Interview AN39

Age at interview: 38

Brief Outline: Hypoplastic left heart suspected at 19-week scan, confirmed by cardiac scan. Couple decided to end the pregnancy. Chose amniocentesis in next pregnancy (baby born 2002).

Background: Children' 2 (aged 8 and 1), Occupation' Mother - Business Analyst, Father - Accountant, Marital status' Married.

Staff have to concentrate while doing scans, but some initial reassurance and a friendlier manner...

Yeah, I mean it's difficult, isn't it? I mean, I think even in the kind of tone of their voice. Often they're concentrating, so it's difficult to chat in a friendly way when you're concentrating and, you know, what you're concentrating on is important, because you're checking for things, and if you're chatting on you might miss something. 

So, well, I don't know, a bit of reassuring chat and perhaps a quick scan to say, 'Yeah, here's the baby. It's wriggling about. I've got some stuff to do now', I think, I tend to feel that that would be important, and a best way of doing it, so you get a little bit of initial reassurance that, 'Yeah, so far everything's OK, but I've got my job to do now and, you know, I'm going to need to concentrate on that.' 

And I don't know, sometimes just the tone of somebody's voice, if they could be a bit more friendly before they switch off to do their job it would be better I think.

Watching a TV programme in her most recent pregnancy made her decide to have amniocentesis to...

I think I'd thought in my mind that I might like amnio, just for, you know, to be more sure. And then I saw something on the TV in fact, where - I think it was about people who were having recurrent miscarriages, and there was some centre or clinic in London and there was a chap, a Greek doctor there and he was, he was helping a lady. 

I was watching this programme, because it's the sort of thing you become fixated on when you've had problems, and it was so fascinating, that he was helping a lady and he said, you know, 'I think you ought to have amnio.' And she couldn't decide whether to have it, because of course it carries its own risk of causing a miscarriage, which, you know, is always something you need to consider.  

And what crystallised it for me was he said to her, 'What would be worse for you? Having a miscarriage or having a Down's baby?' And she was able to make the decision and I just thought, 'Yes, that absolutely crystallises for me what I want to do, and I want to have the amnio because for me it would be worse to have a Down's baby than it would to be, to have a miscarriage.'  

And my husband, I said to him, 'I think we ought to have amnio,' and he was like, 'Oh, I'm not sure,' and I said, and I explained that I'd seen this programme and how I'd come to my decision, and you know, that was how I'd viewed it, and he said, 'Oh yes, it's obvious, isn't it?' And he immediately, when I explained why I'd made that decision, and you know - because obviously it was our decision, not my decision, but I, that was my personal viewpoint, I suppose, my approach to amnio - and when I explained it to him, he agreed instantly.

It helped to try to relax during the amniocentesis in her most recent pregnancy, and it did not...

I was absolutely determined that I was going to be relaxed, because I was convinced that it was going to hurt if you were not relaxed. So I was going in with the view that, 'OK, I've made the decision to have this, so, you know, I'm going to be relaxed, and we're going to have it, and it's going to be fine.' 

I know I think the midwife had said to me, 'It depends who does it,' she said. 'Sometimes they give you a local anaesthetic and sometimes they don't.' And she reckoned that if it was a lady doctor, who could appreciate what it might be like, you'd get an anaesthetic. And if it was a man you wouldn't. 

Anyway I had a lady doctor, and they were, again it was great because you went in and she explained again, and you signed a consent and everything. And we also were very clear we did not want to know the sex of the baby. So that was written all over the notes at that point as well. And then there was, I think there were three people in there with us. 

There was one lady who was actually going to do it, and then a kind of assistant lady, and then there was a sort of nurse that just kind of kept by my head and sort of was there for us, and not really helping in any way, apart from helping us. So it was very reassuring, because they were telling you what they were doing.  

And they spent a long time scanning to see where the baby was in me, and try and decide the right place to go in. And the baby, you know, typically was wriggling about all over the place like they do. So I mean, again, that's reassuring, because you get another scan and you can see your baby's OK. And they did give me a local anaesthetic, which was OK - because often that's the worst bit about something, I think, having the anaesthetic. 

And then I was relaxed and I breathed deeply and did all the things they said, and it didn't hurt me in the least. So I was very pleased about that result really, because I'd felt that I'd gone in with the view that, 'I'm going to be relaxed, and it's not going to hurt me', and it didn't. It was fine. And they were quite reassuring afterwards, because obviously then you're like, 'I've had it, I've had it, you know. Now what's going to happen?' 

