TRIGGER WARNING: For those experiencing prenatal anxiety, this piece covers a termination due to results of a pregnancy scan and may trigger anxiety. For anyone struggling with worries about the health of their child during their pregnancy, don’t feel you have to hide it, here are some suggestions from MIND about what steps you can take to find support.
I first started consciously trying to get pregnant at 32. I always knew I wanted a family, it wasn’t ever something that I questioned. I managed to meet someone wonderful when I was thirty after going through a divorce in my late 20s and we got on the train of baby-making pretty quickly. After 11 months of trying and conscientiously not drinking, I started a course of progesterone supplements and became pregnant with my little boy Grey, who is now two and a half. That pregnancy was characterised by low moods and I did an awful lot of research into the statistics behind fetal and maternal health; I imagined all sorts of awful outcomes.
When it came to my second pregnancy however, I was completely free from that heaviness. Instead of trying for a year, the two blue lines were something of a shock. I’d spent the summer getting over a nasty bout of Hepatitis A and had lost a lot of weight which had meant my periods had stopped. Before my cycle came back, I was pregnant. At the time, my only anxieties were around logistics—we live in a tiny first floor flat and the thought of a newborn and rambunctious two-year-old in our space was stressful—but in general, like most women, the ‘second time around’ felt completely different and far easier than the first. I still had morning sickness and vomited at least once a day for six weeks, but in comparison to the relentlessness of the first pregnancy, where one day I was sick over sixty times, it felt breezy. I went to exercise classes; I felt productive and glowy. It was the pregnancy I’d heard about from books and other women and I imagined I was going to have one of those cooing, relaxed babies who just sat in their prams while I drank rosé at lunch during my mat leave.
For both my pregnancies I’ve gone in for additional testing, so had done the Harmony test and a scan at 10 weeks in addition to the first trimester screening tests provided by the NHS. All results had pointed to another perfect baby.
At the very end of November 2019, I was due to have my 20-week scan, then the next day I was heading off on a long-planned a press trip to Sri Lanka. I remember feeling a little concerned about my toddler on that day as both he and my partner had norovirus, but I wasn’t worried at all that I’d be alone at the scan. I happened to bump into a girlfriend that morning who said she’d tag along to make sure all was ok, so I agreed, more because I wanted the company than because I thought I needed the support. After we arrived, everything progressed as normal, with the sonographer ticking everything off. I felt relieved – because I’d been so poorly I’d been worried about my folic acid levels—but after half an hour she told me to clean the gel off my stomach and sit up for a chat.
Very slowly and clearly, she then told me at the end of the scan she had found some serious anomalies with our baby. The long bones were bowed and drastically shortened in the legs and arms; it appeared that the baby had a genetic condition called skeletal dysplasia. While she couldn’t say which type (there is a broad spectrum of over 300 variants, impossible to diagnose on a sonogram), she said it appeared to be at the severe end of the scale.
“I knew immediately that we would terminate, though I didn’t want to admit that to anyone, least of all myself. There must have been a mistake, there must be a solution.”
I’m sure wailed, but all I can really remember was feeling like I was having a panic attack and that everything was moving at warp speed. My girlfriend got me into a taxi back home; the phone call telling my now very worried partner the heartbreaking news was the worst of my life. I knew immediately that we would terminate, though I didn’t want to admit that to anyone, least of all myself. There must have been a mistake, there must be a solution. It was four days of mental agony until we managed to get in for a confirmation scan with a NHS consultant and when the initial findings were confirmed and it was agreed that the case looked severe and unlike any of the common variants of skeletal dysplasia, it cemented our decision. Our consultant said she couldn’t say whether the condition would be compatible with life, but either way, the disability would be extreme and incurable. Six months down the line, we found out that our baby had a totally different genetic condition, not related to skeletal dysplasia, but that was the information we were given at the time, providing a good example of how sonographic diagnostics can only often only offer approximations.
