Before I start I just want to say: everyone is different. You might read this having gone through a similar experience and find that my reaction and coping mechanisms were completely different to yours. And that’s fine. You might think I’m incredibly cold or removed in the way I write about it, compared to your own experience, and that’s fine too. Or perhaps you dealt with it in the same way and are relieved to find your own feelings written by someone else. Maybe you don’t have first-hand experience at all, but you do have very strong opinions about terminations, regardless of the reason and the outcome, even if they are for medical purposes with no chance of a positive outcome. You might not agree with a single thing I’ve typed out below. Again, this is all completely fine. All I ask is that you don’t judge.
We’re all different, and we have our own unique ways of dealing with difficult things – loss, illness, stress, heartbreak – we do what we do to cope and we feel how we feel. No two experiences are the same, even if they appear to be on paper. I’m sharing my story, not for advice or opinions, not for people to tell me I’m right or wrong in decisions I made or emotions I felt, but just on the off-chance someone else might come across this who is feeling and experiencing the same.
Another run up to Christmas, another pregnancy. But this time we were sailing through. The 12 week scan had been fine, and a follow-up private Harmony Test had ended with the words “I have no concerns about this baby”.
Yet still, we wouldn’t relax. The problem with pregnancy after miscarriage is that it’s impossible to relax, because you know first-hand that things might not work out. But I tried. I wasn’t too anxious, I didn’t obsess about it but I wouldn’t make plans or connect with the idea either, and my husband was the same. We had the 20 week scan in our heads as the point we would relax. I have no idea why, seeing as things went wrong much earlier last time, so you’d think that a good 12 week scan would have been enough to reassure us. Looking back, I’m kind of glad it didn’t.
We told friends and relatives that only after the 20 week scan would we think about buying baby things and start planning. Until then, we were just going with the flow and trying not to worry too much. I’d tentatively bought some maternity wear because my jeans just wouldn’t do up, even with the hairband trick. Again, I’d been craving all the carbs and believe me, my waistline knew about it. Only the bare minimum though, a pair of jeans and a couple of tops to carry me through until we got past the scan.
The morning of our 20 week dawned, a Friday before a week jam-packed with social plans, including a trip to the Lake District. It was my late Grandad’s birthday, something I took as a sign of good luck, and although I was nervous (scanxiety is definitely a thing) I wasn’t actually too bad.
Initially the scan went well and everything looked fine. We marvelled at the screen and I had to jiggle myself about to try and get a clear view of certain organs. Then it came to the heart check and the sonographer went quiet for a little while, assuring us she just needed to concentrate. By this point, I wasn’t even worried any more.
It was then that she explained that something didn’t look right with the heart. She couldn’t be sure, it could be a bad angle or bad view, but she wasn’t confident in saying that everything was okay. We needed a second opinion: a scan with a cardio specialist. My own heart sank and I remember squeezing my husband’s hand and just thinking ‘not again’. But I tried to stay positive.
We were ushered into a quiet room with the screening midwife who talked us through what they’d found and what it might mean, and explained that we’d need a second opinion at one of several London hospitals. She warned us that there was often a bit of a wait – up to a week or so – and to prepare for that. I couldn’t imagine waiting at all to get an answer, the idea of not knowing for that long was unbearable.
There was a picture in the wall – a weird ‘modern fairy’ piece of art that I remember staring at for ages and wondering what had made them pick that particular piece for the ‘quiet room’. Was it supposed to be comforting? Or did it just match the colour scheme? Maybe it was supposed to be a distraction, because I definitely studied it for a long time, trying to work out its point or meaning instead of getting upset, until the midwife returned.
She told us that somehow, there was an appointment free that afternoon if we could get to London in time.
“This hardly ever happens,” She said, “Someone must be looking out for you.”
It was this that made me cry – I’m not a crier generally, but that’s what I’d been telling myself in the run up to the scan as it fell on my late Grandad’s birthday. Maybe he had been looking out for me after all, just not in the way I’d expected. I don’t think I’ve ever been as grateful to have a doctor’s appointment in my life.
We hurried to London, and I can’t even tell you how I was feeling at that point because I don’t remember. I don’t think we said much, other than to reiterate that things might be okay, so we shouldn’t panic just yet. There was an added stress at the hospital when we arrived and we couldn’t find where we needed to be, as we had been booked in so hurriedly we weren’t on the system.
When we finally made it to the cardio specialist, she was lovely and put us immediately at ease. But she was frank too. As very practical people, this was just what we needed – no sugar-coating it, just upfront honesty. She told us that in 50% of the cases when people are sent to her with this kind of thing, there was a problem. Obviously the severity of that problem would then have to be ascertained, as there were many different variations and conditions.
