Guest post: ‘It was a decision, not a choice’

After the Tommy’s Together For Change campaign launch last week, Laura from the blog Laura After Loss messaged me to ask if I would consider posting about an aspect of baby loss that you very rarely hear about, even in articles about pregnancy loss – termination for medical reasons. It is, as she put it, a ‘taboo within the taboo’.

And I agree. If we find it difficult to talk about miscarriage, stillbirth and other losses, we find it almost impossible to talk about termination due to serious foetal abnormalities – which may mean a baby won’t survive to full term, or if they do they will die shortly after birth.  Termination for medical reasons (TFMR) comes with an added complicating layer of politics, opinions on termination in general, religion, plain old, unabashed misogyny…you name it. But no one should lose their baby (because to me this is simple, it is a loss) and then have to fear that others will have no sympathy for what they’ve been through, condemning them for their ‘choice’.

So I want to make this absolutely clear – if you’ve sadly had to make this decision, and have somehow stumbled across my blog, you are absolutely welcome here. This blog is for you too.  Our grief is a shared grief. Now over to Laura…

I’m a member of a club no one wants to be part of. To be a member you need to have made the heart-breaking decision to end a much-wanted pregnancy.

This is what happened to me in August 2017. And when it did, I felt like the only person this had ever happened to. I thought I was the only member, but I’ve since learnt this is a big club – only it is one that most members keep quiet about

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 that – 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, stillbirth 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.

Throughout this post, you’ll notice I use the word ‘decision’ not choice. Choice to me is deliberating between a doughnut 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.

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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. Although 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. When the nurse plonked down a pregnancy test in front of us and said ‘two blue lines’. I had no idea what she meant! It meant a life-changing moment – it had worked.

Bloody hell.

Somehow we anxiously got through those first weeks, and finally we got to that golden marker – 12 weeks. We started telling people. We relaxed a little.

Then at 16 weeks 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.

We were given the diagnosis over the phone and then 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.

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, if you are ever in this situation – ring them). We actually rang a number of times in 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.

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 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. We 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 others 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 in fact wasn’t the case, and that although there are risks with any surgery, an induction was also not risk free (there’s some useful information here on this here) .

Somewhere along the way, we learnt we were expecting a girl – our daughter.

We decided a surgical termination was the best option for us. The NHS, it turns out, doesn’t offer this but will pay for it – but it has to be at an abortion clinic. This felt beyond cruel.

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 can’t be right.

Not only that, but we had to wait. Once you have made the decision to end your pregnancy, you need it to happen. The wait is beyond painful. However, we live in Leicester, our nearest clinic is in Doncaster and they had a six-week waiting list. Eventually, we got a cancellation in Liverpool (I’m not sure I’ll ever be able to visit the city again…) two weeks after we’d made the decision.

Once we got there, the staff at the clinic couldn’t haven’t been nicer. Without me saying anything everyone knew why we were there and all said the loveliest, supportive things to us.

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. I was 18 weeks by this point, and given the size of our daughter I required another procedure before they could operate – to open the cervix.

At midday (we arrived at 9) I was given a gown and slippers and taken up to theatre awake, where a number of matchstick-like things were inserted into my cervix. I was then taken to a recovery area. You have to wait three hours for them to take full effect.

This was the worst part. We had a private room to wait in, but I was uncontrollably shaking, in pain and finding it hard to sit down. In the end left the building and sat in the car, which was warm and I laid down on the passenger seat and managed to fall asleep. Which was probably the best thing I could have done. 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.

Afterwards, I felt relieved. I feel horrible saying this, but when I woke up I was so glad it was over – the physical part at least. 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, crying.

So that’s my story. It’s nearly a year on now, and it’s still hard a lot of the time – but not so acutely. Time really is the best healer – 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. It won’t be for everyone – for some people having that time with their baby is important. But for me it was the right decision and there must be other people like me out there.

The trauma of ending a pregnancy for medical reasons doesn’t end with the procedure. The psychological effects are long lasting. There’s a lot of guilt and stigma that goes along with this. 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 will cherish the happy pregnancy memories I have.

A massive thank you to Laura for allowing me to share this incredibly honest account. She has some other useful information about what to expect from this procedure, over on her blog, which you can read here. There is also some information about TFMR on the Tommy’s page here, which they shared this week after some feedback on the Together For Change campaign. 

 

2 Comments

  1. Thank you for sharing this Laura and I’m so sorry for your loss. I’m appalled at he midwife who told you that particular termination method would stop you from carrying another baby… I’m used to that sort of scare mongery misinformation among medical staff here in the states, but am sorry to hear it is across the pond too!

    Thinking of you ♡

    Liked by 1 person

  2. Thanks for sharing your story, this must have been really hard to write. But I absolutely agree that the more information and stories we can share, especially ones that so often sadly go untold, the better prepared we can all be. So thank you for your bravery. I am sorry you had to go through such a traumatic and lonely experience.

    Liked by 1 person

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