At 35 weeks, Sarah Hughes's unborn baby inexplicably died. In this heartbreaking memoir she reveals why stillbirth is an experience no mother talks of – and how strangers finally taught her to live with the death

I became an adult at the age of 38 when I held my dead daughter in my arms. Until that moment my husband and I had led a breezy sort of life, taking nothing terribly seriously. We moved to New York, had two children in swift succession and raised them in a loving if chaotic household where nothing was so bad it couldn't be laughed off with a shrug, a bad joke or a fatalistic, "Oh well, it'll work out next time."

Then, a year ago, 35 weeks into my third pregnancy, my daughter died, and there were no jokes to be made. Many weeks after her c-section delivery, long after I had held her, and wept, and clutched the memorial box the hospital made for her with her footprints and her bloodstained blanket and the tiny hat, and wept more, I sat in my doctor's office and heard there was nothing wrong with Iris. No complications, no genetic issues, no explanation for why her heart simply stopped beating.

It seemed somehow fitting that she had died in January. The weather was bitterly cold and I took a grim satisfaction in how the bleakness mirrored my mood. It seemed only reasonable that the trees should be bare, the streets part-frozen and the skies a dull grey. I was secretly pleased that New York appeared to be grieving along with me; that the city seemed as frozen as I felt.

Yet it's hard to grieve when you have small children. My three-year-old daughter would strike up conversations with people on the subway: "My mummy's sad because our sister died" was a particular favourite, or: "I had a sister but she died in Mummy's tummy." Complete strangers would whisper: "Oh I'm so sorry," reach out for the briefest of gestures and then continue on their way.

My son, at 18 months, was oblivious to what was going on. He expected everything to be as it always was and so I forced myself to horse around, to take him to the playground and chase him, to read stories while he sat on my knee. Trips around the neighbourhood were fraught. Standing in playgrounds I would bump into people who had last seen me heavily pregnant: "Oh did the baby come already?" they would start to say before breaking off.

'My three-year-old daughter would strike up conversations with people on the subway: "My mummy's sad because our sister died."' Photograph: Neil Wilder for the Observer

At my daughter's nursery school one of the other mothers had been due around the same time. By coincidence her baby came a week early, on the day Iris should have been born. I found myself unable to talk to a woman who only a few weeks earlier I had had breakfast with once a week. Her daughter was beautiful. I couldn't stand to look at her face.

Worse was the news that a close friend was unexpectedly pregnant with her third child. As the months ticked by, during this period when the grief was supposed to lessen, I would only have to see my friend for my heart to feel shattered once more.

"The grief of A stillbirth is unlike any other form of grief," Dr Richard Horton, editor in chief of The Lancet, wrote early last year. Grief is hardly a competition, but Horton is right: stillborn grief is different. It's different because there are no happy memories to sustain you, no sense of who that person was and what they meant to you. Instead you're left grasping at something permanently just out of reach, that might have been, that should have been, that wasn't.

And no one tells you how to deal with that grief. They don't tell you how to react when you find yourself sitting on floral chairs in a dimly lit room in an avuncular funeral director's office discussing why even though he is waiving his fee, it will cost almost $1,000 for New York State to cremate your baby. Or what to do when letters start arriving from well-meaning social service groups inviting you to talk to grief counsellors about Sudden Infant Death Syndrome and it becomes clear they've mixed your dead baby up with another child.

Then there was the difficulty tracking down her baptism certificate: under New York State law a stillborn birth does not have to be registered, but I needed some sort of recognition that my beautiful daughter had existed. I couldn't bear the idea that she should leave no impression on this world. And so the Catholic priest at the hospital had baptised her and said we could pick up her certificate from his church. Unfortunately, in the turmoil following her birth, he forgot to tell us which church that might be. For months my husband Kris phoned different churches in downtown Manhattan, trekking out to each one; at one point we were given the wrong certificate. Sitting at home I cracked a wan smile: "This would appear to be becoming a theme."

According to the stillbirth charity Sands, 17 babies are stillborn or die shortly after birth every day in the UK; one in four stillbirths remains unexplained. In the US, the National Statistics Office reports that one in every 116 pregnancies ends in a stillbirth, roughly 26,000 stillbirths each year. Yet stillbirth remains one of the great unmentionable subjects, until it happens to you. Before Iris I knew only one person whose baby had died in the womb. Afterwards, I knew dozens.

The man in the local deli told my husband how sorry he was and added that his wife had lost a child in the same way; the receptionist at my GP's surgery said it had happened to her. My obstetrician, who had been such a calming, steady presence throughout the silent delivery, almost broke down the next day when talking of how his own child had been stillborn.

