I came back probably about 17 weeks pregnant and had the anomaly scan at 20 weeks and like most people expected everything to be fine and to come away with a lovely picture but unfortunately that isn’t what happened.

What happened then?

We went, I went in to the scanning room and they’re quite bland facially anyway, whether everything’s fine or not they just look at the screen to start off with and do measurements but I very quickly realised that the woman’s demeanour wasn’t, even for a bland face, was concerning.

And before they gave me any of the results she asked a colleague to come and told me she wanted to check something, with a colleague, and by then I was getting very concerned because I’d never had that happen before. And they actually asked my husband to come in before they spoke to me.

And the first few things they said it didn’t sound as thing, as though things were terribly wrong. It was just a few little things like the kidneys were hard to find, and the stomach was hard to find, but that might be because it wasn’t filled with fluid. It was probably all right but hadn’t had any fluid in it at the moment.

And they took us out of the scanning room, into a more quiet room while they typed up the report. And even at that early stage it was beginning to sink in that there was something really not right.

And as, and as soon as I saw the pictures of the scan, having had two normal pregnancies, even I could see that there was a marked contrast between this pregnancy and the pictures that I’d had previously. There was a very marked lack of amniotic fluid which made it difficult, not even for the scanners to see, that made the picture of the scan look very, very different.

So carried on with the plans, and, you know, planning for the, another baby to come along and then we went for a 20- week scan which is obviously the big one and very exciting, seeing all the arms and legs and once again everything was going fine, ‘Look heres the baby, heres the length of baby.

And the doctor – because it was a doctor rather then just the, a sonographer or whatever the correct term is – was scanning my wife, and she hovered over the heart of the baby and said, ‘Oh theres the heart, well come back to that. And as soon as she said those words, both of us were like, ‘Well what’s wrong?. Because we knew that that wasn’t normal, that wasn’t what wed experienced before, it wasn’t just the, ‘Theres the arm, theres the leg, oh look the baby’s moving. It was, ‘Oh well come back to that.

And it turned out the baby’s heart wasn’t forming properly, the chambers weren’t forming properly. So once again we were right back down, really no, really not knowing what to expect. So wed gone through the Down’s syndrome or worse scare, wed had conversations about what we would do, if it was confirmed that it was Down’s syndrome or another syndrome, another sort of chromosome abnormality. Wed sort of put those discussions to the back of our mind, and then all of a sudden there are other abnormalities so yeah it was a bit a bit of a shocker [laughs].

I think that’s an understatement.

Yeah, yeah. And it was then because we were at 20 weeks by this point, there was only fairly short window to actually, to get some more tests done, find out what the problems were, and then make any decisions that might have to be made.

And at that point I don’t think we, I don’t think we realised that there might have to be a decision, because wed talked about it with, with Down’s and the other possible problems, but at this point it was, well okay what can be done to fix the problem – because yes the heart’s not developing properly but there must be something we can do.

Mother’s So it was just, we were coming up to the 20-week scan and I was just getting more relaxed, just actually starting to look at maybe baby catalogues or, you know, going down the baby aisle at the shops, which I’d always avoided. Went off for the 20-week scan, which you didn’t, you weren’t there, were you, for the first scan?

Father’s No, no.

Mother’s So obviously quite relaxed. [Husband] couldn’t make it. Fine, go on my own. We, I was with my mum, and they scanned and found choroid plexus cysts on the brain, which is just a mark, it’s a marker on the brain, it’s a, what they call a ‘soft marker. It’s quite common, perhaps 1 in 10 they find these, and within a few weeks they disappear. But it is a soft marker for Edwards’ syndrome.

So I was, they couldn’t actually finish the scan then, the baby was moving around too much, so they couldn’t scan the heart and the stomach. I went away and came back, and she couldn’t get a good picture. So had to come back in a week’s time for a scan, which again is quite a common thing I found out. I wasn’t unduly worried at all. I had my little leaflet, printed off leaflet about choroid plexus cysts. So it was quite common, this is what happens.

I had an appointment with my consultant 2 days later, and again he said, you know, ‘Very common – shouldn’t worry about it too much, you know, if, the problem is if they find anything else wrong. So choroid plexus cysts on their own, no problem, but if theres something else wrong, then that’s a problem.