From the moment we decided to go ahead with the termination, it all progressed very quickly. We did an immediate amniocentesis to retrieve genetic material from our baby to offer more clues for the future. I have only snapshots of it all happening. Trying not to watch our baby’s heart still beating, noticing the consultant’s Hermes Kelly with a silk scarf wrapped around the handle, obsessing over one ceiling tile slightly off-kilter with the rest. The amnio was very uncomfortable and I still had a protective instinct which worried about the needle hurting the baby, even though I should have realised it didn’t matter any more.
“It’s estimated that around 3% percent of babies will have some kind of genetic issue”
We were then led into a little room with lime green office furniture and given a pill to take which would start the termination process, with a return to the hospital and a second pill to come 48 hours later. Every hospital has one of these rooms for parents who receive bad news at scans, they’re just one of those things you never notice until you have to. Because I was over 20 weeks along, the NHS only offers medical termination – giving birth naturally – rather than surgical terminations where they surgically remove the fetus while you’re under anesthetic. Some of the advice was a bit confused between the different doctors, but later I found out that the first pill would most probably have killed the baby before any other steps were taken. I thought I’d felt the baby move often in those two days between pills, and every time I had been in absolute bits. It turns out that even if your baby is dead, you can feel the body moving around the amniotic fluid. Sorry if this sounds ghoulish, but I’m writing this for any other woman who might have to go through it— I wish I had known that the prods weren’t our baby trying to communicate with me, to convince me not to do it; I wish the doctors had warned me about that.
We arrived at the hospital to go to another special room, this one a delivery suite with a foldable double bed, right at the front of the maternity ward. That is tough because you see other women coming in ready to drop with their babies and I could hear newborn cries at times over the stay. I don’t know what the answer to that is, because obviously the labour ward is where the labour doctors are, but it was very hard to be in that environment while giving birth to a lifeless baby.
Because it was pre-Covid, my mum could also also be with us, which was something which gave me a huge amount of comfort. Like everything in hospital, there was then an emotionally draining wait before a couple of cannulas were put into my hands and I was given a second pill which started the birth. I was already two centimeters dilated and was told that my relatively recent birth 18 months before meant that we could expect labour to progress fairly quickly. I chose not to have an epidural as I was told there were increased risks with second trimester births and instead opted for a morphine drip. I closed my eyes for about an hour then woke with contraction pains, so started pressing the morphine button. Very soon I realized it wasn’t for me as I vomited and felt entirely disorientated and not in a way that felt in any way relaxing, so I stopped using the pain medication and just used the breathing techniques I’d learnt to manage the contraction pains. About forty minutes later I felt the urge to bear down and after three pushes, our little one came out, still, but warm.
Giving birth to a silent baby is something you wouldn’t wish on any other person in the world. Even though I knew it was coming, it was the most soul crushing moment of my life. I felt the weight and heat of the little body on my leg and I knew that I would never get over that. I still think about that warmth, simply I think because it was a sensory moment in the midst of a very clinical experience as our skin came into contact. Your mind goes to all sorts of places and mine just imagined what it must be like for mothers who have been through miscarriages and losses time and time again and perhaps didn’t have a healthy child at home like I did. I thought of how fortunate I was; I thought of their strength, what women will go through to have a family. I thought about all the other women who had been in this room and how they had managed to carry on. I was awed and weighed down with a feeling of our collective sadness. I have tried so hard over the months to remember that we are not the only couple who had been in that room to help shoo the claw of bitterness away.
