Interview AN17

Age at interview: 39

Brief Outline:

Hydrocephalus detected by 20-week scan and amniocentesis in first pregnancy. Felt the decision to end the pregnancy was rushed. Miscarriage and two healthy pregnancies since.

Background:

Children: First pregnancy ended at 23 weeks. 2 children (ages 4 and 2), Occupation: Mother - management consultant, Father - chartered surveyor, Marital status: Married.

She thought her baby's hydrocephalus may have been suspected at the nuchal scan in her first pregnancy but she was not told.

Yeah, when I, well, when I actually had my first baby it was at a hospital where they were actually trialling it, so I've actually had nuchal fold measurements done at twelve weeks for each, all of my pregnancies. Because of course by the time I then got to my second and third pregnancy it was then sort of becoming more routine in all of the other hospitals, so.

And so that was your first screening experience, with your first baby. Was that --

At the 12 week scan, yeah, yeah.

And how was that?

Well, I mean, we thought it was lovely, you know. We had a photo to take home, for a pound, you know, and all the standard things, although with hindsight I think they had already detected problems at that point, because she, the, you know, the woman who did the scan was very, you know, she asked us in quite a lot of detail about dates, whether I was sure on dates, whether I might have got the dates wrong. You know, so obviously even at that point the head was enlarged. But they didn't tell us that, obviously.

How do you feel about that in retrospect? That they didn't mention -

I suppose it's the best thing, really. Because I mean, all I - what would they have done? They would have said, "Oh, the head's enlarged and there may be a problem or there may not be a problem. It might be that your dates are wrong, or it might' - I mean, it wouldn't have helped anything, and it wouldn't have made the outcome any different, so from that perspective I suppose it's quite, quite good. 

Although it did - at the time I didn't feel, thinking about it, it did sort of make me feel a bit, a bit nervous, the fact that she did - it did sort of trigger something subconsciously, I suppose, that, you know it was a bit strange, that she was being so questioning in terms of dates and things like that.
 

She was worried in the waiting room between scans, and would rather have been told immediately that they suspected hydrocephalus.

We were just in the waiting room. But I mean, we didn't know at that point that there were any problems, so I mean we sort of said to each other, 'Well, I hope everything's okay', you know, because - and my husband just sort of went, "Oh yeah, yeah", because he's a bit, sort of - I used to be a nurse, so yeah, I guess I sort of clicked a bit more than he did, you know?  

And I was really worried when I was in the waiting room, and I would have rather that they had said that they thought that there was a problem, but they weren't sure, and that they were going to get somebody else to come and have a look at it, and that they were open and honest with what they were going to do. Because it, you know, all - I just spent fifteen, twenty minutes really, really worried.

And how far had they talked to you during that first scan?

Well, they'd talked quite a lot, you know, to me in terms of the fibroids, you know. We must have spent at least half the time on the fibroids, you know, and as they went through all the measurements, and things like that they, you know, they were sort of talking. 

They showed me his heart, and his kidney, and, you know, his spine and his legs and all that sort of thing. And then when they got to the head they sort of were, a bit sort of like, 'Oh come and' - because the other one was sort of writing things down, you know, while one of them did the scan, and then we they got to his head, you know, they were sort of like, 'Look at' - you know 'Ooh, look at this', you know - only like [whispering] 'Ooh, look at this' - and to each other, but not to us.

They didn't tell us there were any problems. They didn't say the head was slightly large, or anything. As I say they asked again quite a lot of detail about dates, and were we really sure, and that sort of thing. In fact what they actually said was his legs were quite short in comparison to the size of his head. And I remember my husband saying, "Well I've got quite short legs". 

But they didn't just come out and ask properly, or say anything, that they thought - and they must have known, because if it's so obvious, you know that there's a lemon shaped head, and things like that, I think they should have just said at that point and then just taken us off to a, I don't know, a side room or something, and given us a cup of tea, and waited for the next person to come and look in more detail.
 

She would have liked a scan photo to remember the baby, but was too embarrassed to ask.

And she asked us if we wanted some phot-, in fact no, they didn't ask us if we wanted photographs, actually. And that's my one regret, is that I haven't got any scan photos.

From that 20 week scan?

Because for all my other children I have. And you know how you put the money on the machine when you go in, because you have to pay for them. You know, we normally get sort of like, I don't know, three or four photos, one for us and one for my parents who live quite a way away, one for [husband's] parents - and I really wanted the photos, but I was just too embarrassed to ask for them.

So you knew at the time that you wanted one, but you just couldn't ask?

