Interview AN04

Age at interview: 41

Brief Outline: Hypoplastic left heart diagnosed after scan and amniocentesis at 25 weeks in second pregnancy. Decided to continue with the pregnancy. Son is now 2.

Background: Children' 2 (ages 4 and 2), Occupation' Mother - teacher, Father - accountant, Marital status' Living with partner.

She went for a routine repeat anomaly scan at 24-5 weeks in her second pregnancy, not expecting...

Yeah, so they really couldn't see very much with the screening at all. Obviously they could tell there were, you know, he had 2 arms, 2 legs but they, every time they said, 'Well, if you want to come back we can try again, perhaps he'll have moved, perhaps we can see more, but it's really up to you.'  

And I can't remember whether they actually said in so many words, you know, 'You probably don't need to worry, because you've had one healthy child', but that was definitely the message I got. You know, maybe that was me sort of reading between the lines, but I felt no pressure from them to come back. So I was thinking, 'Umm, maybe I will, maybe I won't'. 

It got to the 21 or 22 week stage where they do the last scan and he was still in the breech position then, so again, they couldn't see his heart and said, 'It's up to you, if you want to you can come back one more time.' But by then I was 24, 25 weeks pregnant, we'd gone quite a long way now and I sat there, I had [daughter] with me who was, as I said, 13 months, whatever she was.  

I sat in the waiting room for 2 to 3 hours, I think I must have been the very last one to be called. And that was co-incidence. There was no reason at stage to suspect that anything was going to be wrong on this, you know. And I, at one point I got up to walk out and I said, 'Look, I'm really sorry, I've got another toddler here, I haven't brought endless supplies of bottles and things for her, you know. If it's not soon, I'm going to have to go.'  

And they were a bit grumpy and said, 'Well, we're very busy, we're coming as fast as we can.' And I said, 'Well, I understand, but I think I'm going to go.' And I got as far as walking out, I was halfway out the door and they called me back and said, 'Okay, you can go in now, you can go in now.' And so I went in, and that's when I found out.

She felt anxious when staff talked to each other and not to her, when they spotted the baby's...

The natural thing is for the professionals to talk to each other, rather than to you, isn't it? Because they want to confirm what they're seeing, they want to bounce ideas off each other and, you know, 'Is this right, is this what we think it is?' And da, da, da. 

So I'm very much conscious of lying down, and you're at a disadvantage because you're lying down anyway, and sort of 'What, what, what? You know, can I? I'm here. Can you tell me what you're seeing?' And they didn't want to, because they weren't even sure what they were seeing, so that was quite difficult. I've been in that sort of situation at other times since then, although not to that extent perhaps, where the conversation is going on over your head while you're there and you're not included in it.  

You're supposed to hear it but not interrupt and wait until they've finished deciding amongst themselves what they've decided and then ask, you know. That's never ideal. But on the whole I feel very lucky. The experiences we've had with the hospital have you know, on the whole been very good and I think the level of care there is very high and I feel lucky we're in that hospital.

They decided against termination, but had amniocentesis to check if the baby had a chromosomal...

So by the Monday we'd reached the decision. I think we still talked about it on the Sunday but really we knew that we were going to go ahead and so we went back on the Monday to [hospital], to the fetal medicine unit, and told them our decision, and that was fine.  

And then they offered us amniocentesis and said that there was a chance, although it seemed that the baby looked well in all other respects apart from the heart, and they suspected that it was only a heart defect, there was a chance of it being part of other syndromes and other complications. 

So, there and then I had to make the decision, did I want the amniocentesis or not before we decided to carry on and they said, 'You know, we'll get the result very quickly for you, we can probably phone you tomorrow or the day after,' I can't remember. And to be honest at that point I thought, 'Well if our baby's got a 50/50% chance of surviving anyway, I'm not so worried about the one in a thousand chance of negative side effects of the amniocentesis so, yes, why wouldn't I do it, you know?' And so we went ahead with that. And from that point we decided, that was when our decision was made.

I'm interested that you, you went ahead with the amniocentesis despite having already spent a weekend thinking, 'We're going to ahead with the pregnancy.'

Because I didn't know what these other syndromes, and it's also fear based, isn't it, really? I mean, they said 'There's all sorts of other things that, you know, could be, you know, we should check', and, you know, you just sort of think, 'Oh, my goodness, well what else,?'.

Before deciding to continue with the pregnancy, she made herself think through all her options,...