When you’re terminating, you have to make a lot of decisions before you give birth, one of which was whether or not you want to see your baby afterwards. For all the decisions there is no right or wrong answer, you just have to do what is the best thing for you and your family. The midwives did try and steer us a couple of times to see the baby, worrying perhaps that it would be something we would regret, but my partner and I had decided that we didn’t want to. Firstly, because we knew we would only ever remember the corpse instead of the life we had held in my body and also knowing how I deal with things, I realised the visual power it would have held over me. Even in the eye of the trauma, I knew I had to prioritize my own mental health going forward from that day. I had a young toddler to be there for and I knew in my heart that cradling our baby would make everything harder for both my partner and I. To help you make the decisions, you are given a booklet showing what it would be like to see your baby and it’s suggested that you take pictures as keepsakes, if that is what you want. There is nothing strange about making either decision, we are all built differently and what would be the most deeply comforting thing for one person could be incredibly upsetting for another. But certainly, people don’t talk about this decision, it’s almost as if there is shame on both sides—shame that you didn’t hold your dead child on one hand, an unease that you took what might be seen to be morbid pictures of your dead child on the other. That is one of the things that I think we need to shine a light on through these kinds of discussions, because whatever decision you make is normal and right, in the most harrowing and abnormal circumstances.
“In the U.K. at least, the focus at 20-weeks is finding out the sex and most people don’t contemplate that in a few days they might not be pregnant anymore.”
That decision, like the 50 or so choices you make in the process, are presented to you when you take the first pill. It means you have 48 hours to make extremely full-on conclusions as a couple. While I don’t want anyone to feel scared, I do believe that knowledge is power and some of these discussions could be had more calmly and with a clearer head in less traumatic circumstances. Culturally, most of us have internalized the message that if you get through the 12-week scan, you’re on the home straight, or into the ‘safety zone’. Amongst the women I’ve spoken to who have had my kind of experience, several went to their 20-week scan without their partner too, because they just presumed everything would be ok. In the U.K. at least, the focus at the 20-week scan is on finding out the sex and most people don’t contemplate that in a few days they might not be pregnant anymore. I 1000% understand that the emphasis has been on not worrying pregnant women and this kind of information is obviously massively anxiety-inducing. However, I do think the pendulum needs to swing back, because the lack of understanding about what sadly can happen makes the shock all the more palpable. The fact that so many people don’t discuss or even know which decisions would have to be made in such a short amount of time only compounds the stress. We have no expectations of a not-perfect experience and that leaves you feeling whiplashed and totally disorientated.
It’s estimated that around 3% percent of babies will have some kind of genetic issue*. To put that into perspective, that’s 1 in 33 pregnancies. There were 34 girls in my school form, so if every woman in my cohort went on to have a single child, that would make me the only one in my class who found out about the decisions. But in every class at my school, and every school in the country there will be another me or there abouts. So often, you are told that it is ‘incredibly rare’ for there to be abnormalities and of course, many of the genetic problems uncovered will be far milder than our baby’s. But even if the issues are mild, you may have to have these heavy discussions and I can’t be the only one who thinks that one woman per school class isn’t exactly rare. Rare to me is being struck by lightning. I personally know four women who have been through the same and they’re just the ones who have told me. In the UK around 0.5% of births are terminated because of fetal abnormalities*, which is around 1 in 200 and only a small proportion of the one in four babies that are lost for all reasons. But it’s still over 3,000 families a year. Because the messages you have been given make it almost inconceivable that it could happen to you, you cannot help but feel like a complete and utter freak, a physical failure, a total and utter outlier when it does. I kept wondering who all the talk of how our rare experience was for. Did people keep saying it to reassure themselves? Talking about how ‘rare’ any tragedy is doesn’t make it less tragic, it only serves to minimise the experience—it’s almost as if you’re being told your situation is so statistically insignificant it can’t even be acknowledged.
As well as holding your baby, you are also presented with the idea of making a memory box full of keepsakes along with the photographs—prints in clay of your baby’s hands and feet and so on. We were asked if we wanted to be present at a burial or a service with all the other families who had lost babies that month, if we wanted a post mortem and if so which parts of the body would we were happy to have assessed. You have to sign a form saying part of your baby’s brain or tissue can be kept aside from the rest of the body. There are decisions about whether you want to name the child for records and memorials, whether you want to keep the ashes from the cremation, whether you want to organise a separate service with a small coffin. Aside from the physical feeling of emptiness and mental fug, I was so overwhelmed by this litany of choices. However, I knew I was also lucky because my partner and I agreed at every step. Other family members had wanted to see the baby and felt disappointed in our decision, so I can’t imagine what those discussions might be like between a couple if you weren’t aligned.
