Interview AN36

Age at interview: 38

Brief Outline:

Nuchal scan in first pregnancy gave low chance result, but anomaly scan at 21 weeks detected a possible condition, confirmed as Edwards' syndrome by amniocentesis. Couple decided to end the pregnancy.

Background:

Children' First pregnancy ended at 23 weeks, Occupation' Mother - Executive coach, Father - Chartered accountant, Marital status' Married.

The nuchal scan reassured them, but with hindsight they felt they did not really understand the...

Anyway, so the morning that we went to have the nuchal scan, I was pretty apprehensive, I think we both were nervous. But also excited, I guess, to sort of find out. 

And we didn't wait too long, and then we were called into this very dark room and met the sonographer, who was pleasant. I mean he wasn't particularly sort of good company but, you know, he was sort of very matter-of-fact, and sort of sat me down on the bed to do the scan. 

And I, again, I had no idea what to expect really and, so he lay me down and then he said, you know, there's this, that he was going to do the scan, and the reason why it was dark was so that he could see as much as he could of the baby. And the way it was set up was that I was lying sort of head looking at the screen, and then he was sitting slightly to the right of me, so that I could see the screen which was, which was amazing. 

And my husband just sat just next door to me and held my hand whilst it was all going on. And he put this freezing cold gloop on my stomach, and then started pushing really, really hard with the little instrument they use. I have no idea what it's called. 

And I was amazed at how forceful he was pushing all this stuff on. And then, ping, on the screen was this little baby, and it was just amazing. I mean to see it was just, I couldn't believe it and I couldn't believe that this little thing was in me, and I had, you know, I couldn't feel it and I had no idea, it was just incredible.  

So the two of us were sort of, 'Ah, oh my God. You know, this is just, it's just wonderful.' And he was clicking away and doing all these sort of clicks and little crosses appearing on the screen, and I was asking questions about what he was doing and, you know, how many of these he did?  

And this particular chap was, that's all he does, is nuchal fold scans, so he's, you know, probably in terms of the people in - well, especially in this area - he's the guy to go to. But that's, you know, his life. So we felt reassured that he knew what he was doing, but again I would have, having never had it before, I didn't, I wouldn't have thought to ask, 'Is this the best person to do it? Is he the best in the country? You know, is there somewhere else I could go where somebody would be more qualified or not?' 

And we were there for probably about half an hour and he, when he finished clicking away, it sort of all fed into his computer, and then he printed off a piece of paper for us that gave us our risk of Down's. Now, prior to going into that, my sort of published risk of Down's was 1 in 240, I think. And then once he'd finished it, it was 1 in 958, which he said was a very good result, and that I shouldn't be worried about it. And I asked him if we should have any other tests, and he said, 'No, no, no.  That's a great result, don't worry.'

Had you been offered amnio?

No. I'd, again, I'd been given a leaflet that mentions, 'Oh, by the way', but I mean I hadn't read them, because I didn't know what it meant. I didn't, you know, I didn't understand that screening is risk factors based on information that is not necessarily accurate. And, you know, a risk of 1 in a million is irrelevant if you're the one, so to have, at the time we thought that was fantastic, we thought 1 in 958 was great, and therefore everything was going to be fine. And I remember we left that hospital just on cloud nine.

She did not really appreciate that the 20-week scan looks for particular conditions, despite...

So on the Friday morning we went to the NHS hospital for the anomaly scan, and my expectation of that was to be told that everything was fine, and the sex of my baby. And that was, that was all I thought was going to happen, because there couldn't have been anything wrong because everything so far had told me that everything was okay.

And even though I read the leaflet that said, you know, this condition and that condition and - none of it really sunk in and it wasn't, everybody had suggested to me that the scan was to make sure that everything was right, not to tell me what was wrong.

And, you know, I can look back and think, how stupid I was that I didn't actually stop and think, why is the NHS investing this money in me if everything's going to be alright? I mean, they're doing it for a reason and the reason is, the negative reason rather than the positive one, but I just didn't, neither of us thought that. We just didn't think that at all.

At the 20-week scan, the sonographer seemed bored. When he started to find problems she found it...

So, we turned up at the x-ray department, didn't wait at all, went in and met the sonographer, who said sort of very early on that he was not really that interested in screening pregnant women, he found them quite boring. 

