Sophie’s story

No one tells you.

No one tells you about the pregnancy apps you’ll need to delete when you get home, the notes of baby names you’ll need to erase from your phone, the social media platforms you will need to come off to avoid your friends’ new babies, or the books you’ll need to put out of view when you lose a baby. Just that you’ll need to take time to grieve and to rest… why don’t we talk about miscarriage and loss?

I am 39, I have never been pregnant before and thought I had ‘missed the boat’. When I fell pregnant, I was delighted. We were delighted.

As I write, it’s 24 days since the day of our first scan when everything changed. I can barely believe that. 24 days!? It feels like an eternity but also no time at all. The scan was meant to put minds at rest, but we went in and were told that our baby didn’t look ok. To be precise, the sonographer took one look and said ‘well you have a living baby, but it really is quite abnormal’... she basically quickly said something about its heart being enlarged and then more about measurements, before quickly leaving the room. We were not comforted; nothing was sugar coated.

I hadn’t felt confident about the pregnancy throughout. I had a feeling something wasn’t right, though I am since told the jury is out as to whether a mother can sense or know these things. Either way that didn’t stop the world coming down around me. The ringing in my ears and the pain in my chest and stomach.

Clutching my stomach, wanting to protect the baby when I knew they were all implying it wasn’t good enough. I felt I wasn’t good enough and felt terrible for James, who had been so excited before going in, saying to my tummy that morning ‘we will get to see you today!’, proudly telling his dad the night before that he would get him a scan photo.

I felt like such a failure.

We were rushed off - past all the expectant mothers in the reception area, presumably awaiting happier news, to a small consultancy room where little happened. We were again told that something wasn’t right and that we were to come back the next day to see a consultant at 9 am.

I walked out of there like a waste of skin. James broke down in the corridor on our way out, we felt so upset and shocked. It was all over so quickly.

Yet our baby was still alive... we got home and every ounce of me tried to bargain with this. I howled and howled the deepest belly roar a mother; a parent can make for something lost inside. I felt despair that they were still there and yet the hospital was talking as though they no longer were. We told our families, devastated too, unsure what it all meant, and the inevitable googling took place. The writing was somewhat on the wall, but I couldn’t accept that.

The baby’s heart was still beating after all. I felt so sad for my little one and felt it was unwell. That night we tried to sleep, and we wept and sang to my tummy.

The appointment confirmed all our suspicions from the day before. Baby had a high chance of miscarriage (death), an enlarged heart and had not developed properly, with much fluid around its neck and now body.

‘We have grave concerns for the health of baby’, said the consultant. They asked if we wanted to look, I couldn’t. James did. Days later I asked James how it looked ‘like a little baby’, he said, ‘with little hands and feet.’ My heart sank. I never saw it.

We were presented with a range of options. No one could definitively tell us ‘do this’ and no one was telling me baby was going to be ok, or not. In fact, it was clear that baby was not going to be ok, but we had to somewhat read between the lines. The options presented were termination by surgery or managed miscarriage - the latter, where you take a pill to soften the cervix, to speed a long a miscarriage delivery.

There was another diagnostic route, to go to Leeds and have a CVS a biopsy, I think effectively to see what chromosomal issue it had. Even if we did that, the risk of harming the baby was high and also our baby, had other issues, too...

Despite this, we sat around for a day and a half deliberating what to do next. For me, though I am pro-choice I certainly couldn’t terminate the baby I wanted so much knowing it was alive, it just wasn’t something I felt I could do at the time. I wanted someone to tell me it definitely wasn’t going to be ok if I had to make that call. I felt so protective of it during those days. The few days and nights after our consultant’s appointment, I made a pros and cons list about termination and medical management. This is a very personal choice. I looked up the options, searching for research papers and data on what the aftereffects might be like, focusing on my mental health. I didn’t really think about the physical side. I also wanted for my partner to be with me and to feel safe was a big part of the decision. I wasn’t sure though and none of this felt right. I decided to go to Leeds and at least there I would get another scan and a second opinion.

We got to Leeds. Baby’s heart had stopped. I wailed and wailed. I think I almost kicked the bed and the computer over in the examination room. I remember the staff recoiling from me as they gave the news that ‘nature had taken its course’. I heard the wheels of their chairs recoil backwards to the edges of the room.

‘It’s my fault’ I said and shouted and wailed some more. James crying at my side trying to hold me, but I was violently kicking my legs. I was sure I had damaged it because I had been so upset. I Remember sinking into a well, hearing that the consultant saying ‘Sophie...’ over and over again, then reeling off some statistics about recurrence and that it wasn’t my fault.