Went back a week later for the scan and, you were with me for this one, weren’t you? This was on the Friday. And I could see, before she even said anything I could see that there was something wrong with the heart. She brought up a picture of the heart on the screen. And having read, since read my information on Edwards’ syndrome, a good 85 per cent have problems with the heart. And you could see, where you should have a picture of 4 chambers, you could really see 2.

I wrote a few things down last night when we were trying to go over things, just to remind myself. But on, in the middle of March, 10th March it was, we had a 20 week scan. We must have had one before that as well, we must have had one before that, but it came back quite normal. But at the 20 week scan, which was on a Wednesday, we saw the nurse at the local hospital, the sonographer, and she did a scan and she found that the femur length was quite short in the, in the fetus.

She didn’t say at the time that it was a major problem or that it was something to watch out for. She just said, ‘It’s a bit short, it needs to be checked’ again basically. And of course some other measurements she needed to take like the width of the skull, which she couldn’t take because the fetus was in the wrong position. So she said, ‘Come back on Monday. Well make an appointment with the senior sonographer, the consultant at the local hospital, and shell do your scan and shell be able to tell you more things.

So we left it there, and we didn’t actually think that there was anything really to worry about after that scan. Possibly with hindsight we could have been more worried about it, but was probably a good thing we weren’t, because we weren’t worried about anything basically.

No, we really didn’t, with hindsight we probably should have, but not at all, it never occurred to us to be worried about it. So on the Monday we went in to see the senior sonographer, I think she was a consultant at the hospital. And that was Monday afternoon.

We went in, had a scan, I can’t remember the exact sequence of events because the baby was still in the wrong position. And so we had to go out a couple of times, [wife] had to walk around, and she had a drink of water, which is supposed to sort of change things inside, or help the baby turn around or something because the sonographer couldn’t get the measurements she wanted.

She wanted to have a look at the skull, which was the main thing, but she couldn’t see it from where the baby was. So we had to go in and out a couple of times, and we were just waiting around for ages and ages. Eventually she got the measurements she wanted.

And I remember, the first thing I remember when something might be wrong, was I saw, I finally, we finally saw an image of the skull on the screen, and there appeared to be a sort of black hole shape in the middle. I remember thinking, ‘that doesn’t look quite right. It’s, I mean you can’t tell from these scans what you’re looking at really, but I remember thinking, ‘it just doesn’t look quite right’ or something, but I didn’t give it much thought.

And shortly after that, that scan wed finished and the consultant leant back and said, ‘I’m afraid we have some problems here. I can’t remember the exact words but she said, ‘There might be some fatal problems with your baby. And at that, I let out a scream I think. I let out an animal scream and [wife] kind of leapt onto me on the bed. And… it was just a bit of a shock because it’s not really what you want to hear – you don’t really expect that.

But she told us, she told us, she gave us some more detail, she said, ‘Theres this, theres a big gap in the brain where there shouldn’t be. Which is what I’d seen. And… it’s, I can’t remember exactly what it was now, it’s about where the brain is supposed to form. It’s a bit at the back of the brain and – no I can’t remember what it is – it’s called, it’s something that’s called Dandy-Walker mal

Well, at the regional hospital it was a 3-D scan. And that was extraordinary to see the detail that that could offer. In fact, interestingly enough, going sort of. The consultant at the time wasn’t really that interested in that imagery.

It was interesting – well it was fantastic to see this fetus and to see this child that was yours that was horribly ill – but you didn’t really get much opportunity to see that because the consultant was more about measurements and all sorts of blood flow and various other screens coming up.

My wife turned the screen away from her. She didn’t want to see the baby. I did. And I’m glad I did and shes glad she didn’t. I think at that time she had come to terms better with the fact that this baby was going to be terminated, and I don’t think I was quite there. But even if I was there, I still think I would have wanted to see the detail on the scan.

The thing that I have a very strong memory of is this child’s face in amazing detail. I remember thinking, ‘Gosh’ I now know it was a girl, I didn’t know that then, that, ‘She looks just like her brother.

But you could see there was something wrong? Could you tell? I’m trying to understand because I haven’t seen a 3-D scan, what it tells the parents?