He was more interested in screening people that had problems that he can investigate so that was things like kidney problems or, you know, something wrong with their internal organs, and that was far more interesting than screening pregnant women. 

And to let me know that, you know, within the next couple of weeks he was handing it all over to the maternity unit because he wasn't that interested in it.

Which filled me with joy. And the way that he set it up was that he got me, his screen, the screen was by my head facing him and he made me sort of tilt slightly down, which was his particular technique for doing the screening. And my husband stood sort of in the corner of the room and I think he could see the screen but I mean there wasn't really any facility for him to sit near me or, you know, be able to - it was almost like he was, it was irrelevant that he was there. 

And off he started and again we saw the baby on the screen. Sorry, he saw the baby on the screen. And he was chatting away about all sorts of bits and bobs and then he said, 'Oh, I'll show you this' and he showed me the spine. And then he turned the screen away and he said, 'Oh, that's funny.' 

And then turned the screen towards me and he showed me the baby's hands, and they were in a position like this. And I looked at the screen and I thought, 'Oh gosh, what's wrong with his hands?' And he said to me that they would keep watching for a minute and they'd probably move. And so we watched for, I don't know, maybe 2 or 3 minutes and they just, his hands didn't move at all.  

And I thought, 'My God, we're going to have a baby with funny hands.' And I started crying and I just thought, 'Oh crikey, you know, what are we going to do? He's going to have, he's going to have to spend his life with these funny hands, and how awful that would be.'

Insensitive communication in her 20-week scan made her panic. She could not believe her baby had...

And then the sonographer turned the screen back again and he said to me, 'Have you got the results of your anomaly - of your nuchal scan?' And I said, 'No,' and he said 'Oh. Oh well, there's probably nothing to worry about. Hang on a minute.'  

And he got up, and he went and got a book off a shelf and sat down and started reading through this book. And I said to him, 'Is there something wrong?' And he said, 'No, no, nothing to worry about.' And then he came back, and then he said, 'Oh', he said, 'I can't find it's stomach. Oh well, sometimes that does, you know, that can happen,' because babies at - I can't remember what, what stage in their development - but start to drink amniotic fluid, so you can see that in their stomach and you can see it in their kidneys, and he said - and their bladder - and he said, 'Well, we'll wait a bit and see if it happens.'  

So then he went back to his book and started reading whatever it was in this book. And I was really panicking at this stage because I thought, you know, 'There's something not right and I don't know why he's not telling us.' And then he came back again and he said, 'Oh, and I can't see it's kidneys, and I can't see it's bladder. Oh, right, okay. Well, hang on a minute, I'll be back in a minute,' and he left us and went out the room.  

And I thought at that stage my husband came over to me and I just burst into tears, I mean I was just having hysterics, absolute hysterics. And he was gone for about, I don't know, 10 minutes? Left us by ourselves. And then he came back and he said  'We need to do some more tests on you. We're going to take you over to the maternity unit.' And I said, 'Why, what's wrong?' And he said, 'Oh, there's nothing to worry about.'  

And then he walked us through the sort of underground tunnels of the hospital, rather than through sort of all the public areas, and I couldn't believe what was happening. Anyway we got to the maternity unit and we were met by this wonderful woman who just put her arms around me and she said, 'Come on, let's go and look at your little one.' And it was the first time that somebody had kind of referred to the baby in a sort of a soft way.  

And so she took us into another room, and the scanner that she was using was a similar level to the one that we'd had for the nuchal fold, and it was, you know, extremely high-tech. And she sat there for about, I don't know, maybe half an hour in complete silence, didn't say a word to us. And then she finished and she turned the screen - we couldn't see the screen, so it was again the same, that she was looking at the screen and I was sitting sort of with my head behind the screen. 

And she said to me, 'Okay, I need to tell you that the following things are wrong with your baby.' She said 'His brain's not formed properly, and his heart's not formed properly, and he's got no stomach and no kidneys and no bladder, and he's small for his age, and he doesn't have this part of his arm and his hands are malformed and he doesn't have the sort of upper part of his legs either.' 

And then she started talking - I have no idea what she said, I can't remember - but she just went into techy talk about that these were markers. I remember her saying markers, these were markers of a, something. But I wasn't listening, I mean, I was just crying and crying and crying. And my husband was crying, and we just didn't know, we didn't know what was going on.  