No-one ever thinks it will be them. Why the hell should I have ever thought it would be me? I’m fit, healthy and no one in my family has ever had any genetic issues and I wasn’t over 35. My partner is four years younger than I am, neither of us have ever touched drugs (though we both do drink alcohol, I hadn’t had a sip for months as I’d been so poorly that summer). I already have one perfect child. While I don’t think we ever need to overestimate the small chances that things might not go to plan in a pregnancy, I do think there are conversations couples should have just in case the worst were to happen, because there is a lot to think about on the spot.
After the baby was taken away I was asked if I, “had a blanket for her.” That was the only moment where the care we were given made the situation worse than it already was. Firstly, we hadn’t known the baby’s sex and had asked not to find out at the scan. As I’d always wanted a little girl I felt like my heart had been squeezed from inside my ribcage, the grief of knowing she was a she added another massive, massive layer of pain for me, one which has stayed with me nearly a year on, in a way I know it wouldn’t have if the midwife hadn’t inadvertently mentioned it to us. Secondly, I hadn’t known I was allowed to bring her anything. The guilt and pain that that one question has bored into my fabric is something I can’t convey. I had nightmares about her being cold in a metal morgue for weeks. I can’t help but cry when I think about how I left her without anything to protect her and I still feel so irrationally and completely guilty about it. I know she wasn’t there anymore, but I will never get over that feeling that in the moment that I let her down so completely without even a blanket to let her know how much she was loved.
“The grief around a loss due to a birth defect is complicated because of the febrile conversation around any kind of abortion.”
Losing a baby is so hard in any context. There is no hierarchy of loss, every and any loss can be devastating. However, the grief around a loss due to a birth defect is complicated because of the febrile conversation around any kind of abortion. Dealing with the guilt of terminating a baby that you so desperately want is something which is so hard to talk about because the cold truth is that you agreed to kill your child; you signed the forms, you took the pills. A small voice in your head never stops saying that you gave up on your child, even if you know that they wouldn’t have survived. No-one wants to use those words, my family even get angry with me for speaking that way. There is a funny thing around the semantics of it all – it’s termination, not abortion and many people in the context of the heated debates prefer to say they miscarried their baby in a way that conveys they had no agency in the loss, instead of talking about the decisions they had to make.
For me personally, I would prefer not to use euphemisms to obscure what happened, because doing so would suggest that I am meant to feel shame about what happened. It goes without saying that I would have done anything to not have done it. I think about my little girl all the time, she holds a little string at the back of my heart which grows taut at every joy and catastrophe, things both little and big. As I am an atheist, I neither have the support of faith or its judgements about my choices to contend with, but I felt for my personal moral values, it was my only decision. I understand that others have a completely different outlook on that and respect every choice every couple makes. But even though I still feel we made the right decision, it doesn’t stop the fact that I couldn’t save her. I was her mum and I couldn’t protect her and that is something that every mother who loses a child, no matter what the circumstance will recognise. Ultimately, I have to hope she knew that we chose to live with the pain of not having her, so she could be spared even a second of the painful life which awaited her.
We now know that she wouldn’t have survived birth, but at the time we didn’t have that information. I would be lying if I didn’t say that knowledge had changed the way I felt about my guilt, knowing now that nothing I did changed the final outcome. But in honesty, it didn’t dramatically shift the paradoxical emotions and burden I carry around our decisions. It is something I hope I will come to peace with over time but am aware that it is something that may never entirely heal. What does keep me awake is the knowledge that the right to make these decisions isn’t afforded to all women and families.