I missed out, I mean I should have mentioned to you that one of the things we talked about on the Friday, the day of the diagnosis, was, I made myself ask a sort of, you know, 'Okay, if I decide to go ahead with the termination, how does it happen? Because I need to know, you know, if I'm going to consider it. I don't think I want to do it but, you know, please tell me how it happens.' And I still can't talk about it now without getting really emotional about it.

Do you want to stop for a bit?

Ooh, gosh, it takes you by surprise sometimes. No I don't mind, it's all right. It takes me by surprise because of the strength of feeling remembering that day, it was such a traumatic day. Oh God, yeah, sorry. 

I asked one of the, I don't what, I don't know exactly what she was, I'm not quite sure what her position was, quite a senior person anyway, in the fetal medicine unit. And she was the one who was talking to me, very, very nice. 

They were all, they were all very nice people. I mean very, they all had very good manners, I mean, when they were giving these, this bad news. But she said, 'Okay, well, what would happen would be, you know, we would inject, put, you know, inject something into the baby's heart and it would stop. I said, 'Well, would that happen quite quickly, you know?' And she said, 'Yes, yes, it'd be very quick.'  

I said, well, that was actually a horrific idea to me, that's why I find it very upsetting still to talk about it. And she said 'The alternative would be palliative care; that you would give birth to the baby but then we wouldn't operate and he would naturally die.' 

So I said, 'Okay, well, how would that happen exactly?' And she said, 'Well, you know, the labour would be induced or you'd go into natural labour. You'd give birth on the labour ward with all the other mothers, you know, were perhaps having healthy babies and keeping their baby and then, you know, then we wouldn't intervene, and he would probably die and we'd try and keep him as comfortable as possible until he died.'  

And all these things were such awful prospects, you know. When you're pregnant you just want to nurture this child you're carrying and all your instincts are so, you know, protective, and all these things they're telling you, like 'Right, you can offer your child up like a lamb to the slaughter, I'm going to stick a needle in his heart and stop it, you know, or you can give birth and then watch him die or, you know.' All of them were just so horrendous, you know. 

And I made myself, that weekend, think about them, think, 'Yeah, but how do you weigh that up, how do you weigh up that horrible experience, you know, for the child against longer term suffering or, you know, quality of life or the fear the child might have of knowing that they've got a serious condition that might kill them?' 

And I really was trying to weigh that all up at the time, and that's what we didn't really have support with, to be honest. The actual medical side of things was great, I couldn't fault it. But how, as a, you know, as a human being you make those sorts of decisions, you know, 'Do I stick a needle in my baby's heart and kill him now? Do I give birth to him and then sort of hope that he doesn't die, have a heart attack and drop dead at the age of 5, you know? Or, if he survives it all, which is the best you hope for, how will he live with the burden of this knowledge of this terrible uncurable thing?  

Is it going to scare the life

The rest of pregnancy was focused on the baby's survival. She felt she could not take part in...

What was it like for the rest of pregnancy, having got to this point

Oh, foul.

'and having the worst news, how did you cope and how did you feel in those last fifteen weeks I suppose?

Very difficult, very, very difficult. An emotional roller-coaster, to use the clich'. You know, some days I felt I could cope, some days I felt I couldn't, and just used to cry and think, 'Why my baby?' which is a silly, useless question. There is no why. But you know, you still find yourself feeling like that. I did feel that I couldn't join all the normal things. 

As I say, I was actually pregnant in Hong Kong with my first child so I missed out on a lot of the pre-natal support groups and all that, and I actually had been, before the diagnosis, looking forward to being back in the UK whilst I was pregnant, joining some of those groups and actually perhaps making friends with other women who were pregnant at the same time, which I didn't do with my first child, because I was, you know, I was overseas. I had been expecting to do all that, and of course all that went out the window, because I didn't want to join. 

In fact I did contact the NCT [National Childbirth Trust] and asked what they suggested. Did they think that it was appropriate for me to come, or were there special sub-groups for people who were having children with medical problems or? And very much, 'Oh, no, well, that's something different. You know, I don't, I really think that you probably need to find out through the hospital, perhaps, another special, you know, group. No thank you', was the, sort of the response I got.

Was this a local NCT trainer?

Yeah, and 'Oh, you know, we wouldn't want to be giving advice, you're going to be in a very special situation and our information is inappropriate for you.' Again, I had, because of some complications with the first birth, I'd been quite ill after [daughter] was born, I needed blood transfusions and I had various complications, and I'd already, before this diagnosis happened I'd been a little bit nervous about the second birth, and I'd been thinking about getting - locally there's, there's an organisation that provides doulas, say, for example, to support you through the birth and I'd been considering various options, thinking, well, that might be nice to have someone with me.