And they immediately then scanned again and said, 'Look, here's the baby. You can see it's OK,' and, you know, whatever. So they tried to reassure me afterwards straight away by just putting the scanner on the baby and saying, 'Look, there's the baby's heart beating, It's fine, it's moving,' you know. 'We haven't hurt it' sort of thing.

She had a fetal heart scan straight after the 20-week scan in her fourth pregnancy, and staff...

Well, we had the scan and you could see on the screen, because she had the screen so we could see as well. Because I know some scanning ladies don't let you see until they've had a look themselves. But the screen was facing us so we could see, and I kept seeing that usually they go all round and look everywhere on the baby and then she kept going back to the heart. 

And although you could see the heart beating, so we knew, I knew the baby was alive, which again before I'd seen a baby that wasn't alive, you know, inside me being scanned, so this time I thought yes, the baby's alive, but she kept going back to the heart. So immediately you do start to think, 'What's going on?  What's happening? You know, why does she keep looking?'  

And after, I don't know, a few minutes, but it seemed that she'd kept, you know, we'd detected that there was some cause for concern, she said, 'I'm,' you know, explained I think very briefly that she'd seen a problem with the heart and that she wanted us to see somebody else who could scan, who knew more than she did really. 

So we were extremely lucky actually, having read about other people's experiences, that we managed to get to see somebody the same day. I think I had an appointment straight afterwards, some sort of antenatal appointment, anyway. So we went down and had the antenatal appointment as planned and he'd been told and he said, 'Yes, don't worry, we're going to get you in with a fetal cardiologist,' or somebody, who happened to be at the hospital that day, so we were, you know, again extremely lucky not to have to wait, really. 

And within half an hour we were in the scanning room where they had a, I don't know, a better scanner, or a detailed one or something. And they explained very well what they were going to do, and you know, scanned straight away and found out what the problem was, and were able to able to explain it to us, which was, you know, saved a lot of anxiety if we'd had to wait, you know, up to a week, which I think some people do.

And what did they tell you at the cardiac scan? What were they able to see?

Well, they said it's something called a hypoplastic left heart, which I'd never heard of before. There was a, I think there was a heart chap and there was a sort of, a fetal medicine consultant as well. And I think they were both there, and they explained that they would have to scan the baby all over, all again, not just the heart. 

So they said it, you know, 'It will take fifteen minutes and we will have to look at everything in detail again, to get a picture in total of what we think the situation is.' And then he was very good, he sat down and drew diagrams for us, and explained what wasn't formed and what was formed and what was wrong. 

And they also, I think they detected something in the head which I think can be an indication of Down's or something, and I think Down's babies have more, are more likely to have heart defects, so they were explaining about that possibility as well.

So, you know, they were very good, in that we had instant information and answering all our quest-, you know, any questions we had and whatever, which obviously we were pretty stunned, so you don't tend to think of all the questions at the time. 

And then they made an appointment for us to come back the next day, so we'd had a chance to go home, think about it, take in the information and then go back the next day to sort of talk again. Because obviously you think of lots of things

The hospital was sensitive in the way it gave her information about the baby's heart condition...

We didn't go on the Internet. I think from memory that one of the nurses there had actually said, 'If I were you I wouldn't go on the Internet. Just take in what we've told you today.' I don't, I can't remember if they gave us anything written down or leaflets of anything, but I think they, she advised not to go on the internet, because I think you can do more harm than good, I think, to go away and scare yourself silly, really. 'Just go home and think about it.' 

And then they didn't talk, because I think, I remember almost immediately thinking - because they explained about the operations and things the first day that would be necessary for the baby if we were going to continue - but they didn't talk anything about not continuing. And I know I'd thought immediately, 'Does everybody continue? You know, is there a choice of not continuing, and what happens?'  

But they didn't talk anything about that on the first day. And the next day, obviously we'd talked when we got home - I can't remember whether we'd even talked about not continuing that day. I think we were pretty stunned. We were both determined I think to - we didn't know what to do with ourselves, so we actually both went back to work and just carried on like sort of, I don't know, like, 'I'll keep my mind off of thinking about it, because I'm going to go back to work and I'm going to pretend it hasn't happened, and I'm, you know, going to carry on' sort of thing, so. 