That night was understandably horrendous. I kept waking up and replaying it and remembering the heat and weight on my leg and thinking about my little girl and the hopes and dreams I had for her. However, instead of erasing my memories of that room, I’ve held on to them tightly. I didn’t keep pictures of her, but I kept little things that I stole from the room and they will always stay with me. I didn’t make the kind of memory box the pamphlet suggested, but I didn’t leave the hospital empty handed. There is just no right way to do any of this and if you are one of the three thousand reading this, know that whatever you did in that room is right and understandable and yours. Anyone who hasn’t been through it can fuck off with their opinions.
After we were discharged, we made it home to our son. Trying to stay steady for him in some ways helped me back to emotional balance, though at the beginning it made it feel impossible, because all I wanted to do was lie in bed and let my grief swallow me. I pushed him around my neighborhood in his buggy for hours in the freezing December air crying silently, safe in the knowledge he couldn’t see me. In general friends, family and acquaintances were incredibly kind and offered any support they possibly could, but some friends who I had thought were important in my life turned away from us. The loss of our baby was never mentioned, they didn’t contact us for months and then we they did or when we bumped into each other, they acted as if it hadn’t happened. I understand it is really hard to hear about difficult and triggering experiences of pain, there are few things worse in life than losing a child and looking our worst fears in the face is hard. But to the friends who had the courage to be there for us and not just pretend it didn’t happen I will be forever grateful, because ignoring it just makes you feel that what you went through needs to be kept a secret and that can cause so many problems in the grieving process.
“My milk had come in the afternoon we made it home – you’re given another pill to stop it, but I was lactating for a baby that didn’t exist for about 10 days and that cut me deeply.”
After the worst of the bleeding stopped—for me that was only a few days—we decided to go to be with my family in France for a week to get away and during that time, the shock and adrenaline began to wear off. Day after each passed. It wasn’t like I sat around in a darkened room and I still rolled my eyes at my step dad’s bad jokes, I never did what I imagined one is ‘meant’ to do in this kind of circumstance. I did cry, but I also laughed. I was however, trashed both physically and mentally. My milk had come in the afternoon we made it home – you’re given another pill to stop it, but I was lactating for a baby that didn’t exist for about 10 days and that cut me deeply. My stomach looked very slack, of course and then I think because I couldn’t eat much, I lost weight too quickly and with it being a second pregnancy, still have a lot of extra skin. To anyone that is offended that I care about the way I look after losing my child, I didn’t stop being myself because our baby had a genetic problem. My character didn’t just disappear overnight, I’m still a bit vain and body conscious. I also don’t think it’s hard to understand that the last thing you want to see when you lose your child is an obviously post-partum body. Any reminder is awful.
Ten days after delivering our little girl, I took a work assignment in Rome. I know that sounds too soon and suggests I wasn’t practicing the right self-care. But for me personally, to be able to run away to the job I love offered succour and reminded me that I wouldn’t be defined by this tragedy alone. I’m not saying anyone else should throw themselves into work, I’m just saying that I did, and it was the right thing to do for me. The only advice I would give is to do exactly what you want, don’t try and follow some imagined manual about how you’re are supposed to grieve your baby or give a fig about what anyone else tells you to do. They are not you, they don’t know how you are going to put the shattered pieces back in place. I have always turned to work to drown out my despair, I don’t care if that’s not ‘healthy’, all I can say is that I found my own way back and work helped. That Christmas, my partner and I also stayed in a miniature air bnb close by to my in-laws and after the pressure of having to keep faintly jolly for the festive season without our baby, we used it as a sanctuary to reconnect and have a little time away alone to talk. I feel like I left a layer of my heartbreak in that little house, it’s another thing I’ll never forget and that time together was something which in retrospect feels very important.
This piece is so long and has so much to say, so I will write something separately about what happened next in terms of tests and next steps, because I know from experience that for some women that is all they can think about after you get through the initial stages of recovery.
