I don't know how my story will end

I am writing this before I know how this part of our story ends.

Heartbreaking stories. Devastating stories. The miscarriage story needs to change. That's why we've created Tommy's book of #misCOURAGE. Read this story now and help spread the word that miscarriage can no longer be ignored. Help us change the story to save babies' lives.

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May 2016

I suppose it begins with our marriage in early 2012 (oh, so traditional). As a bride I already knew that it might be difficult to have children. When my periods started they were irregular, but everyone is taught they start that way and then even up. Mine never did, my cycles lasting anywhere between 32 and 90 days. Incredibly annoying and inconvenient, but something I lived with. 

Well meaning friends told me that there wouldn’t be any problems whatsoever and that ‘everyone thought there would be difficulties when usually there weren’t’. Friends are there to reassure, but often they tell you things they think will help that actually don’t. This, it turns out, is a common thread throughout each personal journey of infertility and miscarriage. Still, we hoped that for me PCOS would be an inconvenience we could circumnavigate rather than an end to our family plans.

And so we tried to get pregnant. We didn’t.

After a few months I decided to start charting. Long cycles make it difficult to tell when you’re ovulating (or if you’re ovulating) without doing some data recording. It was something of a science project, learning all this stuff about temperatures and consistencies and fluids… You’re taught at school that just touching a boy could get you pregnant. Learning about what really happens during a cycle would have been much more useful.The charts showed I ovulated. Usually very late by ‘normal’ standards, but we redoubled our efforts to catch that egg. 

A couple of months later I went to the doctor, explained my symptoms (including what I’ve always considered a slightly gross snail trail from my belly button) and like me, she suspected PCOS, even though I was ‘too thin’. That’s when my tests began, starting with bloods and an ultrasound, which confirmed the diagnosis. As soon as it was on paper, there went my chance of ever having life insurance that covered diabetes – something of an unexpected consequence. But in January 2013 we got pregnant. By ourselves. Hurrah!

By then we (I!) were deep into charts and ovulation sticks and all the other baby making paraphernalia. I was exhausted and mostly remember struggling through work only to collapse on the sofa at the end of the day. From there I went to bed, and then it was time for work again.

All was ok until six weeks when I had the tiniest amount of spotting. The internet can be a nightmare through infertility. You know that could be bad. So we called the doctor and they arranged for us to visit the EPAU for an early scan.

The EPAU is never going to be a happy place. I have now been many times, in every pregnancy, and it’s always filled with sad people. Often sobbing people. People in limbo, trying to prepare for the worst.

For us, the first visit showed all was ok. My first fanny cam encounter was as near as you can get to positive. We were asked to return two weeks later for a follow up, just to be safe. 

Waiting for scans has become part of my life for five years, and that first fortnight’s wait passed slowly. Finally, eight weeks rolled around and we were back at the EPAU. All was fine, the heart was beating and we were ‘discharged to normal care’.

What a relief. We had faced the first horrors but come away still pregnant. Four weeks more for our 12 week dating scan seemed doable, and for the only time, going into hospital for that scan was exciting – the real ultrasound department, not the EPAU.

We were led down the corridor while I clutched my notes. I laid on the bed and the machine was already on, waiting to show us our cartwheeling, waving baby. But then the sonographer got an image on the screen. I will never forget that moment. There was my womb. And there, at the bottom, was a grey mass. No moving arms and legs. No reassuring flutter of a heartbeat. I knew it was oh so wrong.

The sonographer said barely anything except she was going to get a colleague. The pair of them returned almost immediately and the second lady nodded and turned to the first lady and said something like ‘I’m afraid so’. Finally, we were told that the baby had died but my body hadn’t realized. What they call a missed miscarriage. We would be taken to the ward to find out our options. 

I don’t remember much about how I felt then. In shock I suppose. I asked to go to the loo – remember, they tell you to attend scans with a full bladder – which seems so odd now. Then my husband and I were hustled out of a back entrance to spare us going past all the happy pregnant ladies, and walked the long road to the ward.

And then we waited. There is always waiting. By then I was crying, my husband was my rock, as he has been the whole way through. A junior doctor made a mess of taking blood and eventually took it from the back of my hand, but I barely noticed. We were given a badly photocopied piece of paper with our options. Essentially, we had three. A) Wait longer for everything to disperse naturally – but no one had any idea how long that would take. B) Return to the hospital for a ‘medically managed miscarriage’. C) Opt for a D&C.

Except there was only one option that we were really pushed towards. The middle one. The first would potentially be far more drawn out and end with B) or C) anyway. The last would mean waiting a long time for a booking and it was obvious the hospital didn’t want women to go that route. 

