Surgical Termination for Medical Reasons at 18 Weeks
I’m a member of a club no one wants to be part of, when I joined I thought I was the only member, but through the brave words of other members I’ve learnt this is a big club, but one that most members keep quiet about.
To be a member you need to have made the heart breaking decision to end a pregnancy.
This is what happened to me in August 2017.
So why have I decided to tell people about my membership? When this happened to me, I felt like the only person this had ever happened to. It felt so unfair and lonely, I trawled the internet looking for others who had shared their experiences. At that moment I needed to know I wasn’t alone and although this was likely to be one of the most traumatic things ever to happen to me – I would get through it. But I couldn’t find anyone. I did find people who had bravely shared their stories of baby loss, either through miscarriage, still birth or neonatal death – and although many of these resonated with me and helped, there was an important difference between my story and theirs. A difference which meant that I didn’t know if I would be welcome in their club, the fact that I had decided to end my pregnancy.
Recently I have read a couple of amazing blogs by women who have also had to make this decision. I don’t feel I can write about my story as elegantly as they have but I’ve decided to have a go as my story takes a different path which others might find helpful to read about.
Throughout this blog, you’ll notice I use the word decision not choice. Choice to me is deliberating between a donut or an iced bun at the café or weighing up the choice between a city break in Paris or beach holiday in Croatia. Deciding, based on a horrendous diagnosis, whether to continue with a pregnancy and bring a baby into the world to suffer or to end your pregnancy is not a choice. It’s the shittest of shit decisions you’ll ever have to make.
So here we go……
In April 2017 we started our first round of IVF, after three years of trying and a year of fertility tests this felt like a really positive step. I was convinced it wouldn’t work – I’m a medical statistician so I’d researched the chances of success, but decided that giving IVF a go meant we could say we’d tried everything and could move on (I now see this was very naïve) – I think this was a type of self-preservation, if it failed that would be fine as I expected it to (idiot).
But it worked – I’m not sure how, I only had five decent eggs removed and only one fertilised. When the embryologist rang and told me this, I was devastated and it hit me how much I really wanted this to work. Of course I did – no one goes through the rollercoaster of IVF if they’re not bothered. And if one more person had said to me that day ‘it only takes one’ I would have punched them! But somehow it did only take one. I can still so vividly remember the day when we got the pregnancy test results. I was in tears in the waiting room – the anticipation was unbearable. When the nurse plonked down a pregnancy test in front of us and screamed ‘two blue lines’ in a very northern accent. I had no idea what she meant! It meant a life changing moment – it had worked. Bloody hell!!!!
My husband had to go to work and I can remember it hitting me as I drove home that now I had the same odds of something going wrong as everyone else (one in four). That seemed wrong – after having IVF you should be given a free pass to 12 weeks at least surely? So we anxiously got through each week. There’s this golden marker of 12 weeks, the time when you can tell people, the time when you can feel reassured. We did both (although quite a lot of people already knew as when I’m anxious about anything I cope by telling everyone about it!). All that changed at 16 weeks when we were told there were serious complications with our baby.
The days that followed this were the darkest of my life to date. I think both my husband and I had gut feelings about what we should do but neither of us wanted to make a quick decision. The care we received (actually care seems like completely the wrong word) during this time was appalling. This is probably a blog post in its own right – but I’ll give you the edited low-lights. We were given the diagnosis over the phone, we were told there was no one available for us to talk to about it and could we ring back when we’d decided what we wanted to do and they’d book us in (i.e. in her mind we would be ending the pregnancy). It was at this point, desperate for help, my husband came across the charity ARC (Antenatal Results and Choices) and rang them instantly. This was the best thing we could have done, Jane was brilliant, just feeling that what was happening to us mattered to someone was so important. If you are ever in this situation – ring them. We rang them a number of times through the weeks that followed. They don’t tell you what you should do, they support you with kindness and balanced information so you can make the decision that is right for you.
We decided we would end the pregnancy. Those seven words represent the worst of times – I’m not sure I have the words to describe them.
What I didn’t realise beforehand was that once you had made this horrendous decision, more shitty decisions follow. The next was how this would happen. We met with a midwife in what can only be described as an unwanted furniture store cupboard to discuss. After 12 weeks, the NHS has one option – to be induced, i.e. to give birth to your baby. The Owl and the Teapot has described in her blog this process (see http://owlandtheteapot.co.uk/category/babyloss). The midwife told us what this would entail and that afterwards we would be able to have photos, footprints and a funeral. The whole idea of this terrified me – not so much the process of being induced and giving birth but what would happen after that. Both me and my husband felt we couldn’t cope with meeting our baby and that we would rather stick with our happy pregnancy memories rather than replace these with what could be very distressing memories (I know everyone will feel differently about this, but this is how we felt). After our conversations with ARC we knew there was another option – surgical termination. We mentioned this to the midwife who told us that this would ruin my cervix and I wouldn’t be able to carry another baby afterwards. This was obviously devastating to hear. Another phone call to ARC informed us this wasn’t the case, and that although there are risks with any surgery, an induction was also not risk free (see https://www.bpas.org/get-involved/advocacy/briefings/fetal-anomaly/ for more information).
At this meeting we learnt we were expecting a girl.
We decided a surgical termination was the best option for us. The NHS doesn’t offer this but will pay for it. If we chose this option, this would be done at an abortion clinic. How could this be right? I’m very pro-choice and would never judge anyone for the decisions they make – but to ask someone who is ending their very much wanted pregnancy due to medical reasons to go to an abortion clinic just seemed beyond cruel. ARC have been working with the British Pregnancy Advisory Service (BPAS, an abortion provider) to develop a specific pathway for people in our situation (see https://www.bpas.org/more-services-information/fetal-anomaly-care/). You can read about the process on the BPAS website, here are things you might find useful to know if you decide to take this route. Apologies for the oversharing that’s about to happen, skip if squeamish.
