So looking back now, and thinking about being told everything was normal, and going for the scan antenatally and it was all fine, how do you think you would have reacted then if you’d been told that?

Mother’I would have been devastated, absolutely devastated. I’m, I think back now and I am so glad I didn’t know. I think I wouldn’t even have wanted to know. It’s, that’s only looking back now. You know, thinking about the labour, labour could have killed her, but it didn’t, you know. It was so fast it didn’t. And if I’d have known shed have been born that quick, I would have chose not to know. I didn’t, I wouldn’t want to know.

To be honest, if you take me back in time, not knowing what I know now, I would want to know if theres something wrong with my baby, so you can plan, you can get the advice, you know. The baby would have been born by caesarean. You can plan everything. But with what I know now, how things have developed, I’m glad I didn’t know, because, this is it, I enjoyed my pregnancy, I did.

You know, I went on holiday with my family and my children, we had a fantastic time. And I had, you know, not really any major worries. You have your normal worries, you know – who’s going to look after your kids when I have to go into labour? But, that’s it, you know, I enjoyed it, everything was fine, she was born fine, she was born a good colour. I don’t know what I would have done, I really don’t.

To be honest, I think the pressure I would have been under, you know, being a single parent with two other children, carrying a child with some major heart problems, I think the pressure would have been on me to have an abortion, would have been big. ‘How are you going to cope? What are you going to do? You’ve got two other children to think about. Who’s going to look after them when you go into hospital?’ The pressure would have been overwhelming. And, you know, it’s, I would have been in tears every day, every night.

Father’And the pressure from me for keeping her.

Mother’Yeah.

Father’Theres no way I would have wanted to, sort of…

You wouldn’t have considered it?

Father’No. Not at all.

Mother’What? Considered what?

Father’Abortion.

Mother’You wouldn’t have done?

Father’No, not at all. Like I said to you, she was meant to be born, she was supposed to be here.

Mother’But, if – no, if you think about it sensibly and the situation that I was in, I was a single parent with, with two children. I’ll be honest, you know, I do have a supportive family. But to go through that – and I’ll be honest, my heart goes out to every parent who has found out when they’re pregnant, because what they must be going through must be horrendous – not knowing. That’s the thing, the not knowing.

Father’Yeah.

Mother’You know, are they going to be born OK? Are they going to be alive? When’s their first operation? You know, I must admit, I

Mother’Echo [support group] members sometimes visit the ward, to see how you’re doing, how you’re getting on – to let people know about the organisation. And, like I said, the first time I met her, I was just in such shock.

This was when you were first admitted?

Mother’First admitted, when we first found out. I just didn’t want to know.

And so they come to the nurses on the ward and say, ‘Have you got any new patients?’

Mother’Oh, no, no. They just walk around.

Father’They just walk around.

Mother’They leave their most updated newsletters.

Father’On the ward, and you get contact numbers.

Mother’To be honest, I found that helpful, as well, I did.

Father’Yeah, it’s nice to read stories of other babies.

Mother’They’ve got other peoples stories in there which I thought was good. And then the second time with the bronchiolitis RSV [Respiratory Syncytial Virus], we saw [name] again, and I said, ‘Oh, like, are you recruiting?’, and she said, ‘Oh, no, my son’s just had his surgery. And I thought, ‘Oh, what have I said?’ But she invited us downstairs to see her son, to see what to expect, what we have to go through.

Father’It’s not only that. It’s, once you’ve had a child with a heart condition and you’re in hospital, and you’ve found out about the heart condition, it opens an absolute chapter.

Mother’Yeah.

Father’Because you just suddenly find out, ‘Oh yeah, well, I’ve got a heart condition. I’m having all this done and that’s done. And it’s just everyone around you. And you think, ‘Well, I’ve never heard of it before, and then suddenly everyones got it, and it becomes like a normal everyday situation.

Mother’Yeah. That’s it, you know, all.

Father’Heart condition. It’s not as serious as you suddenly…

Mother’Think it is.

Father’As you first perceive. When you first find out you’re like absolutely terrified, mortified, you just don’t want to know. And then suddenly it’s just like a cold.

Mother’That’s it, it’s – well, no, I wouldn’t say that.

Father’Yeah, but it is. I don’t mean like a, it just becomes an everyday thing. Lots of people have got it.

Mother’Yeah.

Father’Lots of people have had it.

Mother’That’s it. You’re sitting on this ward, and theres people from all different walks of life, all different races. That’s it, different ages different backgrounds and families.

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Mother’Yeah, this is it. Because I found out – I’ll be honest, I hadn’t gone out at all. The last time I went out was November, December 2000, dancing. I hadn’t been out. And the only night I thought, ‘No, I’m going out’ – I’m only going to bingo – I decide to go out, my mum’s agreed to babysit – because my mum, you know, went through her own worries, was worried in case anything happened. She agreed to babysit, we were going to bingo – five o’clock that night I got the phone call ‘Shes going in 17th October.

Father’Yeah.

Mother’I’m like, ‘Of all the nights to pick to phone me. But then again, I wanted to know as soon as possible, so I could plan with my other two girls.

Father’Did we go?

Mother’Yeah, we went.

Father’We did, didn’t we?

Mother’Yeah. It’s a good, good thing, bingo.

Father’Anything – yeah, anyones having a baby or you’ve got worries, go to bingo.