And so we returned first thing the next morning to be admitted to the ward. I had had a bad night’s sleep and a bacon sandwich since going home the afternoon before, several hours after arriving for our scan. 

The only information we had had prior to the procedure was quite benign. I would have various pills and pessaries ‘up there’ and everything would come out. 

There followed one of the worst days of my life. I had not been expecting the excruciating pain that was to come. That the first pessaries wouldn’t do their job and would have to be repeated. That at one point the adjoining bathroom would have no less than six bedpans and sickbowls containing every bodily ejection you can think of, because the staff were busy with so many other patients. That I would repeatedly be put in stirrups while nurses checked on progress with an enormous light and lots of metal instruments. That I would have to be shouted at to push. 

In theory, each time you felt the urge to let something out, you put a bedpan in the loo, pushed/let it gush through, and then rang for a nurse to take it away to be checked. I have no idea how many bedpans there were. There were a lot.

The day passed in a blur of blood, vomit and a hospital lunch that came back up shortly after. My poor husband was with me the whole time. I remember thinking how much worse it must be for him, watching and being fairly powerless to help. But without him there I don’t know what I would have done. At one point I remember completely losing control. No one had really told me what to expect, or thought to explain how the process worked. I think it was that, coupled with the pain, that meant I couldn’t compute and started pretty much screaming. They told me to be quiet, but it was my husband’s face, my husband holding my hand, that was perhaps the only thing to get me through.

As night fell, it was confirmed I had passed the ‘products of conception’. The ‘products of conception’. You mean my baby, I thought. I fell into an uneasy sleep and we were finally allowed to go home at about 2am. The new sister on the ward put her hand on my shoulder, gave me another poorly photocopied leaflet and said ‘you’re young, you can try again’. 

We went home, shattered physically and emotionally. Only our parents and a few close friends had an inkling of what we were going through, but no one we knew – at least that we knew then – had a clue what it was like to go through this.

I woke up in a pool of blood. I was so embarrassed. No one tells you how much blood there could be. Our way of coping was to go away from everything. My husband’s grandmother had died a few days before, only hours after finding out she was going to be a great grandmother. We had to be back for her funeral. Still, we squeezed in a couple of nights in a lodge in beautiful Shropshire. Something about the hills and the fresh air helped me to begin to heal, although slowly at first. We returned for the funeral and I sobbed as if it was my baby’s service. No one really knew what had happened to us, but we could be seen to be sad in public.

The days passed. The hospital had signed me off work for a week but I couldn’t get my head around what had happened and had to go back to my GP for longer. She was wonderful and signed me off for a further week. 

After that I threw myself back into work. It has been my lifeline in a way. When I wasn’t at my full time job I was studying for a masters as well. When I wasn’t doing coursework I was writing a book, or blogging, or learning about something else. It helped me cope as we had further tests (I didn’t stop bleeding for ages) and when we received a letter to say testing was inconclusive as to why our baby died. 

Life returned to a new normal. After a couple of months we realized the alternative to trying again was giving up. So we tried again. My GP helpfully put me on Metformin, which has been shown to help some ladies with PCOS. We tried, and yet again, we waited. 

The Metformin almost seemed to be a switch. I got pregnant again at the very end of October. By then we were living in a holiday cottage between house moves. I was in a different job, we had begun to move on from the horrors of the first loss. I was still charting and I knew straight away I was pregnant when things began to taste funny. I hid the stick in a cupboard and went to look at it again half an hour later. Two lines.

We duly attended our eight-week booking-in appointment with the midwife, just as we had the first time. There were more tears. There were assurances that missed miscarriages were unusual, especially from 12 weeks onwards. It felt like we were covering the same ground. There was little joy or excitement. We had been robbed of that. It was now just fear, with enough hope to get us through.

All seemed to be going ok. I was tired again, but I worried at the lack of morning sickness (which I didn’t get the first time either). I finally broke the news to my colleague on New Year’s Eve – we would be 12 weeks on New Year’s Day. 

Just before leaving work that night I went to the loo. There was red blood. I went into a sort of trance, knowing that I had to get home. Right. Now. There was no panic. Instead there were good byes and ‘Happy New Years’ to colleagues I saw on the way out. I drove home in a weird sort of acceptance that it was over….again. I asked my husband to sit down and told him I was bleeding. We agreed to have no alcohol that right, rang the GP for advice (she laughed, nervous I hope, but I’ll never forget) and called our friends to tell them we weren’t coming to the party. 

I bled slowly at first. A couple of hours in, things started getting worse. Every few minutes I would feel an urge and seemingly impossible amounts of clots and blood would gush out as soon as I’d got to the toilet. Where was it all coming from? The pain was building and the bleeding getting worse until 2am when I couldn’t take it any more. We had to go to hospital. 