And I remember thinking, 'They've made a mistake, this can't be right. They've got, you know, the previous person’s baby on the screen, and this isn’t our baby, and he can’t be, he can’t be that poorly.’

Waiting for the amniocentesis results over a weekend was awful. They searched the internet for...

And we came home, and my parents-in-law were coming for the weekend, and we just went into sort of overdrive, really. Not quite aware of what was going to, happening to us and I remember looking in the mirror when I came home, and I wasn't there any more. I couldn't, I couldn't see me in the mirror. It was someone else there. And that stayed for months and months and months. 

And we spent the weekend just crying and crying and crying, and searching on the Internet for anything that we could find out about all these words that they'd said to us. And probably by Sunday night we had contacted a number of organisations, or got details of a number of organisations that could help us. And it was difficult to find the information. It's not easy, it's not easy to find. And we got details of SOFT [Support Organisation For Trisomy 13/18 and related disorders], which is an organisation for people with trisomies.  

We got information from SANDS [Stillbirth and Neonatal Death Society]. We hadn't found ARC [Antenatal Results and Choices], we couldn't find, we didn't know they existed and we couldn't find ARC at the time. And we'd read and we'd read and we'd read information. And there was one web-site that we found they gave you a number of the genetic conditions and sort of a tick-list in terms of what was wrong with a baby that gave it that particular condition, and so we'd decided by the end of Sunday that our baby did have a trisomy 18, and every single one of the things that trisomy 18 indicated was everything that was wrong with him. There wasn't anything that wasn't there. 

And then we continued to read that babies with that condition just didn't live. I mean they didn't, it's not like they had a chance of anything, really. They just, if they got, actually managed to make it through being born, which was traumatic enough for them, then, you know, without a stomach and a heart that didn't work, they just couldn't live at all. And I kept thinking all the way through the weekend, 'I wish you'd just die.' I wish he'd miscarried because of the amnio. 

I wish that, you know, we could stop our suffering through natural intervention, rather than having to decide to do anything. And I remember my Mum came over on Sunday to see me, and she just said, 'Nothing is going to make this any easier.' And from Friday morning, when we were expecting the best news, it became, he became a person. He became a very special little person that we started talking about, and it just became so real, really.

And then we phoned the hospital on Monday and they hadn't got the results, and then we phoned on Tuesday morning and they hadn't got the results. And they phoned, phoned me at about Tuesday lunchtime and said, 'We've got the results back and it confirms that he's got trisomy 18', and could we come back on Wednesday to see the consultant? And we said, 'No, we want to see him today.' We just, you know, we were in agony. We just needed to talk to people and know what to do.

It was valuable advice to take time to reflect on their decision to end the pregnancy and keep...

And we had spent hours over the weekend and on Monday, and also on Tuesday morning, deciding what we were going to do, and then testing each other's resolve on what we'd decided to do, and then questioning what everybody would think of us if we did this thing or this thing, and how we would feel once we'd made that decision and how we would live with ourselves making that decision.  

And we decided that we'd end the pregnancy because we couldn't put the three of us through the suffering of potentially him dying during pregnancy or him dying during labour or him living for two days in absolute agony. Because there's nothing they could do. They couldn't, it's not like they could operate on him, because he was so wrong. There wasn't really anything that was right with him.

And I remember, actually, they hadn't told us that it was a little boy, and I'd asked on the telephone when they gave me the results if they knew what sex it was and she said, 'Oh, I've not looked at that.' And I wish they'd told me. I wish they had thought that that was important to tell me whether he was a little boy or a little girl.

So you only found out afterwards?

No, we found, we actually found out on the Tuesday afternoon. I asked, I said, 'You know, you've got to tell me' and he went off and got the piece of paper back from the clinic that said that it was a little boy. And then, he talked us through sort of the process of termination and we'd said that that's what we'd agreed to do. And he said, 'Well, take some more time to think about it, and contact me tomorrow and let me know.'  

So we went away and we spent another day deliberating and crying and reading, and trying to think of an easy way out, but there wasn't one at all. And then we went back on, then we phoned him on the Wednesday to confirm that that's what we wanted to do. And, at the time we, time moved so slowly. I just remember thinking that hours just passed like days and I just wanted it all to be over.  