It didn’t matter at the time because I didn’t believe him. I couldn’t hear him, and I couldn’t cope with it.

James at my side we went and sat in a room and tried to calm down. My baby had died inside me. I was totally confused and distraught. We did the inevitable walk of shame as we went past another row of expectant mums. I went to the car and we drove home. Crying and upset, we got in. I don’t remember much else.

On some level I think there was a sense after all the self-blame at that point, that at least, at the very least, I now knew, baby wasn’t going to be ok.

My goals turned from protecting it inside me to wanting to safely protect it leaving me. I felt as though it needed to be safely delivered to be at peace.

A day or so later, and after ages of deliberations, we went back to the unit and after 4 hours of crying and getting advice. I agreed to take the cervix softening pill. I just didn’t want to say goodbye and I was terrified.

We were informed of the process. That we would come back two days later to ‘deliver’ and that it was a special room, paid for by the charity Sands, more like a hotel room than a hospital room. I was told James could be there throughout. Even though I didn’t want to ‘deliver’, I was recommended this as the safest option for me...again, this is very personal and for some women, would not be the best route. I still don’t know if it was for me. How can you know?

I don’t know how we got through the next few days. I can’t remember what we did, if anything. I think a walk to the pond near our house maybe. I remember deep, deep sadness and fear.

We went to the unit on the Sunday after having the pill on the Friday. Nothing had happened between these dates. I was sort of expecting it to, but it didn’t which was good as I wanted to be in the hospital.

The room was like a sad hotel room. Leaflets about still and neonatal death in folders on the wall and something about photography of babies. I couldn’t possibly read these. I asked James to turn them over, so I wasn’t staring at them. Likewise, to cover up anything else that reminded me.

I knew why I was there; I just didn’t need it in my face.

…………………………

I couldn’t get things moving when we arrived. We did a COVID test and chatted to the midwife for hours before I could allow them to start the process. Maybe I had more questions than other people, but it just took the time it took.

I was told I would need to have a cannula in my hand for medication, they talked about an epidural in my back and that they needed to take a lot of blood before the process because baby DNA might be in my blood. I felt like a pin cushion, I felt like it was my fault. Why was it just me who was going through this, I felt like there must be something wrong with me? I became pretty upset by the language used, and sadly lost my temper a few times about how and why they needed so much from me. ‘We just want to check you’re ok, Sophie’ - for some reason, this really bothered me. I was just upset, and I have a predisposition for anxiety.

They couldn’t get my blood. It’s the pandemic and I have seen the sum total of 7 people in 2020 yet since coming into hospital I was now surrounded by a sea of hidden people, all in PPE and masks, and I think the end count was around 25 people over ten of which were involved in trying to get blood out of my ‘shy’ veins.

I found this aspect most distressing, as it went on and on, had I known I would have to have blood taken I would have advised them that no one would be able do it easily based on past experience. In fact, it’s always been a nightmare having any blood taken. It always has to be the most skilled professionals who do it. Sadly here, because of my anxiety levels even two of the top hospital anaesthetists had trouble and had to use ultrasounds to locate my veins. To be honest by this point, I think my body was in shock. I would urge anyone who has problems with blood being taken who has this process to spell that out to the hospital in advance to save on more stress and time. This easily made my experience 10x more traumatic.

You are told you will need a pessary internally inserted to speed along the process of a miscarriage. I was told that this could take 4-6 hours, but that if nothing had happened, they would give me a pill by mouth, and then if after a further 3 hours nothing was happening, I would have another and so on.

The pessary didn’t sound too much of a big deal but turns out it was 4 and involved the midwife spending some uncomfortable time down there, like a smear test, to place them literally on the cervix. I found this really uncomfortable. Once they were in, we just sat about for hours. This is when they tried to take my blood and we ended up preoccupied with that discomfort. I was getting more and more anxious, though my partner was there the whole time, singing to me, talking to me, playing me things online to try to amuse me. I think we even had some food. A shepherd’s pie even. I am not sure. I know being in hospital was the only time I legitimately allowed myself to eat white toast.

Nothing happened with the pessaries. I had to take a pill orally. This is when I became quite unwell. My temperature shot up to almost 40 and there were concerns about infection. I remember by this point being on a lot of pain relief and convulsing because of the fever - I was shivering and so cold, the muscles behind my knees had tightened - as I write they are not much better one month on - and I held myself so tightly.

Another 4 hours of shivering and shouting, still nothing had happened. I think I was crying shouting get it out by this stage, really scared. James was crying.