The next day they did talk about options, and said, you know, 'Termination is an option, or carrying on is an option', and you know, I suppose they sort of introduced that topic, because some people might not want to terminate and might be very, very against even mentioning it.  

So they were very sensitive about the way they introduced that, to, you know, and we sort of said, 'Well, actually that is something that we had thought of.' So we must have talked about it, because I remember saying, 'Yes, we'd thought about that, and we were interested to know more about what that would involve.' So they explained more about that, whereas the day before they'd concentrated more about the kind of, the survival aspects, I suppose, so.

Just the facts about the condition?

Yes.

They were worried about what life would be like for a child with a severe heart condition, and...

I think, I just remember concentrating on how that would affect our family life I think. We had a daughter already, who was at school. I just remember thinking you know, here's a, we're going to have, if we go ahead with this we're going to have a baby who's going to have two pretty critical operations within the first year of its life. 

Then, you know, then it's going to be sort of more of less OK. I think they'd need a third one before they were 5 or something, from memory. Obviously this is not going to be sort of an entirely normal healthy baby, because it's going to be, I think, a blue baby or something until they've got at least the first couple of operations underway.  

Then we also found out, they sort of said, 'Well, the heart actually' - because they sort of re-plumb the heart to get round the problem, the heart basically gets worn out by the time the baby, the person becomes middle-aged. So we then thought, you know, your, I don't know, to know that you've got this clock ticking really inside you for this person as they grow up, you know, we just felt that, I don't know. 

I suppose if we'd known that we could have, things could have been done so that baby could have then grown up to be, have a normal life without other risks of heart wearing out and other sorts of things, you know, the having to still get through the big operations, it would have been something different. And we just thought, 'Well, you know, here's our daughter. We owe her our attention as well. We've already committed to her by having her.' You know, we just felt that that wasn't the right decision for us.

She wondered if staff might be critical of her decision to end the pregnancy, but found them...

The fetal medicine, sort of, the people, the support team in fetal medicine were really good. There was this wonderful lady who was, I can't remember, just a kind of supportive sort of role - I mean, she was a nurse and, you know, had a lot of medical knowledge - but she was so supportive, sort of emotionally she was really like, 'I'm there for you.' 

And the midwife who looked after us throughout the termination process. Again, you're sort of, you're not sure if you're going to come up against sort of resistance from medical people that, 'Oh, they've made the wrong decision, you know. You should be pro-life under any circumstance', you know. So again, you sort of go into the hospital not knowing what you're going to face, really, I suppose, there.

And you know, again, you're worried about meeting other people who might be pregnant and in the hospital and might have known what's going on behind your closed door and etcetera, etcetera. But we didn't come across any of that really. It was, they were great. So again they were, it was support all round. 

I don't remember any bad experience of that whole bad experience, if you see what I mean. It's just, it was as good as it, as good as such an awful experience can be, I think. I think having read about other people's experiences, we certainly, you know, were very well supported.

You can never predict how you would react if you found out something was wrong with your baby.

What would you say to other parents thinking about whether or not to have screening?

Well, I suppose you have to do the same as we did, and weigh up the risks, and what is the worst outcome for you. For us it would be worse if we'd had a Down's baby, so we decided that we'd rather take the risk of amnio than take the risk of not knowing and possibly having a Down's baby. But each person has to weigh up their own worst case scenario, I think, and use that as a guide.

Would you recommend to people that they should think about what their attitude would be if they're told that their baby has something wrong before they get to that point, or do you think it's not something you can anticipate what your reactions will be?

You can anticipate, but you may, you have to be very prepared to change your mind, I think, because you never know how you're going to react in such a situation as that, until it really happens. Hypothetical situations are all very well, but it's, you know, you can never envisage exactly how you're going to react. When that happened to us, I don't know, we'd never had a, neither of us had had a parent die or any other sort of close death in the family like that. We didn't, that was like truly the worst thing that had ever happened to us.  

And I didn't have any idea how I was going to cope with such a disaster. You know, we just didn't know how we were going to deal with that and how we were going to react to it. And you can never anticipate, really, how you cope until you're in that situation. And then we were actually amazed at, at how well we did cope. I couldn't believe that we'd actually made it through, and survived such a thing.  

When we went back for some follow up appointment X number of weeks later, and we sort of sat in the doctor's office and said, 'Well, here we are. We've, you know, we've got this far. We can't believe we've actually done it, and such an awful thing has happened, and we've turned the corner, and you know, we can look forward, sort of thing.'