Mother’Because all you concentrate on…

Father’Is the numbers.

Mother’Is that number.

Father’All your worries just go out of your head, everything just goes. I mean, bingo – I mean, I would never have gone to bingo.

Mother’Yeah.

Father’But if you go, it’s just all you hear…

Mother’That’s it – you’re sitting there.

Father’Is the man calling the numbers out.

Mother’Calling the numbers.

Father’Everything in your brain just switches off.

Mother’Switches off.

Father’The whole lot. You just switch off.

Mother’Number 22 – ‘come on, 22.

Father’And you hear your numbers.

Mother’And that is, I know theres…

Father’And it’s such a great release.

Mother’Yeah, it is. It’s good to forget.

Father’Hark at me – a geezer, talking about going to bingo.

Mother’Yeah, but it is…

Father’It is…

Mother’I still think you need to get out, and relax and,just for that couple of hours.

Mother’Yeah, we was in, I stayed in for two days. On the second day she was feeding every hour and I thought, you know, ‘That’s not, that’s not right’, you know. I had, my middle child was only 5lb 12oz. She fed every two hours because she was so little. But she was bigger, she was 6lb 12oz but she was still feeding every two hours.

I did mention it to the nurse and she said, ‘Well, you’re breast-feeding, theres nothing I can do. And I thought, ‘Well, fair enough’, you know. It’s, but I just got on with it because, you know, I’ve had two children, you know. And the doctors checked her out when we was discharged and everything was fine. Brought her home.

Again the midwives come to visit her, everything was fine, she was still a perfect colour and it’s only because I had a feeling that there was something wrong. Never in a million years did I think it was as major as what it was.

Father’No.

Mother’I just knew something was wrong. She had her 8-week check. She got the all-clear but I kept, I took her to the doctors because of the crying and the feeding, you know, every two hours and it was just, I was so tired, waking up all the time, like, seeing to her and it’s, by the time, you know, I took her off my boob to lay her down, shed wake up and be hungry again. And I was thinking shes either a very spoilt child, or there is something wrong.

Father’Something wrong.

Mother’Backwards and forwards to the doctors, colic, cold, flu, in the end they said it was asthma.

Father’Yep.

Mother’They said, ‘Weve done everything we could do. If you’re not happy, I suggest you take her to the hospital two days later.

Father’Which you did.

Mother’Yeah. On the Thursday, that’s it, she was happy, she was smiling and I did, I felt paranoid.

Father’Shed play, everything. There was nothing wrong. She wasn’t even pink – she wasn’t even blue. She was pink. She was a normal, active baby, and you used to play with her and muck about. Shed laugh. I mean, there was nothing wrong at all. She was fine.

Mother’I did, I’ll be honest, I did feel paranoid, but I took her.

Father’Yeah, because everyone kept saying, ‘Oh, you’re, you’re overreacting, you’re this, you’re that.

Mother’But that’s it, they…

Father’And she said, ‘But I know, [partner]- look, somethings wrong, I know it is.

Mother’Yeah.

Father’So I said, ‘Well, if it’s wrong – hospital. Sod it. Sod ’em. Just go, let’s just find out. Go. And we went, that was it, just, we went.

Mother’And we went, yeah. That’s it. They did her SATS [saturation levels of oxygen in the blood] s

Mother’It happens quick, as well, you know. They was in a blue-light ambulance all the way to [specialist hospital], which is scary in itself. You know, I had to quickly pack my stuff, say goodbye to my mum and my other two children. You know, and my mum was just like, ‘Ah, what’s going on?’

Father’Plus being told, ‘They’ve got the facilities there

Mother’Yeah .

Father”to deal with her case. And then you think, ‘This is more serious than, you know, this is really serious, now, because you’re talking about facilities, you’re talking about going to a specialist place, just for hearts.

Mother’A specialist hospital, yeah.

Father”This is really, you know, this is really heavy. And it was just, that was really scary, really scary.

Mother’But we got there. And like I said, in the ambulance was the time when it started to sink in, thinking, ‘Oh, you know, what’s going on? Is, you know, is she going to die? Is she going to live? Is, do they need to operate?’ And it’s, until I got there and, like, saw one of the doctors, and then, like I said, it took the whole of my courage and my strength not to cry, not to be all, like, panicky panicky, just to ask the question, ‘Is she going to die?’ And then when he turned round and said, ‘Well, one day’

Father”Not yet.

Mother”but not yet’, and that’s what I needed to hear, like, ‘Not yet.

Father’Yeah, the truth.

Mother’You know, the truth to say, ‘Shes not going to just like drop down dead on me. They’ve got time to do something and operate.

Father’Because no-one could tell us, no-one could say to us, ‘Yeah, this is going to happen, that’s going to happen, we can’t. All they could say was, ‘Well, we can’t really tell, we can’t really tell. And that was the worst part of it, saying

Mother’Not knowing.

Father’You’re worried about your, is your new-born baby going to be OK, and people saying, ‘Well, we don’t really know. And you don’t know, because you’re the parents, you’ve got no…

Mother’Yeah, no control

Father’No knowledge or whatever. These people know because this is their job – and then saying, ‘We don’t know’, that was the worst part of it. And then this bloke just turning round and saying, ‘Well, not yet, but.

Mother”One day, but not yet.

Father”One day, but not yet.

Mother’Which is a bad enough answer.

Father’It took all that weight off of that one moment.

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