Yeah, I just sort of feel, I don't know, it's just like it, they were all so busy doing other things, you know. Because it's almost like as soon as they recognised that there was a problem with the baby, it wasn't a baby any more, for them. It was a problem. And it's sort of like they passed, just passed that assumption onto us as well, that we wouldn't be interested in it as a baby either.
 

Sometimes healthcare staff assume you will have further tests. When the nuchal scan results in her second pregnancy indicated an increased chance of a problem, she would have found it hard to say no to amniocentesis.

I very nearly said no to it, actually, because I just thought, “I just, I'm not interested in knowing.” But then I thought, well, I better had.

What made you in the end go ahead with the amnio, having thought, “Maybe I won't”?

Well, it was just difficult not, it was very difficult not to - to say no, if you see what I mean. Because I think just the general assumption by people in the medical world is, “Oh, you've got this result - oh, and the next step in the process is to have an amniocentesis.” 

I'm not, thinking back on it, I'm not so entirely certain it was ever asked in such a way as, “Do you want it?” It was more sort of like, “When are you going to come in for it?” type thing. Not quite that way, but it, I think that it would have generated a lot of sort of surprise and bewilderment, if I'd have sort of said, “No, I don't want it.” Do you know what I mean?

She felt too much information about the process of termination might have deterred her from having one. She wanted information and guidance in stages.

In my heart of hearts I knew I had to do it, but if I'd have had all of that extra information given to me about what was involved in a termination, before I'd made the decision to have a termination, I think it would have placed even more guilt on me, and I don't think I'd have been able to do it, and then you know, my husband obviously would have still wanted to have gone ahead with it, but - do you see what I mean? 

I think it's better to go through the details, the minutiae of how the termination will occur and what will happen, and how you'll feel and how you'll be treated and things, once you've made the decision to have the termination. Because you can always change your mind after you've made the decision to have the termination, if after you've heard that you don't want to go through with it. 

But I don't think the actual mechanics of having a termination should be influential to the decision as to whether you keep or you don't keep your baby, if you see what I mean. I think you just have to incrementally - you know, it's a lot of new information to take on and I think you have to - you can't just overload people with it, I think you need - it's almost like you need a little project plan in terms of what you need to go through, and do things. 

Because when you're getting all that information, your mind is just totally, you're all over the place. You're completely unstructured and I think you need people there to - not guide you in terms of influence your decision but guide you, to keep you, to guide you in a structured way through the decision-making process, if you see what I mean. Other-, because when, after - not that you notice it at the time, but I think afterwards, when you mull over about it for years, you do start to pick all the little gaps, and think, 'Well, if I'd have done that then' and - do you see what I mean? Whereas if somebody had gone at it in a much more methodical and structured way, it would have been better.

What particular points would you have liked more structure around? I mean, you said the period where you might have waited for another scan would have been one possibility? Are there other areas where you think things weren't structured enough?

I just - I think it's just more in terms of the speed that it all happened at, and just you're so overloaded with information, and everybody's always trying to move you on to the next decision, and the next decision, without really ever giving you any time to think about what you've just agreed to, and the current decision. Because I guess they understand everything that's involved, so they just gloss over things.
 

She wished in retrospect they had taken longer to make the decision to end the pregnancy.

I think my husband definitely wanted to have a ter-, I think he understood before - I just kept clutching at straws, thinking, 'Well, maybe we've misunderstood them. Maybe there's something wrong, maybe they can do something.' And, you know, I think my husband was a lot more - a lot less emotional about it all, and listened to what they said and understood it, instead of listening to what they said and trying to interpret it differently which is what I did. 

So anyway then we went back to the see the - we went back to the north London hospital then, and saw the other consultant. We decided we wouldn't go back the following week to the fetal medicine unit. I think with hindsight I wish I'd taken longer to reach the decision, and I wish that I had have gone back.

What difference would that have made to you, do you think?

I just think it would have helped me to have sort of come to terms with it better before it happened, rather than just - it was all just such a rollercoaster, and it was such a - it was all so quick. I never really had a chance to think about any of it until afterwards. 

And then you spend months with all the what ifs? And at that point there's nobody around who's knowledgeable to talk to, because you've been filed away and it's all sort of closed from their perspective. So that's, you know, you have all these questions, and there's nobody there to answer them.
 

She felt staff were unsympathetic during the termination at 23 weeks. Her memories of the baby she wanted and loved were affected by how staff behaved.

You mentioned earlier about the difference between your experiences of miscarriage?