- Expect to travel and/or wait. We live in Leicester, our nearest clinic is in Doncaster. They had a 6 week waiting list. We got a cancellation in Liverpool. Once you have made the decision to end your pregnancy, you need it to happen. The wait is beyond painful. I waited two weeks. In the end I’m glad the procedure happened away from my home, somewhere I’ll never have to walk past or see again. At this point in time – I’m not sure I’ll ever even be able to visit the city of Liverpool again. I’m sure this will change with time.
- Take something to do. I really didn’t know what to expect – they had said we’d be given a private room rather than being in with other people who were there to have an abortion for an unwanted pregnancy. I sort of thought this room would have a bed in it – like an NHS side room off a ward. It didn’t, it was a tiny windowless room with 3 very uncomfortable chairs and a TV. We were asked not to change the channel as they didn’t want Jeremy Kyle on! I’m really grateful we had a private space, on a trip to the loo I saw where everyone else was waiting and I was glad we weren’t in there. Apart from a few consultations and the procedures we spent nearly all day in that room. We did in the end change the channel – horse racing is really not my thing. You won’t feel like doing anything and probably won’t be able to settle on anything – but having stuff to divert your attention from what’s happening even for a minute or two is helpful.
- Everyone knew why we were there. Without me saying anything everyone knew why we were there. The staff couldn't have been nicer and all said the loveliest supportive things to us.
- It wasn’t just an operation. I thought I’d go in and have an operation. That did happen but other stuff happened too. I had a scan – they don’t show you the screen or have the audio playing, so you can’t hear the heartbeat. I asked to see the screen and was given a photo. I had a consultation and had to take loads of tablets – I think they were ibuprofen and antibiotics, whatever they were they were massive! I was 18 weeks by this point, given the size of our daughter I required a procedure before the operation. At mid-day (we arrived at 9) I was taken up to the theatre. I was given a gown and slippers – you can take your own nightie – but I didn’t want any reminders, and asked to put all my belonging in a suitcase. I was taken into theatre – awake, where a number of matchstick like things were inserted into my cervix. I was then taken on the bed to a recovery area where there were a number of other women. I think these matchsticks open your cervix. You have to wait 3 hours for them to take full effect. This was the worst part. I went back to our private waiting room. I was uncontrollably shaking, in pain and finding it hard to sit down. In the end we decided to leave the building and sit in the car, the car was warm and I laid down on the passenger seat and actually fell asleep. This was the best thing that could have happened. We went back in just before our three hours were up and then taken back up to surgery. This time I was put to sleep.
- I felt relived. I feel horrible saying this but when I woke up I was so glad it was over (well that part at least). There were tears throughout the day but manageable. I think on days like this something kicks in and you just have to get through it. I held it together until we got home when I completely lost it.
- They gave us condoms. Before leaving the clinic you have to have a meeting with a family planning nurse. She said she knew it was ridiculous as she knew why we were there but it was a policy that everyone was given a pack of condoms before they left. Odd.
- You’ll bleed - more than you ever thought you could. I was shocked by this, but when I mentioned it to the nurse she said it was completely normal. She told me how much blood would be abnormal – I can’t remember what she said now, but it was a hell of a lot! We drove straight home from Liverpool to Leicester in rush hour on a Friday night. It was the longest journey of my life and we had to keep stopping so I could visit nasty motorway services' toilets and literally mop up! So go prepared!
- The after effects. The next few days after the operation the feeling of relief came back, but was quickly replaced by deep sadness. Give yourself time. I continued bleeding for over a month. Also a few days after the operation my boobs swelled ridiculously and were rock hard and painful. They tell you not to touch them (I think this can stimulate milk) and they will go back to normal – I didn’t and they did.
- Desert Island Discs podcast. This isn’t really anything to do with surgical termination, but something that really helped me. I couldn’t listen to music – all music seemed to be about love lost – this generally didn’t end well. Reading took too much energy so someone recommended Desert Island Discs to me, these were perfect for giving my mind a break. Each episode features an interesting person who discusses their life intermingled with tracks that mean something to them. The key bit is the podcast, for rights reasons, only plays a snippet of each track! I could cope with a few seconds of even the saddest of songs! After the operation my thoughts were consumed by what had happened. I literally thought of nothing else – for months. These podcasts just allowed me to have a break and some time to think about nothing. They really helped me. Colouring in was pretty good for this too.
So that’s my story, I’m now 7-8 months on and it’s still hard a lot of the time, but not so acutely so. Time really is the best healer and it’s so true – I guess clichés come from somewhere. So far I haven’t read a blog from someone who has been through this journey and had a surgical termination. I wanted to share this as some people might not know this is an option (the NHS certainly won’t tell you about it) and I think information is power. This won’t be for everyone – for some people having that time with their baby is important and they wouldn’t choose an option which doesn’t allow for that. But for me it was the right decision and there must be other people like me out there. So that’s why I decided to put pen to paper, or in my case fingers to keys!
The trauma of ending a pregnancy for medical reasons doesn’t end after the pregnancy. The psychological effects are long lasting. Your baby will always be a part of you and they will shape your life forever. Even with the way our pregnancy ended I don’t regret having IVF and I cherish the happy pregnancy memories I have. I could and probably should write another blog about life after this type of loss – it’s a journey and a bumpy one at that but it does and will get easier.