No, you couldn’t see there was anything wrong.

But you could see her face?

You could see her face, and the major aspect that was, that was the indication of what was wrong was the thickening at the back of the neck in this instance, which, when you’re looking at a fetus is, you know, sort of half a centimetre thicker or not is completely immaterial to me, and would look like a completely normal neck, but from the point of view of the consultant was severely abnormal.

Actually you could tell from the brain development as he scanned up through the chambers of the brain, that one quarter of the brain, one chamber was not evident. So I suppose from that aspect, mind you having not been told that or sitting there, I wouldn’t have thought necessarily that was odd. But it was very evident. And that was scanning up from the above the head, then you were coming up through the child’s head, so you were seeing the chambers in the brain, sort of it was evident in all four chambers of the brain, then suddenly one chamber was empty.

So we decided that, to have the scan and we went along I think early in the week for that, and spent quite a lot of time with the consultant after that.

How was that scan different from the dating scan? Can you describe the difference between the scan at this later stage in a pregnancy? Is it the same scan or is it the same equipment?

Mm-hm. I think it’s the same – in fact I think it was probably the same room, same consultant – and [sighs] I suppose it felt upsetting because at the dating scan you’re full of hope and this scan we knew wasn’t going to be good, we knew it was maybe the last time we would see the baby moving around. And it’s like, I really wanted to see it and I didn’t, and it was… it was very mixed. As you felt that, you know, it was probably going to show lots of problems and it just wasn’t what we wanted, but at the same time we needed to sort of see it and, we needed to prove it I suppose. I felt I needed proof of what was wrong before I take such a huge decision and that I couldn’t do it based on what someone had written on, on the paper.

And what did you see on the second scan?

The baby was very, very small. It wasn’t measuring at all the right measurements for the age – there was a heart defect, the limbs were sort of distorted, the arms were, you know – you could see that the arms were very sort of contracted, the hands were contracted.

There was an extra digit on one of the hands. Again the legs were quite twisted, they said that the baby’s sternum was very short – things weren’t in proportion you know – the head was quite large, the neck was very thick, there wasn’t really like a neck as such… it was just things were kind of – there were lots of things that obviously the consultant could see that we weren’t aware of. And she said that, you know, as the, if the baby did develop further there would probably be other problems with internal organs that weren’t really that visible at that stage.

So and you could see the exomphalus, this little pouch, which was obviously just the intestines where they are. And there [sighs] was a very dark patch over one, where the eye socket was, and they didn’t know it, in the Edward’s babies sometimes the eyes don’t develop properly, or it might have been bleeding, they weren’t very sure.

So it was, there was very, very little movement from the baby because I remembered first time round by that stage, you know, that the baby was quite big and it moved around a lot at a later scan. And this baby sort of floated, and occasionally there was a slight movement, but it was very you could almost see that he was really poorly just from looking at the screen.

Did you, how did that scan make you feel?

I felt more informed, and I felt that that was what I needed in my head to see you know, that I’ve got to accept now that this, all these things are real on the screen and this was really my baby that’s suffering all these things [sighs], but I was sad as well. Hugely upset that to think that the baby was so poorly. And I, and, I felt the weight of deciding what to do about it. And at the end of the day however much we talked about it – that it was going to be the two of us to make the decision and me to actually you know, go through it and decide that that was what was going to happen for him – and I just, I didn’t want to do it.

But you know I knew we had, we had to make a decision that was right for the baby as well. And still we asked to see apaediatrician to speak about, you know, what these things meant for the baby. And we spoke to lots of different people, and I think we were, we were desperately looking for someone in the hospital who would say you know, theres a glimmer of hope or I could do this for the baby’ – and there wasn’t anyone anywhere in the hospital who could offer the baby a better outcome.

And basically, we were just told that, that he was, he was dying, and that really it was my body that was just keeping him going – and I wasn’t very well – and that that was possibly toxins from the baby that were in my system and they really didn’t know how the pregnancy would continue if we had continued. And that it, if he was born… that most – I think they said, about 50% percent of Edward’s Syndrome babies would die within the first 6 months, and the other 50% within the first 12 months – and that our baby had the, the full syndrome, so it affected all parts of his body and that his brain wasn’t properly developed. So there wasn’t any future for him, and that we wouldn’t be able to ever take him home. So that even that sort of the option of, you know, having him at home and just caring for him wasn’t going to be open to us.

