I did ask a few questions of what was going to happen. I was already 18 weeks, I just, almost 18 weeks at that point, so I wouldn’t have had the option of a surgical termination.

In any case, I knew that I wanted to have a normal labour ‘normal’, so to speak. So basically they told me, ‘Okay, you can’t have a surgical termination. This is, you know, you’re going to basically have to go through labour. The first two pills were going to give you today are just going to prepare your uterus. And then when you come into hospital in two days’ time, were going to give you some more and some pessaries and stuff to start the labour. And then at that point it shouldn’t really take an awful long time. I mean it will take a few hours, you can have all the painkillers you want, you’re going to be in a private room, and you’re going to give birth, and that’s that.

And then at the time you’re so shocked that you don’t ask any practical questions. I did find that I didn’t ask, ‘And what do we do with the baby after that?’ You know, I just didn’t even think about it. So we, in terms of practicalities I wasn’t really sure what was going to happen.

And then we realised when we got home that we had all these questions that we hadn’t asked. And, but because theres someone in our family that had a stillbirth before, they were our first port of call. So we called them straight away and said, ‘Well, you know, what do you do? Do you bury, do you have to bury the baby? You can cremate the baby? Do they keep him at the hospital? What, you know, what do you do?’

Because you just don’t hear about, I think you hear about it more and more but I’d never actually heard of ‘termination for fetal abnormality. I didn’t know whether you could do it, I didn’t know whether you, what the time limits were or, or anything like that. And I think things that we were frightened about you can’t even articulate. I mean to me the horror was that the baby would be born alive – and nobody actually explained at what point, you know, the baby, you know, the ba-, would die, or is there any way of making sure that the baby had died before, you know, the termination started. I don’t know, and in some ways it’s so horrible you can’t, you, you can’t even ask the questions. I don’t know how theres any ways of addressing that.

A number of people have said to me, ‘Did you really have to go through a normal delivery?’ Well, nobody’s actually said why we didn’t, but I mean clearly, you know, surgery for a C-section is, is pretty major, especially when you’ve had it since and really appreciate that. But I think that could have been made clearer.

The next shock that was to come, was that I’d got to inform my midwife. So I phoned my midwife and this was the bit I hadn’t researched, and she said, ‘Right, okay, I’ll ring the labour ward and book you in. I said, ‘At labour ward?’ She said, ‘For the procedure,’ I said, ‘Why do I need to go to the labour ward? Won’t I go to the general’?’ ‘No,’ she said, ‘You do know what will happen, don’t you?’ And I said, ‘Yes, I’ll have a general anaesthetic and it will all be done and ‘ ‘No,’ she said, ‘You’ll have to go through the labour,’ which I hadn’t comprehended, that hadn’t sunk in, although I knew it, I did know this but it hadn’t, I hadn’t realised it.

So that threw me, I said, ‘Right, I’m not doing it. I said, ‘I’m not doing it, I’ve changed my mind. My husband said, ‘Now, don’t be silly but, you know, weve made the decision and weve got to, you know, if that’s the way it has to happen, that’s the way it has to happen. And I, I, it just completely threw me, it really did throw me completely. I genuinely did think, at that point that I would go in, have a general anaesthetic, it would be like having a D & C, that kind of termination. It hadn’t registered that because I was so far gone, I would have to go through a full labour.

I didn’t really know what Edwards’ Syndrome was, was just beginning to get some information together. Most people I, hardly anybody I spoke to, knew anything about it at all – family or friends – and to actually have somebody on the phone who said, ‘Ah, yes’, you know, ‘I know what you mean’, and knew kind of what we were going through really, was, was, just listened, was really, it was really, really helpful.

And also sent, you know, they had lots of booklets that said, ‘Oh, weve got a booklet on this’, which you know there was a booklet they had about, you know, one about telling children, or telling your kind of grandparents, or what they could, you know for grandparents, I think it was. Another one which on the helpline, the lady at ARC said, ‘Well, we can send you this, we know you may not want it yet, but it’s about kind of a termination, about the kind of decision-making process and, you know, we could send that to you now, or we can send it to you later. What do you want?’ And I said, ‘No, send it to me now. I thought, ‘I’d rather start reading,’ and that was good.

And then the, two days later, the booklet arrived from ARC in the post, that’s about termination, and I think I wasn’t even dressed, my husband was going to take the other one to school, my oldest daughter to school, and I wasn’t dressed, and I opened this booklet, I was eating my breakfast, and once I started reading it, I couldn’t stop reading it.

And one of the first things I read really shocked me, which because at this stage, I would have been 13 weeks, and I read that from 13 weeks on, if you have a termination, you have to give birth, and I’d had no idea that was the case. And I just couldn’t believe it you know, I virtually broke down I think I read that when my husband was taking our daughter to school, and by the time he came home, I was in a right state, you know. I just had no idea. I don’t think I’d really thought that much about, I’d sort of realised the word ‘termination’ was potentially on the horizon, I’d assumed it would be some sort of surgical procedure. I hadn’t any idea it meant giving birth.

Probably if I hadn’t, I mean if I hadn’t known about ARC (Antenatal Results and Choices), or SATFA as it then was, nobody gave me the information at all. I literally… I think I went on the internet, and I found their number. And it’s very sad that that’s still happening. Because I know where I work I’ve had an incident recently with a, with a mum who sadly went onto have a termination and had nothing. And it was only when I happened to pick her up during a routine GP session really and found that she hadn’t been given anything either, and I was able to give her the information. But if I hadn’t had that where would she have gone for it? Which I think was very sad that even now, 9 years on were talking about, so a good long way, people still aren’t getting the information, which I think is very, very sad.