And I remember them saying to me, 'You know, you need time to think about it'. And in hindsight, the time that they gave us was so precious because in that week that we knew he was a little boy and we had actually a wonderful week with him. It was quite incredible. 

We went to see our wedding photographer who took photographs of me pregnant and I have no idea how we managed to look so happy, but we did. And we went out, and we went to places with him that, you know, special places to us, and it was amazing.

Having sympathetic care during the termination was important, including a midwife who cried with...

The, I mean, the staff in the maternity unit were just, were just amazing. I mean, I can't understand how anyone would want to do that as a job. It's just horrendous, it's absolutely horrendous to deal with someone like me who's going through it, and to try and be calm and professional.  

But the midwife that was there that actually delivered our baby was, she was just lovely. And, I mean, I think she's an angel because she cried with me. I mean she held my hand and she cried, and for her - I said to her, 'You know, you shouldn't be doing this,' and she said, 'I can't help it. You know, I just, I get involved with my patients', and you know, she was just amazing, absolutely amazing.  

So, I can't fault them, I can't fault the care at all. They were just, you know - and when I've heard of other things that other people have gone through, which has been horrendous compared to the care, they did everything they could.

Having an injection to ensure the baby died before the induction at 23 weeks was not as bad as...

On the Thursday I had to go, I had to phone another hospital actually, to have the feticide, as they call it, performed. And I was petrified, absolutely petrified about that, because they'd said to me, you know, that they'll give an injection in his heart, and I couldn't - I was having nightmares, I hadn't slept that week at all - and I couldn't understand how they would put a needle in his heart when he was moving as much as he was.  

And I just thought, they can't chase him around and do that. They just can't do that, it's just barbaric. And I made, we made the appointment for the Friday morning at 8 o'clock, and we had to go to this particular hospital which was further away and we got there really early and we sat in the car park, and I didn't want to go in. I just thought, 'I can't, I can't do this, I can't, I can't kill my baby. I can't let anybody do that.'  

And there were sort of beautiful grounds of the hospital, so we walked round them and we said good-bye to him. And then we went into the hospital, into the maternity unit and again, I mean this is sort of every time you go in and you sit in a waiting room surrounded by pregnant women, or new babies, and we were left there for about 25 minutes with half a dozen pregnant women around us. 

And it was just horrendous. And I just don't understand why they don't think about that, and put you somewhere else or meet you the minute you get there or just something, because it's just so painful. Anyway, we were met by the chap that was going to do the procedure, who was just amazing and I was panicking and I was shaking. 

And he took us into the room and he said - and I didn't, I couldn't get my foot over the door, I couldn't go in the room - and my husband and he kind of grabbed my arms and took me in and they lay me down and he said to me 'We're going to give you an anaesthetic which will minimise the discomfort to you, and we will inject the baby through the umbilical cord, so the baby will feel nothing at all.'  

And having been told one thing and then this chap telling us something else made me so pleased. I mean, it was ridiculous, really, but I was so relieved that the way they were going to do it, the way that he said that they were going to do it. 

And I lay down on this, again, on the couch and they had a screen and I don't know what they were doing. And I probably had my first ever out of body experience, because it was so awful and I couldn't, I couldn't be there. And I remember walking round an island in the Maldives, and the sun was shining on me and it was beautiful and I just, just disappeared, absolutely disappeared. 

They were very quiet and they were, I didn't feel a thing, I didn't feel anything. And then after about 15 minutes they just said to me, 'it's all over,' and then they walked out the room and left us, and I screamed and screamed and screamed. And then a nurse came and took us out and put us in a sort of separate room and we just, we must have been there for, I don't know, about an hour, not believing what we'd done and just feeling wretched.

Counselling after the termination helped her and her husband understand their different ways of...

And what they would typically do was, because I was always far more emotional than my husband and I would always, there would always be something that had happened since our last session that would make me cry. And I found out that I was crying, most days there would be something that would make me cry, and whether it was a little one or a big cry just depended on what the particular situation was. 

And my husband had gone back to work, and was working like a complete idiot. I mean he was working sort of 18 hour days and throwing his heart and soul into that. And what they did during the sessions was spend time talking to me about what I was going through, because I wouldn't, you know, when my husband came home from work I wouldn't have said, 'Oh, I've had a horrendous day and such and such happened and I cried,' because I wouldn't want to trouble him with that information.  

