. Some of the same people who most enthused about our pregnancy news were conspicuously absent in grief. Some neighbours couldn’t look us in the eye. I chose to lean into the love and support of those who showed up and weren’t afraid of the madness of loss. These are the people who dragged me out exercising in the rain or left cooked meals on the doorstep. These are now my people. Perhaps, like the befrienders at my local baby loss charity Held in our Hearts, these are also people who have known something of unexpected loss themselves. I can trust them.

With the arrival of another spring, I heard the dawn chorus again. The country emerged from lockdown. And I accepted that I won’t always feel locked down in my own body. My hair grew back in. We moved house and set up a bird feeder in the garden. We have become unlikely twitchers. I wake to the sound of birdsong, rather than alarms. Blackbirds, bluetits, sparrows and king of all the birds, wee wrens, are in full voice.

I want to tell people about my son and am grateful to have met him. I still struggle with trust in healthcare but accept that good people do their best. If advances are made in maternal care and research, this will be hopeful. We will try again.

And here is a curious thing – I keep finding tiny feathers. I find them, one at a time, on jumper sleeves, park benches, hedgerows, inside books and everywhere I choose to look. When I cradle one in the palm of my hand, I am here, not away.

In September, after consultant-led care, Jemma Neville gave birth to healthy twin babies but says her family remembers their older brother, baby Wren, every day.

If you would like to support charities working to improve outcomes for families; Tommy’s funds research into pregnancy complications including prematurity: www.tommys.org and Held in our Hearts is an Edinburgh-based bereavement charity: heldinourhearts.org.uk

This essay was shortlisted for the inaugural Anne Brown Prize at the Wigtown Book Festival earlier this year.