And at this point, when we got the results we also had an appointment to go back to our first hospital to discuss with the obstetrician what we wanted to do. So we went to see him;

Unfortunately, I don’t know whether he hadn’t read our notes before he came in or what, but he was probably the most unhelpful professional that we met. He seemed very, he was like, ‘Right, you’ve made the decision to terminate so let’s just get on with it,’ and, you know, ‘Go home and forget about it.

And in fact, we were wanting sort of more information from him and he said, you know, explained about taking the tablets 48 hours before you want to go in, and so he was saying, ‘So, if you want to take them now and come in, in 48 hours,’ and I was saying, ‘No, you know, I need some time to think about this’, and I was thinking more like, well be coming in, in 2 weeks’ time;

He seemed, he explained to us that for some terminations you can have under scan, under ultrasound you can inject the baby’s heart with potassium, if you like, to do the termination, and then you give birth afterwards, which for me was horrific and was just not an option;

I just can’t imagine, you know, it was really, one for me, I didn’t want to give birth to a baby that was already dead, to me that was even worse than the situation we were in. And to watch it on screen that happening to me just sounded absolutely horrendous, just cruel;

So when I said to him that I didn’t want that, he seemed, he was almost like quite surprised because I was telling him what I wanted, rather than him telling me what was going to happen and me saying, ‘Okay.

So I said to him I didn’t want that. I said that I wanted to give, just to give birth and, you know. And the fact that I said to him that I wanted a couple of weeks to think about it. As well as the practicalities of sorting out baby-sitters. [husband’s] parents were away on holiday so we had to wait for them to come home and things like that. And when I said to him, ‘I want to wait a couple of weeks,’ his, his comment was, ‘But you do realise your baby might be alive when they’re born?;

Which was like, ‘Yes. And that seemed to be a problem, ‘Well, that means you’ll have to get a birth certificate,’ and he didn’t for one minute seem to think that I wanted, I wanted a birth certificate. I wanted my baby to be alive when they were born because I wanted them to die with me, and he didn’t seem to have thought about that;

And, you know, I can understand that unless you’ve been in that situation you wouldn’t think about things like that, but it seemed like he had a very narrow view of what happens. It’s like, you’ve decided to terminate this pregnancy so ‘let’s just get on and do it and not think about it, go home and get pregnant again’ sort of attitude;

And he didn’t seem to grasp the fact that this was my baby, and I want this baby but I’d found myself in these circumstances, I want this baby to born alive. I want her to have the respect of a, you know, rather than something that’s going to be pushed away and forgotten about;;

The specialist in [city] confirmed the major heart defects and then we were sat in a room with, she was sort of a counsellor midwife, and she handed us the book then and just talked through a few things.

And we came home on the train reading the booklet. I’ve still got the booklet, I’ve still got the booklet, last night I got that. And that was, I can’t, it was a bible. I mean there were things in there which I didn’t even realise. It was silly little things, about, almost about giving birth to be honest. I mean you said about termination, you don’t actually… because it had never occurred to me before, I’d never even had to think about it, you suddenly thought, ‘I’ll have to physically give birth. And that’s explained.

And then, you know, will you give birth to a live baby? Or whether you’ve had a baby before, where will you give birth? They, they put all the questions that you should ask, and I actually, I sat down that evening, I think, I’m not sure if I had a question, a checklist of all the questions you should ask, and I wrote them all down on a piece of paper.

And the specialist at our local hospital found this, and she said, ‘Oh, I’ve just been reading through this,’ and we went through them together. And it was just like the, one of the questions was where you gave birth and, because it said some places, hospitals you give birth in the labour ward, which to me seemed dreadful, you know, and I put, ‘No. And, but she explained that they had nowhere else, and you’re in a private room. So that was fine, you know, that was okay then.

Well, I was, I mean, that’s actually something that’s worth mentioning, that despite the fact wed gone to a clinic and a hospital who are at the kind of forefront of kind of antenatal stuff and problems, no-one actually told us about ARC. Which ARC were surprised about and actually, didn’t actually give, I don’t think we really came away with any information, apart from what you’ve been told verbally.

We didn’t have any leaflets or anything, and it was actually just chance that on the Saturday morning, through… I spoke to another mum from the school where my eldest daughter went to school, about something, and shed known I was pregnant, and I just mentioned, I said to her, ‘Oh, you know just having the most awful time,’ and briefly told her what had happened, and she said to me, ‘Oh, I’m really sorry. Then she said, ‘Actually, I had a baby who had Down’s and I had a termination before.

Yes, shes had this experience before her daughter, who’s the same age as my elder daughter, and she said – I hadn’t known that shed this experience – but she then said, ‘Oh’, she said, she said, ‘Oh, it was just awful. I know you know, really, really sorry, because I know how terrible it is. Theres a really good organisation called ARC,’ she said, ‘I’ve actually got some newsletters, I’ll get them to you.

So that’s how I found out about ARC, and I think, it was a bank holiday weekend, so, the Tuesday I think, I was on the phone to them, as soon as their, kind of their helpline was open again, and they were fantastic. Just to find some, somewhere a source of information, somebody who knew what you were talking about when you said Edwards’ Syndrome, who knew what you were talking about when you said, when you sort of explained about the tests, or talked about what was happening at the hospital, would say, ‘Oh well yeah, you know, this should happen next, or…, was just fantastic, it really was.

Yeah, I never thought about just letting nature take its course. I don’t know, for 2 reasons, really I suppose I didn’t want the baby to suffer any more than it had to and theres all sorts of research now on when babies feel pain. At that time it wasn’t thought to be before 20 weeks or 22 weeks or something, and I didn’t want the baby being born, maybe at 34 weeks and struggling for life for a couple of hours or days or something in the special care unit and they weren’t going to live. To me that’s putting the baby through more pain than was necessary;