This time we had to go in via A&E. The nurse apologized but they needed to prove I was pregnant. Would I try and pee in a bedpan? There was blood everywhere. Some ridiculous failed experiment, but she was sure that somewhere in there there was enough HCG to prove I was with child. They gave me enormous pants and sent me back to the same ward where I’d had the ‘managed’ miscarriage. 

There were several emergencies, no beds, a lot of pressure. It was New Year’s Eve and having survived an A&E full of revelers, I was now in the day room. Waiting. 

We were to wait all night while I bled away my baby in that waiting room. Obviously, as soon as we got to the ward the bleeding had slowed to almost nothing. It was a long uncomfortable night and in the end we had a scan at about 6am. There was nothing there. The miscarriage had been natural and ‘successful’. 

At some point they had taken bloods and the HCG reading was lower than it should have been for my gestation. The doctor was fairly blunt about how I probably wasn’t as far along as I thought. I’m not stupid. We know when we had a positive test. That we kept having positive tests. That we’d done the booking in at eight weeks and had a dating scan due in four days. I was made to feel like an idiot that had got her dates wrong. Our dates were not wrong. The explanation was that we had again had a missed miscarriage. But because it was ‘only’ our second loss we had better just go home and start again.

This time I only took one day off in addition to the bank holiday. My coping mechanism of working through it came back. It kept me going even when my HCG stubbornly refused to fall to non-pregnant levels.

Time passed. This time, nothing happened. Nothing continued to happen. Friends were announcing and popping out babies every five minutes. I had another new job and even the people I managed were having babies. A close friend had a baby only days before my second loss. I really struggled with that. I am sorry for it, but I still find it hard to deal with. My second baby should be only a little younger.

The odd thing about the NHS is the silos. We didn’t qualify for tests for recurrent miscarriage, but we were suddenly qualifying for tests about infertility as it had been so long since a positive test. I found myself going to random practices and clinics all over the county for scans, and yet more blood tests.

With the support of my parents we visited a private consultant. It was the best £250 we could have spent. The consultation wasn’t long, but it was long enough to feel we were being listened to, to ask questions. I love the NHS and without them we would have had no help whatsoever, but with the funding available they are unable to provide the same help in the same way as seeing the same consultant in a private setting. He told us to start taking aspirin should we be able to get pregnant again, but avoid too many more tests until we had a third loss. 

We tried Clomid. I ovulated faster, but after six rounds we still weren’t pregnant. It was suspected my eggs weren’t of good quality. To my enormous surprise, when that didn’t work we were referred for IVF. If you’d have asked me three years before would I have done that, I don’t think my answer would have been an immediate ‘yes’. Somehow we were caught on a treadmill and that was the next step. Not IUI or anything slightly less invasive.

We found ourselves at the clinic a few months later at a PowerPoint presentation for the infertile. Despite popular media, they are not career women that didn’t have children when they should have done. They were people like us, late 20s, early 30s. Normal. The process is quite an interesting one it turns out (I started out with a science degree) but my husband was somewhat more squeamish. The next chapter was laid out ahead. 

Then we were told we might not qualify and the clinic needed to double check. More waiting. 

Our first fresh round began in early 2015. With PCOS I was at high risk of OHSS (ovarian hyper stimulation syndrome) and sadly it had to be cancelled before transferring an embryo. People have since said ‘how wonderful to get 30 eggs on the first try!’ but it’s not wonderful; it’s dangerous. I was actually in hospital a week with severe swelling and fluid on my lungs after developing about 60 follicles on each side.
They tried to freeze the best eggs but only one thawed. Our follow-up FET (frozen embryo transfer) didn’t stick.
We were worried about trying again, but the doctors had a different protocol we could try so in November we gave it another go. It worked in that they only retrieved 15 eggs this time. I stayed well. We transferred two embies. The whole time I had a great feeling.

Three days later I had a strong positive test. ‘It must be twins’ I thought! Unfortunately that’s when the symptoms started coming on. The thing with OHSS is that it can strike once you get pregnant too, and because of the hormonal changes, it can carry on getting worse, taking longer to clear up. I was admitted to hospital again and this time was there another week. A scan at four weeks showed two winking dots on the screen. The sonographer wouldn’t commit, but I was convinced it was twins.

Just over a week later we knew it was twins, the sacs were larger, there were definitely two. Having thought that it was a routine appointment at the EPAU, the scan showed my ovaries were still frighteningly large – 15cm on one side, and to my immense disappointment (and, I’ll admit, tearful rage – I begged not to be admitted) I had to go back into hospital overnight for more tests. I felt like I was wasting their time. 