Almost two months after Iris's death I met a woman I knew vaguely outside my flat. "Has the baby come already?" she said, a smile spreading across her face. "No, she died," I blurted, unable to couch it in less brutal terms. We stood in silence. "I'm so sorry," she said, and then, grasping for words of comfort: "You know, they say when that happens it's probably meant to be." Unable to speak, I nodded and fumbled my way inside. In the hallway I screamed.

Because a lot of the time I didn't feel sad or depressed or disconnected; I felt really, really angry. Angry with people who were pregnant, angry with people whose babies hadn't been stillborn, angry with people who tried to empathise by talking to me about their miscarriages, angry even with those who were just trying to help.

With family and friends I was closed in, unable to talk, desperate for them to change the subject and move on. "How do you feel?" they would ask and I would think: "Awful, as though my soul has been ripped out of my body – is that what you want me to say?" Instead I would mutter: "Oh OK, not great, but you know…" and hope that they would leave me alone. I didn't want to share my experiences, to talk about how I felt, to discuss grief. I wanted to shout until my throat was raw and weep until my eyes swelled shut. I wanted to hit things and people. I even wondered if taking a boxing class would help.

All day I would sit at my desk trying to write upbeat entertainment articles. And each night once my children had gone to bed I would weep uncontrollably over my husband. I had no idea how to talk to Kris. He was so busy keeping it all together, because one of us had to. Going to work, putting the kids to bed, preparing dinner and then holding me while I wept. "I just want Iris," I would say. "I know, darling, I know." I wanted to ask him how he felt, but every time I formed the words my throat felt blocked. "Are you OK?" I would whisper in bed at night, knowing he would say "Yes" even if it wasn't actually true.

Like my daughter, I found myself telling complete strangers what had happened. Sitting with my son at his swimming class I silenced a changing room by announcing that my third child had been stillborn. Even as I said it I knew it was at best self-indulgent and at worst slightly unhinged. But I couldn't stop myself. I was that crazy lady, the one you'd cross the street to avoid, oversharing to such a level that even New Yorkers looked scared.

As the days crept on I increasingly felt as though I needed to control my grief, to contain it in some way. I was tired of weeping every evening. Tired of standing in the street with tears pouring down my face, unable to speak to well-meaning passersby. I was tired, too, of the niggling thought that maybe I wouldn't have coped with three children. Depressed, angry and shouting at my two living children, the creeping thought would worm its way into my head: "This is why Iris died – because you can't cope with two and you shouldn't have decided to have a third."

"There are books that can help you," my obstetrician had said that first awful morning when I woke in the hospital, my thoughts reduced to the phrase: "My daughter is dead." He wrote down a list. I glanced at the titles: When Bad Things Happen to Good People, Coping After Miscarriage and Stillbirth.

For most of my life books had provided the answer to all my problems. I had comfort novels for when I felt sick, fast-paced crime stories for those moments I didn't want to think, old favourites I turned to repeatedly throughout broken hearts and work disappointments, read and reread in good times and bad. But now I didn't know where to start. Comfort reads failed to comfort; new novels were put down one or two pages in; nonfiction seemed too real and fiction too unreal.

I walked in a daze to Barnes & Noble and sat on the floor surrounded by a pile of books with titles pulled at random from the self-help shelves. Books about grief and loss, books about healing and moving on, books specific to stillbirth. I flicked through the pages hoping for a jolt of recognition, a sense that the author understood how I felt. None of them worked. I turned to literary examinations of grief: Joan Didion and CS Lewis and Joyce Carol Oates. Yet these books, though often beautifully written, left me equally cold. This was their experience of grief, movingly rendered, but ultimately without meaning to me.

For the first time in my life books were failing me. I found myself unable to look away from newspaper reports of celebrities who had lost their children in the same way, reading endless articles on Amanda's loss and Lily's heartbreak. Yet even these similar sad stories, while filling me with a ghoulish sense of companionship, seemed removed.

'I no longer feel encased in sorrow.' Sarah Hughes with Iris's memorial box. Photograph: Neil Wilder for the Observer

I went to church, grasping at the Catholic faith of my childhood. The first day we walked in, leaving my two children with their grandmother, they were having a mass baptism. I left hurriedly, rushing for the door. My increasingly concerned husband suggested counselling. I sat at home day after day and willed myself to pick up the phone, but I never made the call. The thought of sitting in a room with strangers and discussing Iris made my skin itch.