For some reason the midwife had to leave for an emergency, about the time when I would have been administered a third pill. I had a new midwife by this stage, and she was lovely. She looked a bit like my mum and I instantly felt a bit calmer with her. She wasn’t in the room when it happened. I was sick and I said to James I urgently needed to get to the loo. I had said I didn’t want to see the baby because I thought it would upset me too much, so the aim was for it to happen in the toilet or bed. James tried to carry my weight through to the bathroom, but we didn’t make it to the loo, a rush of blood flowed out of me, I felt hollowed out.

I thought that was it. All over the bathroom floor. James was holding me up, I was hysterical. Still with a temperature of 39 and shaking.

The midwife came in. I called her by the wrong name and instinctively hugged her. I haven’t even hugged my mother since the pandemic. I apologised and started worrying. She said, ‘we are fairly low risk’. Her stoicism amazed me. How are NHS staff low risk? They are incredible.

She was frantically looking on the floor to see if it was there while James still held me up. She said, ‘do you think it’s passed, Sophie?’ I said yes it must have and became very upset, if that wasn’t it, what the hell would it be like, I said.

She confirmed the foetus had dropped but was still sitting in me, she could see it. She advised me to cough and I did that a few times and then it was in the pan. I was horrified. I have never felt anything like it. A mix of relief and horror, really after the ordeal.

She went off with it and I laid down, passing large clots, some extremely large which felt like they were the size of oranges. I couldn’t look. They kept checking me, apparently you lose a lot of clots. I wasn’t to know but this would continue into three weeks on from the hospital. You start to normalise it all by then though.

They quickly sent a Dr to me, guess what, to take more blood. I couldn’t believe it after the nightmare of our attempts earlier and asked why, they said they needed to check for infection because of my fever and my temperature which wasn’t going down. The blood being taken felt like nothing at all after the miscarriage. Pain wasn’t on the same scale.

I remember then just lying there passing more clots. I think an ice lolly was given to me! That helped.

Midwife confirmed baby was in one piece in its sack. I cannot tell you how pleased, maybe even proud I was of this. I had been warned there might be issues, that some might come away separately, that the placenta might come away separately, but really wanted my baby to come out in one piece. And they had. I felt for some reason peace and calm over this fact. It is absurd the comfort we take but everything had changed. What a mother of an expected healthy baby might dream for her child was very different to the dreams and aspirations I had for the peaceful departure of mine.

What followed is a bit of a blur, it’s now maybe 2am and we had gone in at 9.30 that morning. We had to stay up to hear the results of my bloods, a GP came in to check me and said my liver was a bit off around 4.30 but that I just needed sleep and they would check again in the ‘morning’.

I became jumpy and got scared that we weren’t safe as James started to fall asleep in the room. I knew I was, but I was getting intrusive thoughts. The Dr said this was normal and to try to rest. He said no one could harm me. I felt assaulted though. In many ways it was the biggest assault on my body and mind I had ever experienced.

When we woke the atmosphere was different. A new midwife, this time Karen, came to greet me with a soft Scottish accent offering toast and tea. She said we will need to do more bloods and I immediately became scared, again.

She said we could wait and so we had our white toast. She was lovely, I found out where in Scotland she was from and probably went on again about my mum and grandma also from Scotland.

She started to tell us that the chaplain would be around from 11 to do a blessing if we wanted with our baby. That another midwife had done handprints, taken photos and prepared a small basked for the baby with a blanket in, if we wanted to see it. We agreed we couldn’t, I couldn’t. I wish I was strong enough, but I couldn’t. We agreed to have the blessing in the room with the chaplain and that they would put a blanket over its basket. Karen held and rocked it while the chaplain named our baby according to our wishes and said a few (secular) words. It was peaceful and calm, again I was proud baby was in one piece. It is so weird what comfort you draw. Perhaps desperately.

We sang to baby. Sophie’s rabbit, which is a folk song I was sung as a child. During pregnancy, I had sung it to my tummy many nights and in the nights, we knew we were losing them, we did the same. We also sang you are my sunshine. James kept singing it.

We wrote a note on the back of a photo of us for the baby. I called myself mummy for the first time and maybe last time in my life.

I felt and feel like it’s mum though. I would do and did do everything to protect it. James did everything to be their dad, too.

The photo and a small gift that my dad had given us for Christmas, went with the baby and we were told it would stay with it always, even at the post-mortem which we were told would be in Leeds. I didn’t like that it was going away, but they told me a funeral director would take the baby and bring it back two weeks later. Again, some comfort to me.