And again, that was something else. They turned round and said, 'Oh, you know, this is a very different, this is sort of a different kettle of fish altogether, don't really feel comfortable, you know, being in a specialist hospital surrounded by, you know, emergency sort of, you know, staff. No thank you, don't think we'll be doing that any more.' 

So all the normal things or the nice things that happen, you know, when you're expecting, all seemed to end overnight, basically. And I very much felt that from that point on, the pregnancy and delivery became about the baby surviving. There was no consideration - now this sounds like a real sort of like 'No-one thought about me'. But it's true, you know, no-one considered my really part of the experience. 

You know, it wasn't about giving birth any more, it was about whipping [son] away, whipping the baby away and saving his life and being in the right place for that to happen. And all the medical jargon surrounding his condition. And actual considerations like, well, you know, 'What sort of pain relief do I want?' or anything, just sounded so minor or so sort of inconsequential from that point on, that considerations about the pregnancy

Finding out before birth that her son had a serious heart condition probably saved his life.

Are you glad that you had the diagnosis?

Oh goodness, yeah, oh absolutely. For all sorts of other reasons, apart from just my own sort of psychological preparation, knowing meant that it probably saved [son]'s life because the surgery was scheduled for the day after he was born, everything was in place.  

You don't want a child with [son]'s cardiac condition being born in a sort of a local hospital where no-one's expecting it and perhaps don't detect the signs, and it can go a few days unnoticed, and then by the time they get to the surgery they're already in an unstable position and perhaps dying, you know. And you just, they could, you could die very quickly with this condition if it wasn't operated on early. So yeah, definitely.

Meeting the oldest surviving child with hypoplastic left heart helped her imagine a future for...

And you talked about using the Internet to research what was happening in the States '

Yes, yeah.

' have you ever got involved in any of the support groups there, because there are a couple, aren't there?

Yeah. 

There are discussion boards and things, aren't there?

Yeah, yeah, we're in touch with a couple of individual families rather than support groups, because the situation is so different there. It's very hard to sort of compare the treatment, but we are in touch with a couple of individual families whose children are quite, in their teens now.  

I just very much wanted to know, I felt one thing, as I said to you before, we were robbed of a, the right to imagine his future and I really, it's very interesting for us to talk to families who've got older children and find out, you know, how they're coping and how perhaps psychologically they coped with it as well, you know.

I met one of the Left Heart Matters support group paid for a boy to come over from America, and his family, they paid for the trip for them to come and talk to us. And he's now, he's the oldest surviving child in America, he's 18, hasn't had a transplant yet. He's also like one of the first, the only survivor, I think, out of the first 73 children that were operated on at that time. 

But then the aftercare's changed, everything's changed since then, you can't sort of make comparisons. But for me it was so interesting to meet him and ask him how he had coped with it as a child, when he felt he needed to know more, you know, at what stage he needed to be told things and, and that was just, you know, a really worthwhile opportunity. 

And to have that vision of him at that age and to hang our hopes on that and think, 'Right, well, you know, my son could be like that. He could be one of the ones that gets to 18 without needing anything more than an aspirin occasionally, you know, and let's just think about that.' That was just so important. 

And I think even by going to the charity, I don't know that perhaps they, a lot of people are probably, as I said to you, sort of almost the way that I feel, reluctant to give you the nitty-gritty and the ins and outs of the day to day management of it. They're much more likely to say, 'Oh you know, yeah. It's, you know, it's been a bit difficult but we're okay now' or whatever, and you don't know.  

I mean, I had no idea what to expect. That first year was just, oh, incredibly difficult. We were in and out of hospital with, you know, [son] nearly died several times because the local hospital didn't detect things that were going wrong and you know, we had drug charts everywhere. I was sort of thinking, smiling at the other lady that you showed me with her feeding charts [see CH04 on the site on 'parents of children with congenital heart defects']. 

We had a similar thing, drug charts, feeding charts, so complicated. I couldn't leave the house without sterile water to mix his medicines up in and syringes and, you know, it was just so difficult that first year, and we were in and out of hospital a lot. We spent 4 months out of the first 6 in and out, in hospital, at various, you know, going in and out, in and out, in and out.  

And we were discharged quite quickly really, after 4 weeks, but lots of set-backs and other surgeries needed, and I just wasn't prepared for that, you know. N