I will finish by saying that I am ok. Within a couple of months, I could pretty much live my normal life, I worked, I looked after my boy, I met friends for dinner, I bought shoes and drank wine. I spoke to counsellors at the Antenatal Results and Choices phone line – the only charity dedicated to supporting families who have been through this kind of birth – but otherwise life did all start to slot back into place for me. Physically, I went to the gym and swam lengths and could fairly quickly ditch my maternity jeans. I cried a lot, and publicly, for quite a while. At work dinners and lunches, meeting up with friends, I just was often on the verge with fat tears just waiting to spill. Some of it was undoubtedly hormonal, but I suppose I didn’t try and hide my grief. I’m not sure if I know how else to be, but I do think that staring myself down in the mirror and not trying to disguise what had happened helped me get through the depths. That definitely made—and still makes—people feel uncomfortable. Maybe I’m selfish to inflict my pain on other people, I prefer to think it is the only way I know how to live honestly, but perhaps I’m deluding myself. I couldn’t write about it though, which is a first for me. A few magazine and papers asked me to, I just didn’t want to edit this dissertation down and have sensationalised pull quotes take the telling of the experience away from me. I still strongly feel that the media still doesn’t know how to deal with any of this sensitively.
As far as support goes, you can find loss groups online and people reach out to share their experiences, which offers an incredible network, but it’s not the way my mind works. Instead, I prefer to read and I found a dearth of shared experience around termination. I also discovered a lot of the literature of loss explored the issue from a religious standpoint and I found that difficult to connect with. So, I hope this helps add something useful to the resources available to anyone who is struggling with their own trauma. The one thing I was looking for was a discussion around the decisions and I couldn’t find anything where anyone actually gave an account of what they did. I didn’t read any woman say she didn’t see their baby, I didn’t read anyone who said they were ‘ok’ as in functioning, fairly quickly. Which I think means those things are seen socially as too private or too painful to share. Don’t get me wrong, it is hard for me to have these conversations publicly, my voice still breaks a little when I speak about it, but I just want to make sure that no one feels that they have to behave a certain way or that what happened to them in those little rooms must be kept a secret. I always feel like the pressure to keep things private exists because there is shame attached to a truth, I just hope that by hearing my experience, another family going through this will reassure themselves that they aren’t heartless, because without any other account like this, that is what I felt I must be.
If you’ve taken those pills and ended your baby’s life and made those decisions and been in that room, I just want to say I have been there too and while it ruptured my life, it has not, as I had feared defined it. You will move on; it will always be a part of you.
We scattered our little girl’s ashes in Hampstead Heath with the view of the lake and St Michael’s in Highgate. We visit her often, with our son. No-one wants this to be their story, but it is mine and I can’t blot it out, all I can do it share it in the hope that it adds another tiny nuance to our collective understanding of pregnancy and parenthood. For anyone who is going through, or who has been though something similar, I just want to say it wasn’t fair, it’s wasn’t your fault, it just happened. And you made the right choices, whatever they were.
Many thanks to Chelsea & Westminster Labour Ward, your care meant the world to us.
For anyone struggling with results from a scan, ARC (Antenatal Results & Choices) is the only national charity helping parents, grandparents and health professionals though antenatal screening and its consequences. I called the helpline and read through the resources they sent me, it provided a real support as it does for thousands of other families every year. It takes £60,000 a year to fund the service and last year they failed to meet that target. If this piece touches you and you would like to help families navigating this experience, please donate to the ARC. Five pounds pays for the helpline to support one anxious parent or couple, £10 pays for an information and support pack for a bereaved or expectant parent, £20 pays for the website for a day, providing essential information for parents and healthcare professionals.
*Out of 800,000 pregnancies each year, over 40,000 women will be told there is a risk their baby may not be developing as expected. – ARC
*It is estimated that 1 in 25 children is affected by a genetic disorder. – Genetic Disorders UK.
*Between 2 and 3 percent of pregnancies will be affected by genetic anomalies. – Current NHS guidelines
*Birth defects occur in 1 in every 33 births in the U.S. – CDC
*3,183 abortions were undertaken due to fetal abnormalities in 2019 out of 640, 370 live births (this doesn’t take into consideration the spontaneous miscarriages due to fetal abnormalities). – Dept of Health & Social Care, Office of National Statistics, 2019