I didn’t look at the screen the whole time she scanned us – it took about thirty minutes and she gave us no sign either way while she was studying the scan and listening to the heartbeat. We were taken into a separate room where she explained that yes, there was a problem, several in fact. I’m not going to go into the details here – unfortunately there is still a lot of judgement around terminations, even if they are for medical reasons – and I’m going to keep certain aspects of our experience to ourselves. However, she did say that two of the issues could be fixed with surgery after birth. Unfortunately, the third, and the most severe of all the problems, could not. While inside, everything appeared to be working and functioning, albeit not in the right way, as soon as the baby was born, the heart would not be able to function. In short, there was nothing they could do.
I knew, as soon as she said this, that we’d both made our decision at that moment. We didn’t speak it out loud, but we know each other so well, that we didn’t need to. The more information she gave us about what would happen if we went on with the pregnancy, the more we realised what we had to do – both for us, and also for the baby. Continuing just wasn’t an option.
We still had to have other appointments first, as we wanted to be 100% sure. So we were booked in with a geneticist a few days later, as the cardio specialist explained that although she could identify the problems, she couldn’t establish the root cause. Suspecting it would be a genetic issue, we were advised to see another doctor who could help. One thing that was made very clear to us was that it was highly unusual to see this particular problem so early – it was usually diagnosed at 28 weeks or further along. For this, we felt extremely thankful – as bad as it was at 20 weeks, I knew it would feel even worse if we’d got even further along.
And so we left the hospital and called our families with the news. We were surprisingly okay at this point. I knew that at 20 weeks I didn’t have any other options apart from to be induced and go through labour, but I was trying not to think about it and instead focusing on the next step: the next appointment.
Our families were great, we could not have asked for a better response from them. The support from family and friends was incredible, and something that really helped us through. Bizarrely I remember walking past a pizza place and stating that I really fancied pizza. Again, just like the time before, everything was surreal. Even though I knew what had happened and what it meant, I don’t think it had truly sunk in.
We had so many plans that weekend and over the coming week, and didn’t really know what to do about them. Did we carry on as normal, as best we could? Or did we cancel everything? We decided to go ahead as planned – as we knew otherwise, we would just be sitting at home Googling things or worrying about what was to come. I’d made plans to go to the Lakes with a friend, and started packing. It was then that it really hit me – I think it was when I was folding up one of my maternity tops – and once I started, I couldn’t stop crying. Upset, fear, frustration, grief…you name it, I felt it. I veered from feeling lucky that it had been discovered early and we’d been fitted in so quickly, to anguish at the fact it was happening at all. Why us? But then a little voice in my head answered just as quickly ‘why not you?’. And weirdly, thinking like that did help. It wasn’t personal, it might not even been genetic, it was just a terrible thing that had befallen us, and had happened to many couples before us.
I’ve always been practical. As one of my friends once said ‘practical to a fault, sometimes’. But in this instance it really helped. I had a couple of days of feeling really sorry for myself, then I somehow managed to pick myself up again. I didn’t want to go down that path, I realised, if I could help it (I knew I might not have any say in the matter, and that I was going to feel how I was going to feel, but I could hope). I went to the Lakes. Amazingly, I managed to have a good time. That probably sounds harsh and quite cold, but as I’ve said so many times – everyone deals with things differently. I’ve come to learn that there is absolutely no right or wrong way to cope with something like this, you have to do what works for you. And if people judge you for it, that’s their problem not yours. You should never feel like you have to explain yourself.
We had our second appointment. The doctor was fantastic – so candid and informative, she was exactly what we needed. It confirmed everything we’d previously thought and reassured us about our decision. I knew that if there was any possibility of a positive outcome, it would change the way we had looked at things, but sadly there wasn’t. The doctor was kind, but she was firm: this pregnancy was not going to be successful. It wasn’t pleasant to hear, but it did make the decision easier for us, especially when she went into further details of what we might expect if we continued.
The screening midwife at our local hospital called as we were travelling back home; she’d been updated on the situation and was getting in touch to let me know that it was up to us now. They could book us in whenever we were ready, and would see us beforehand to talk us through what to expect. As much as I was dreading it – and still in a bit of denial about what was going to happen – I arranged for us to go in and chat to her the next day.
The appointment basically took us through what to expect during the up-coming induction. I’m not going to write about that in this section, as not everyone will want to read it, but I’ve outlined my experience here if you do want more details.