Yeah, it was totally different, totally different. If I'd have been treated the way I was at the time I had my miscarriage to the time - it was, it's like night and day, completely different. Everybody's much more caring, you know, “Are you all right? Is there anything I can do? Can I help you?” you know. But nobody even wants to say hello to you when you're having a termination.

Why do you think people reacted so differently?

I suppose it's easier for them to cope with it. And I also think as well that people are judgemental, and they just assume, because it has the label of termination, that you don't want to have the baby, and that you don't want it. They just assume you're having an abortion, I suppose. That's very much the way that I felt, particularly in the delivery suite. The anaesthetist in particular was very offhand.

What did he say?

Well, you know, because obviously they, I suppose they paged him to come up and do an epidural. And you could really see him sort of thinking, you know - he really sort of had the attitude like, "Oh God, I'm coming to do an epidural for a termination?" You know, like I wasn't even having a baby.

I think, you know, that's the other thing, is your memories. It's sort of like when you have a child that's sort of, is growing up, you have memories. You know, you've got like birthdays and teachers - good and bad, and all the rest of it. And I think that all the memories of your, you know, the baby that you've lost is just such a tiny little snapshot. 

It's all so negative, and it's all the health care people that you had around you at the time are the memories that you have of your baby. And it's just very important the way that they behave. And that they understand that you are having a baby, and not getting rid of a problem.

Yeah, that's the thing they're all focusing on' how to make it an easy process in terms of getting rid of the pain, and all that sort of thing, put you in a nice room, completely ignoring the real issue - and that is that you're having a baby that's, that you're not going to take home, and that you're not ever going to do anything for, except getting rid of them. It's so awful. When you really love it.

Sometimes she wishes she had not made the decision to end the pregnancy so quickly, and has mixed feelings about whether she did the right thing.

I think my husband was quite happy with the speed of it all, because it meant, for him it was less emotional to do it all that way, but I would have just liked to have gone home and cried for three days and then come in and done it - to have sort of grieved, you know? Well, not grieved - to have come to, to have accepted it, you know? It was like being in a film, you know. You don't, you didn't really feel like it was happening to you.

I think before I lost my son, I think, you know, if I'd have got, I probably would - I know my husband would still react the same way now - but I probably would have been more black and white, as he is, whereas now I don't think I would be. I think I'd be much more - you know, sometimes I see people wheeling children around, who are disabled or whatever, you can get the big sort of like oversized prams, you know, for when they're sort of five or six.

And I just sort of think that I shouldn't have done what I did to my son. Then as [husband] said, he wouldn't have been like that. He would have been completely different to that. He wouldn't have communicated or anything.

And that feeling that you wish you hadn't done it, that's not one consistent feeling, is it?

No, I've just got a whole mix of feeling. You know, in my heart of hearts I know I did the right thing, but I really, really love him, and that from a selfish perspective I would have liked to have, you know, have had him, but I know it wouldn't have been, it would have been awful for him.
 

She considered not having any screening in her next pregnancy. Screening is valuable but sometimes raises more questions than it answers.

I think losing my son made all of the antenatal screening a lot less black and white. You know, I think - you know, had I not had problems and someone had come and said, 'Well, we think you ought to have an amniocentesis', I'd have gone, 'Yep'. And if they'd have said, 'Oh, it's Down's', I probably would have gone, "Oh okay, you know. Let's have a termination". 

But after losing [son] I think it's a lot less - you know, I really did think seriously about whether I wanted to have any tests at all. And yet with my husband, it was the opposite with him. He was even more wanting the tests, and wanting information, and wanting to know, and I think possibly more from a reassurance side of things, whereas I went the other way, and just sort of like, 'Well, I don't want to know if there's a problem.' Whereas he wanted the evidence to prove that there wasn't a problem, if you see what I mean. So I suppose different people have different reactions to it.

And do you feel it's made you feel differently about screening? How has it changed your feelings?

Well, I think you realise it's there for a reason, instead of just being one of the things you do as part of the routine of being pregnant, without really paying a lot of attention to it at all. I think it, I mean, I think screening is a good thing. The only problem with screening is it almost gives you more questions than answers, if there is a problem. So it helps you work out that there's a problem, but, you know, one small problem then becomes one massive problem, and there aren't any answers to that. 

And then suddenly it all comes back to you and I don't, I wasn't ready for that. You know, you just think that screening is going to give you a yes/ no, and you know, nothing can prepare you for the magnitude of the problem, and the fact that it isn't just a straightforward yes or no.