Thankfully I was out the next morning, this time with a sick note for two weeks. The on call doctor at my previous discharge had been very rude about me and my condition, thinking I was out of earshot. The truth is, on a ward you hear everything. 

The pregnancy was day after day of worry. Having been through so much you don’t even consider that this time it could work. I had got a bit more open about our journey, but a lot of people weren’t comfortable talking about it. They try to reassure you, often by once again saying unhelpful things – ‘at least you got pregnant’, ‘it was a trial run’ etc etc

I went back to work a week later, not yet my normal size, but well enough to work. This was in defiance of my hospital sick note, instead using one from my GP with a shorter date on it. Again I needed another focus to stop me mulling everything over all day.

We had six and seven week scans. All OK. Then we found our dating scan wouldn’t be until 14 weeks. I couldn’t wait that long. We booked a private scan at around 11 weeks.

It was 21 December and we were the last patients of the day, but it was more comfortable because it wasn’t the EPAU. The sonographer was familiar, and lovely. There were two heartbeats. Disbelief and relief turned immediately to tears. But there was a but. One of the twins looked to have a condition called anencephaly. It was ‘incompatible with life’. Immediately my tears of joy became tears of confusion and horror. To have come this far only to be knocked back again.

We were once again referred to hospital to see a consultant. It was 23 December now and he unfortunately confirmed the diagnosis. It was time for options again. We had two. A) Try and carry both babies as long as possible. Clinically speaking, they would be extremely likely to be dangerously premature. The sick baby would either die during birth or very shortly thereafter. While in the womb, the sick baby may need fluid to be drained. Every time a needle went in, the healthy baby would also be at risk. B) Accept that nature has already made its decision. Elect for a ‘selective reduction’ which means an injection to stop the sick baby’s heart. This included a 5% risk of miscarrying both babies.

I had already read up on all of this. It made our brains hurt. I was so sad and angry that we were in this position. There will be people that judge us poorly for the decision we made, but we felt that mother nature had already answered the question, just stopping short at finalizing on it. We decided on the reduction to give the healthy baby the best possible chance. I have questioned this a lot. Should we have tried to have them both? Could we have coped with losing one baby at birth and arranging a funeral at the same time as having a new baby? Would the other baby have made it? The truth is, we will never know, but we have to live with the decision we took.

The next day was Christmas Eve. At 8.30am the consultant put a needle, guided by ultrasound, into my womb. I knew I had to keep still. Make the procedure as quick and simple as possible to give the other baby the best chance. As soon as the needle was out I let out a cry. I felt the enormity of what we had been through in 72 hours. It felt as if there should be a lot more blood and agony. But the truth is it was the quietest and least physically painful loss of the three so far. In an odd way that made it harder to deal with, because the physical pain wasn’t there to match the emotional pain. This time I couldn’t shake that we had done it on purpose. We wanted a baby so much, but as far as the literature was concerned we had aborted one. 

That was more than five months ago. I write this at 34 weeks pregnant with the surviving twin. Not a day goes by when I don’t think about his or her twin. I am still carrying him or her. He or she was lost at twelve weeks and therefore the fetus was very small, and will have got still smaller since, but is there nevertheless. 

I have no idea how this pregnancy will end. We are in unchartered territory. Scan after scan comes and goes, we worry and then we go home. We refused to get anything ready at all until well after 20 weeks. Now we’ve let the flood gates open, but so much could still go wrong. People are so excited for me. They ask if it’s my first baby and I smile and say ‘yes’. Pregnant women are public property to be celebrated it seems but my outward appearance doesn’t tell the full story.

The silver lining to my journey is that I’ve been able to help a wonderful friend of mine when she went through her first miscarriage. Bravely, she wrote her story, and in so doing inspired me to finally write my own. It helps. 

I hope one day that we get much better at dealing with miscarriage and pregnancy loss. That the idea that it’s weak to grieve about a baby lost before birth is consigned to history. Most of all, I hope that we find the courage to talk about it. It’s incredible how many women have been through loss, but you don’t know who until you are brave enough to say that it happened to you.

One day, I intend to run a marathon for Tommy’s. I hope, by then, my current story will have a happy ending. For now, I can only continue to hope, and take each day as it comes. 

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Disclaimer

Please note that the opinions expressed by users in Tommy’s Book of #misCOURAGE are solely those of the user, who is unlikely to have had medical training. These opinions do not represent the opinions of Tommy’s and are not advice from Tommy's. Reading individual, real-life experiences can be a helpful resource, but it is never a substitute for professional medical advice, diagnosis or treatment from a qualified health care provider. We strongly advise readers not to take drugs that are not prescribed by your qualified healthcare provider. If you think you may have a medical emergency, call your doctor, midwife or hospital immediately. Read full disclaimer

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