Where we were living then at the time you only had a scan at 20 weeks. So at 20 weeks I went for my scan with my husband, with my daughter, to get our photographs. And it was Christmas Eve and at the time I didn’t think, the sonographer did spend a little bit of time scanning us and queried my dates several times and then explained that she couldn’t quite see the baby’s heart properly and would we come back in a couple of days;

At the time the same thing had, exactly the same thing had happened to my friend a month before, and her scan was absolutely fine. So when that happened to us I really didn’t worry, I thought, you know, it was literally the baby was in awkward position, they couldn’t see the heart and that was why;

So we went back the day after Boxing Day, the 27th, and the consultant greeted us, which made my alarm bells go, and she started scanning us and I think her lines were, ‘What concerns me about this baby is that they’ve got a diaphragmatic hernia, which has meant that part of the stomach of the baby was in its chest cavity.

And then I can’t remember an awful lot more about that scan apart from that feeling of searching of how to react in an unknown situation – your brain’s kind of trying to work out what to say, what to do, but I had no idea what to say or what to do and I think my first thought was, does that mean our first daughter’s okay? Could she possibly have something that’s not been detected; Which she reassured us that shed be absolutely fine, this was a one-off;

After that I got, I, it was about in, in 19-, hang on a minute, 2001 I got pregnant again, slightly unexpectedly. And I went for, I went for a normal 12-week scan, at my local hospital and everything, they said everything was fine, there was no problem.

So I sort of went home quite, fairly kind of happy and I, at, at this point I hadn’t any idea things could go wrong anyway. So I was a bit ignorant of the kind of things, you know, what the scans were really doing – maybe it was, a bit na’ve I think. And then, so I went to my next scan, which was the 20-week abnormality scan, and we took our first child with us, I think he was 17 months old at the time. And that, that was when things where it started going a bit wrong.

I mean the lady who was scanning was very quiet for a long time. I did think it was a bit strange that she wasn’t talking, and then she sort of said, ‘Oh, I think theres a problem. I think there might be a problem. And she sort of got up and walked out of the room and called someone in. And they, sort of two of them were looking at the scan machine and then they sort of switched everything off and said, ‘Oh, I think we have, might have a problem.

And they took me into another room. I think I don’t… everything just seems a real blur because it was, it was such a strange experience. I couldn’t really believe what they were saying. And they took me to another room and they explained that the baby had what they thought was ventriculomegaly or something. I didn’t really know what that was. They sort of drew some diagrams, and they said, ‘But we need to refer you to a specialist to confirm the diagnosis. And, so they sent me home at that stage because they said the specialist wasn’t available till the following day, which was awful. I found… It would have been nice to see someone straight away because I was in such shock.

So we went home really and I sort of had to think about it all night. I didn’t sleep that night I don’t think. And the next day we went back to the hospital and we had another scan with a specialist, and he confirmed it was a condition called holoprosencephaly, which I’d never heard of any of these words before, they were just such long words. And I’d been on the internet looking up all sorts of things and everything was so negative, it was very depressing, because I thought, ‘Well, maybe they’ve made a mistake, or maybe it’s something they can fix, I don’t know.

It was the end of January, very end – about the 29th – I’d gone into, I’d gone into 5 months by then. I think I was about 20 weeks cos they, the hospital I think did the 12 and the 20, that was their standard thing and, yeah, so I got the 20 weeks one.

And again, you know, you read all the books and it tells you ‘this is the diagnostics’, but after a while you don’t hear that inside your head any more…

Do you want me to turn off?

No, no, no, I’m fine – because everything’s perfect. You’ve had a scan, you’ve had the blood tests, you’ve been good. And everybody knows and everything is right. And so this one can’t tell you anything, it’s pictures, you’re going, you’re going to see your baby, you’re going to get pictures. After the triple test you stop thinking, you stop thinking that anything can go wrong. And, it does not occur to you in the slightest. The only thing you’re thinking now is the birth, and what if something goes wrong in the birth?