Whereas this situation allowed me to talk about what had happened to me, because he had no idea what was happening to me, and in a situation where he wouldn't say, 'Oh, you're being silly,' or 'What on earth did you do that for?' or 'How embarrassing' or 'Can't you control yourself?' or 'I'm really sorry, how awful for you', or any of those kinds of things. It was very controlled.  

And so that whatever he said to me, they would then say, 'Well, you know, have you thought about maybe that she's feeling this or maybe that she's feeling that?' So it was a really good way of me communicating through the counsellor to my husband. And then, she would then pick up information that he'd said and come back to, 'You said such and such about how, you know, people at work aren't interested in talking to you and - tell me what that feels like, and talk me through that.'  

And again, she would then enable me to hear how he was grieving, because he wouldn't tell, he wouldn't tell me. And the main difference is that men try and be restorative, so they want to make their partner feel better, want to take their pain away, want to look after them, want to provide for them. So they go off to work and they deal with it, because they're blokes and they have to.  

And when I'm crying, he can't cry because he has to comfort me. And when he's crying, I get upset because he's crying and I cry, which is absolutely no use to him whatsoever. So this gave both of us an opportunity to express how we were getting on with our grieving and really understanding how different it was for us. And I also noticed that my husband would get very angry with me about ridiculous things, you know, like I hadn't put the plate in the dishwasher or whatever it was, and he would blow his top.  

But it wasn't about that. It was the fact that something had happened to him during the day that had made him think about our son and he couldn't deal with it at the time, so it had been in the back of his head all the way through the day, and then something in the evening would cause him to pop, and that was it. 

So I needed to understand that his anger wasn't the fact that, you know, that the plate not being in the dishwasher was a problem. It was actually the fact that he needed to sit down and talk about what was happening with our son. And also that he, whereas I wanted to tell everybody, quite happily and willingly tell people, complete strangers, friends, family, I just wanted to talk about him all the time. And it didn't matter how upset I got, I just, I wanted to tell people.  

Whereas he didn't want to tell anybody, and would keep it very, very close to his ches

She still feels screening is valuable, but thinks that the way it is presented to women is too...

I mean, I have to say that I think that screening is a good thing. It's a good thing because, irrespective of the stage during my pregnancy, it picked up that my baby wasn't well, so therefore it is hugely valuable. And therefore I think it's important that it's done. 

My concerns with it are that the way that it is presented to pregnant women is not as rounded as it should be in that - I mean, it's very difficult when the majority of pregnancies are okay to be all doom and gloom.  

And I am sure there is a, a very fine line between scaring the daylights out of people or making them think that everything's going to be okay. But at the moment I think that it is in favour of, 'Everything's okay. This is just to show you that everything's okay', rather than 'This is because things go wrong and this is why we're doing it.' And I think that follows from every piece of, every book that I've read, and every pregnancy book that I had, bought, borrowed, whatever, not once, nowhere in the book does it mention termination, anywhere.  

And it's horrendous and nobody should ever want to read it, but it's almost like they should have a chapter about it - at the back of the book, hidden - that says, you know, somewhere, small print, 'If you want to know about this read it. If you don't, don't. But it's there for you if you need it.' 

Because, you know, if we'd had the ARC [Antenatal Results and Choices] leaflet before we had any screening, if we'd had the information now that we had before the screening, we'd have done it differently. We'd have wanted to know who the best man was, and we'd have wanted to know what the gold standard of testing was. And we'd have gone there. And it wouldn't have mattered what it cost. For us, we're in a situation where that doesn't matter to us. 

But, you know, again, if I could make it right, every woman should be able to have gold standard, but the resources aren't there to do that. Why?  Well, I don't know. You know, that's a bigger question than I can answer. But you know, and it shouldn't matter whether you go to this hospital, or that hospital. It should be the same. 

You should get the same piece of equipment, with the same qualification of person, doing the same test under the same conditions, looking for the same things. And that it should be followed up. That it shouldn't be reliant on the mother to come back and tell them what happened. That they should be able to track it, and the data should be shared through all sonographers, through the whole of the country, to make sure that, you know, that the risk factors that they give you aren't risk factors from 10 years ago. They're risk factors from last week, because it changes all the time.