Finally, and in desperation, I began to look on the internet. In the early days following Iris's death Kris had spent some time looking through sites dealing with stillbirth loss but I've never felt that comfortable online. I have no Facebook account, I'm not great at social media, and I've always believed if something truly dreadful happened I would have my family and friends. My mother, sister and brother travelled to New York in the aftermath of Iris's death. My father wrote me a letter so beautifully worded it made me weep. My closest friends crossed the Atlantic, taking precious time out of busy lives to sit with me. In return I barely spoke.

For all their compassion I craved the anonymity of strangers. I spoke a couple of times on email to Jess, who had talked about her experience of stillbirth on a friend's website. Her daughter was also called Iris and I started reading her blog, After Iris. Sparse, angry, often extremely funny, it made me weep, yes, but also laugh in recognition. From there I tracked down other sites and found myself increasingly in contact with other people whose babies had died.

Alice, author of the blog Stillborn, Still Standing, put me in touch with Rachel, who like me had had two young children before losing her third. Another friend passed on the phone number for a woman whose first child had been stillborn. A woman I knew in passing stopped me in a coffee shop and gave me the email of a male friend who had set up a stillbirth support group after the death of his child. Jess directed me to Glow In The Woods, the site for "babylost parents" she contributed to, and also to her friend Angie's beautiful, brutal blog Still Life With Circles, which runs the Right Where I Am project in which parents discuss the stage of grief they are at.

And suddenly the world seemed a little less frozen. It wasn't as difficult as going to a therapy group, but the result was the same. There were people I could talk to. When Rachel first phoned me we talked for more than an hour, veering between laughter and anger, as we discussed every last detail of our dead daughters.

My online acquaintances were generous with both time and advice. No question seemed too small or outburst too big. They had all been there; they understood how difficult it was to get through the day without crying, how great the struggle was between pulling myself together and letting it all fly apart.

For the next couple of months I emailed Rachel and Jess back and forth. Some of those emails were emotional outbursts. "I was thinking of you this morning – I don't know why, but the lovely weather is somehow making me feel even more sad," I wrote to Rachel in early June. Others were practical. "I can't decide whether or not to have a ceremony for Iris, what did you do?" I asked both of them on separate occasions. "Did you go to a support group?" "What do you think of counselling?" "Does this pain lessen?" "Do I even want it to go away?"

"It feels really odd to me that whole days go by where I barely think of Iris, and then I get this wave of extreme emotion and find myself howling hysterically," I emailed Jess in March. Her response made me feel that I might be able to cope with the pain. "It doesn't ever go away," she wrote, "but it did change for me. It shifted away from the hideous rawness I felt in the early weeks." I had the sense of some small but hopeful shoot pushing its way slowly through the concrete weight of my grief.

I still wanted Iris. I still dreamed about her, tried to picture her, imagined what she would have been like, but I no longer felt as though I was encased in sorrow. I still looked at the memorial box, but I no longer needed to obsessively go through it. Then we travelled back to the UK for a holiday and, in addition to seeing family and my friends, Kris and I were able to spend some time alone. We talked about Iris then, too, but we also talked about silly things and found ourselves beginning to laugh. For the first time in months I started to imagine a return to normality, to those chaotic family afternoons, to weeping with laughter and not loss.

Throughout it all I still knew that there was a community of people who understood what I was going through. I talked to them less as my grief became less overwhelming, but it helped to know that they were always an email away.

Jess was right when she told me that the pain would change. It has, and with it has come holidays and laughter and the bad jokes of old. Yet throughout it all Iris is still present, and I will not wish her away. For the 35 weeks that I carried my second daughter inside me I was gloriously, life-burstingly happy. I can not change her story, but I carry her with me still.

For more information on stillbirth go to uk-sands.org

Love and loss: four helpful stillbirth sites



Glowinthewoods.com

An online community "for parents of lost babies and potential of all kinds", that offers a space for them to share memories and thoughts, as well as advice for others. It also includes a helpful library of posts on practical matters, as well as book recommendations.

Stilllifewithcircles.blogspot.com

Poet and craftswoman Angie M Yingst writes about the challenges of mothering her two children, Beatrice and Thomas, while grieving over the loss of her second daughter, Lucia, at 38 weeks. "I walked into that hospital one kind of mother," she writes, "and came out a very different kind of mother."

Stillbornstillstanding.blogspot.com

Fashion journalist Alice Pullen kept a blog for a year after losing her son, Bear Hamilton, just before he was delivered. "I cannot remember what my life was like before Bear was born," she wrote two months after his death. "And to be honest, I quite like it like that." She now tweets at @alicepullen

Afteriris.wordpress.com

Jess lost her second daughter, Iris, in early labour in May 2008. She began this blog four months later and shares her experiences with a savage honesty and poetic flair: "There are irises everywhere. We shiver at each other, and pretend it was the wind that shook us."