Your mind has closed to the possibility that there could be anything wrong. You’ve had, you’ve had your Down’s Syndrome check and that’s okay. You’ve had your, you know, you’ve had your triple test and everything was fine. This one cannot show you anything, that’s what’s inside your mind.

I can feel my child kick, it responds when he shouts at football – I mean literally, this baby used to dance around whenever hed like scream at a goal – and there cannot be anything wrong with this child because it’s part of us already. It’s part of our family. And nothing prepares you at all. You know theres always that bit on the bottom of the thing, ‘These are diagnostics, do not bring other children,’ – blah, blah, blah.. it’s not, you know, it’s not a family outing kind of thing, but it feels like it. I mean, you just, you’re just overwhelmed, it’s so much fun. Were going to go and see them.

Wed just spent some time away on a, on a summer holiday and come back expecting to have this scan and be told, ‘All fine. Away you go. My wife had been very, very healthy, more healthy than the first pregnancy, and of course was shattered by the fact that the news, the news was appalling, very serious faces.

The thing about that which I felt was difficult is that we could tell when being scanned that there was something very seriously wrong. No sort of questions about, ‘Do you want to know whether it’s a boy or a girl?’ or sort of light chat that wed, wed experienced before with previous scans. It was just sort of deadpan faces, very serious looks, someone else coming to check. And I wish that I’d been told at that point, that somebody had actually turned round to me and said, ‘Look, I’m sorry, but I think theres something very wrong. We don’t know, but it’s not looking good. And that was a terrible moment to be sort of hanging on, waiting.

I know it sounds odd that you want to hear that it’s wrong, but you, you know it’s wrong, and you, you want to be reassured either that it’s okay or is there something seriously wrong. And in this instance the scan was very evident that there was something very seriously wrong.

And the local hospital wanted to send us off to the regional hospital to actually confirm that, and were not really prepared to say at that time that there was something very seriously wrong. At that point, I got very not upset but quite sort of strongly severe sort of with the people at the hospital saying, ‘Look, you know, that’s 24 hours, possibly a 48 hours’ wait – that’s not something that’s tenable. We need to have your opinion. At which point they turned round and said, ‘Well, there is something very seriously wrong with the baby, we don’t know exactly what, but you do need to have a more in-depth scan at your regional hospital to find out the detail. So at least then we went to that next stage prepared for the worst really.

And so, yeah we got to, carried on with the pregnancy, kept seeing the consultant, kept sitting in the waiting room outside, because there was a terribly long waiting time sometimes, depending on what time you had the appointment. It seemed a very arbitrary system, and so you quite often sat outside in the waiting room for a couple of hours before you actually got to see the consultant, which was, seemed you know, I kind of remember thinking before we went in to see him on the particular day when we found out there was a problem, ‘Why are we sitting here? Theres nothing wrong, you know, weve had all the tests, everythings fine,’ and being very upbeat about it all. And I, my husband and I both ran our own business at the time so we were desperate to get back and do some work, and things were going really well, so..

Anyway we went in for the meeting with the consultant on this particular time, and wed got to, I was 30 weeks pregnant by then. And you know, we were laughing and joking. I’d had the scan in the scanning room, I can’t remember what they call it now, it’s silly, it’s gone from my head. But everything seemed fine and wed been sitting waiting to see the consultant, and I’d had an examination on the bed. And my husband, we never got to sit next to each other in the consulting room, my husband was across the room from me, and I was sat next to the consultant, and we were laughing and joking with him about, you know, the home delivery, and everything was going to be, ‘Are you still on for the home delivery?’ ‘Yes, if that’s okay with you,’ kind of thing, like you do. And it all seemed so near at hand, you know, 31, 30 weeks, you feel like you’re nearly, you’re on the home stretch.

And then all of a sudden, I was still laughing and we were all very upbeat, and then suddenly, he suddenly said, but I was still, still laughing, and he said to me, ‘Oh, there might be a problem, there might be a problem with the, I think this baby has hydrocephalus. And I said, I was still laughing, and I thought he was joking with me, and he said… now I sort of could tell from his face that by that point he wasn’t really joking anymore. And I can just remember flashing a look at you as if to say, ‘Have I made a mistake here somewhere? Have I misunderstood what’s going on?’ Can you remember that minute?