What followed was all a little regulatory. We were suddenly answering questions to fill in forms about the post-mortem and our wishes in relation to the human tissue act. I felt that everything should be done to find out why and also that any remains that could not go intact should go to medical research and training. How could I not?

More bloods were taken and as I became more and more anxious, I was advised to start thinking about going home. For some reason I had grown accustomed to being in that room. But it wasn’t where I should be now. I had to face home.

We were given a tea light from the chaplain, and a memory box with the photos in and the handprints. I still haven’t looked at them.

…………….

I am now writing 4 weeks on almost from the scan and 3 from the managed miscarriage. The weeks that followed were hard. They are hard.

The first week my mental health was appalling. I couldn’t be alone, I needed accompanying to the loo, to do I anything. I needed to know where James was at all times. I couldn’t listen to him on the phone and any slight light-hearted comment from anyone made my blood boil.

I was having intrusive thoughts, mostly about being attacked, sometimes these thoughts were sexual in nature sometimes physical. It was very upsetting. I was rung several times in the first week, by the mental health midwife and by bereavement. A weird mix of future and past.

My thoughts were racing the first time I spoke to the mental health midwife, I think she didn’t know what to make of me. The next time we spoke she commented it sounded more like grief but the third time, more like PTSD like reactions. I was referred with my blessing to the community mental health team. I am still waiting to talk to them. That referral will involve a triage over the phone and took 3 weeks to turn around. Not bad, I guess especially for mental health in this country.

My physical symptoms seemed to take over in the meantime. I was in agony for over a week with bowel problems and more clots, I ended up back in the labour ward and GP getting checked over. It was all very scary. I am still bleeding; it might even be a period now. It is hard to know.

My moods have been horrendous. What is it they say about a grief curve? Denial, anger, etc... well, anger, yes.  I had so much anger. I had no idea how much. Somehow this emotion was the easiest to access. I would swing and am still swinging between numbness, upset and anger.

I am trying to rest. My sleep isn’t good, but I am starting not to expect anything of myself. How can we know how we will feel day to day, hour to hour about this?

The main thing I find is the feeling of isolation. Even from my partner. He can’t know how this feels for me. He is being pragmatic. He can also manage a very silly conversation. He doesn’t cry anymore. He doesn’t need to talk about it. I do and that’s ok. I am learning we grieve and deal differently.

I tried to tell friends. Most don’t know what to say and some say the complete wrong thing which makes you feel ten times worse. I had to stop talking a lot to people for this reason. Many of my friends have new-borns. Don’t feel bad that you don’t want to see or hear about this. You are only human. It is not your fault. They wouldn’t either.

I’ve been told I am doing quite well. It doesn’t feel it. I think it helps that I have had therapy in the past. I have tools and strategies for some of this, but I am not sure anything really prepares you.

I have had some lovely messages from people, some flowers and gifts. People who have experienced the same (only two) have come out of the woodwork and been the best support. I reached out to charities and found doing a few things helped:

We donated to SANDS

We named a star on the miscarriage association webpages

We named the baby and I have a necklace which is related to that name

We are planting a tree

We still have to consider the cremation, a final bye. We feel we said it in the hospital, but the bereavement team are keen to offer further services. If there can be a quiet cremation and we can go to a garden and see flowers and birds, I might do it, I thought, and we have agreed to do this – on Monday. The calls about this have been hard and happen sooner than maybe you are ready. Don’t feel you have to do anything.

I suppose what I want to say is, it’s OK to feel all these things, it’s ok to be angry, scared, to talk about it and to not talk about it. It’s natural that you will have a strange relationship with your body and your partner and your friends after this. It’s a natural thing because you’ve experienced something that makes all those things a little different. There is new ground to navigate emotionally and physically. And that’s just without all the hormones too. So please, don’t feel you need to be or do anything. You are brilliant just as you are. You have found strength in yourself you didn’t know you had, and you are worthy of love. You’ll always be a mum. Time, time is what we all need and a promise that you are never alone in this.

I am going to stop writing. I can’t tell who my audience is. Am I writing it for me or for another mother who is wondering what all this means and what will happen if they have to face it? Probably a bit of both.

I imagine things will continue to change for me on a daily basis. I am now, 4 weeks on today from that awful day at the scan, feeling calmer and finding it all a bit lighter. It is about time. I know Monday will be hard though, and I know this will be with me forever. That’s fine, it ought to be. I don’t know what the future holds for me, if I can face any of this again, but I won’t be replacing my small person. It has to be right. I am always their mum and I will be OK. You will too.

The truth is, this is only my story, but stories help us make sense of the world and so if mine can do any good, then so be it.

…………

I am happy to be contacted through the charity. This has been anonymised.