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Antenatal Screening

People's stories

Baby's condition detected after birth

Interview AN03

Interview AN03

Age at Interview: 32
Background: Children: three children, aged 8, 5 and 3 at time of interview, Occupation: Mother - housewife, Father (age 38 at interview) - bus driver, Marital status: Separated.

Brief outline:Daughter born November 2000 with congenital heart problems not detected by antenatal screening, diagnosed when the baby was 10 weeks old. Corrective surgery at 11 months and 2 years.

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The mother thought something was wrong with her baby after birth, but everyone reassured her till the baby developed pneumonia when she was several weeks old.
Print 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, there's 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, she'd wake up and be hungry again. And I was thinking she's 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, “We've 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: She'd 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. She'd 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, something's 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] straight away, and it was 85 and they said in a normal person it's supposed to be 100, so of course they thought yeah, like, something's wrong. They put her on oxygen straight away, which she screamed her head off, you know, with these tubes… Father: But then they blamed the upper - when they found out it was upper lobe pneumonia, that's what they put the SATS down to. They said, “Well, it's low because she's got a, her lungs are partially blocked with fluid.”

It was terrifying to be referred to a specialist hospital as an emergency, but also a relief to have a clear diagnosis of their baby's heart problems.
Print 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, “She's 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. Mother: Yeah. Father: All the weight from the one moment of us not knowing whether she was going to die there and then, that was it, there and then. Mother: That was it. They did-- Father: That was good. Mother: The echo up at [specialist hospital] and it was found that she had pulmonary atresia, ventricular septal defect with an overriding aorta, which are, some like major, major problems.

They were readmitted to hospital two weeks later and felt helpless watching their baby struggle for life. (She has since been operated on successfully).
Print Mother: But yeah, that first time we was in hospital two weeks. They discharged us, you know. They said they'd do follow-up at clinics, she would need, I don't know, one doctor said five operations; they'd do like a few smaller ones. Father: In stages. Mother: And then one major big by-pass surgery, and they sent us home. And I'll be honest, in the - when I was home all I kept thinking was, “Oh, she'll be all right for the little ones, it's the big one that's, that I'm not looking forward to”. Father: Yeah, that was what was worrying us - the big one, the big one's coming. Mother: But then like I said, I was home 13 days and I knew again - gut feeling - that something was wrong. The Home Care team was down teaching me CPR and I said, I said, “Look, is she breathing OK to you?” and she said, “Yes, she's fine”. Father: But she wasn't - because it was the way her, it was the way her chest was moving, it wasn't right. It wasn't like... Mother: Yeah, she just... Father: It wasn't what it looked like if you've got a normal kid breathe, it used to sort of collapse, her whole chest would collapse, then puff up again, collapse. And it was like she was, as if - you know when you've been running for a long time Mother: Yeah, just… Father: And you're like, you're really trying to get your breath, she was like that all the time. But it wasn't bothering her, she wasn't fazed by it. Mother: No, no, she was fine. Father: She wasn't worried at all. She was just, it was just the normal way she was. But it worried us keep seeing it, like, “It's not right though.” Mother: That's it. But then like I said, I took her to the hospital the Friday. They said, “It's a cold, you're over-reacting because you know that she's a heart child now”. Lo and behold, took her back up there Saturday, she was admitted, Sunday diagnosed with bronchiolitis and the Monday she was dying. Same doctor, [name], just, you know, it's really weird how it happened. Father: In a little box, and that was also bad, because we couldn't touch her. Mother: Yeah, the oxygen box, oxygen tent over her. Father: So it was right over her, so you couldn't hold her hand. Well, you could hold her hand, you could hold her, she could hold your finger. Mother: Yeah, yeah. Father: But you couldn't… I don't know, you couldn't grab her. Mother: Just, no. It was horrible, horrible, because I did pick her up and she had a spell and her oxygen level dropped so low, you know. It was best... Father: Straight back in the box Mother: Best to leave her there. Father: And that was awful because you're so helpless. All you want to do is pick her up, say, “Come here, princess”, and just give her a big cuddle, a kiss and just hold her, and sort of like get everything around to go away. And you can't. All you can do is hold her, all she can do is just hold your finger. And you, it's just awful, your whole body becomes your finger. That's it, you're all your finger. Awful feeling. Mother: But like I said, yeah, [name of doctor] once again come along with the bad news, “Look, you know, this,” - he did a blood test, an hour later repeated the blood test and she was dying. Father: And I'd just gone to work.. Mother: And of course, you know, you could tell by his face. I'll be honest, he is such a good doctor. Father: He was brilliant. Mother: He was really good. Father: Told you the truth, all the time.

One doctor at the specialist hospital told them their daughter's heart condition should have been detected at the 20-week scan.
Print Mother: Yeah. I'll be honest, he had a pop at me. He said, you know, “Who the hell done your 20-week scan?” Father: Yeah. Mother: And I'm, like, “Oooh, you know”. And he's like, “Well, it's not this hospital, is it?” and I said, “No, no”. I said, like, “The hospital that I had her”. And then he said, “Oh, I knew it wasn't this hospital. Why wasn't this picked up?” Father: He was so annoyed. Mother: And I'm, like, “Oh”, and I said, you know. Father: He said, “It's so obvious.” Mother: Yeah. Father: “This is so obvious, this should have been picked up”. And we're like, “Well, we didn't know.” Mother: And I said, “I didn't know.” Father: “We just did a normal baby scan, we just… we never knew”. And he said, “This is so obvious, it should have been picked up”. Mother: That it should have been picked up. Because this is it. Father: And then that put the guilt on us, maybe we should have seen it. That was bad enough. Mother: Yeah. But then that's what I said, “What caused this?” I said, “Did stress cause this?” Father: And “Did this cause this”, because at the time we weren't together. Mother: “Did smoking cause this?” because I'll be honest, yeah, I smoked during my pregnancy. But he said, “No”. They did the… Father: “It's not stress, it's not smoking, it's not anything like that, this just happens.” Mother: “It's one of, just one of those things.” Father: “This happens”.

They would like to have their scan pictures reviewed by a specialist to know whether their daughter's heart condition could have been detected before birth.
Print Mother: Yeah it's just, to be honest, if I could I would like to go back to get the video, and the pictures and the information, take it up to [specialist] Hospital, and say like to the doctor up there, “You tell me, or show me, in their exam where her problems are.” Father: Yeah, scan photographs, everything. Mother: If they say they couldn't, then fair enough, the woman had done her job. But if they pointed it out, then I'd go doo-lally, because I should have known. I should have known. Father: Yeah, first scan, first thing. Mother: But... Father: I've still got, I've still got her scan, her scan photograph... Mother: Yeah, we've still got pictures. Father: In my wallet, I carry it around every day. Mother: But it's... Father: And it was at that, it was in that scan photograph that I've got, “This is your normal baby, this is, she looks fine, there's no problem here, yeah, this is this, this is that.” Mother: But this is it, you know. At her first Christmas, as far as we were concerned she was fine, she was... Father: Fine. Mother: She was normal. And to be told that she might not make it to the next Christmas... Father: Yeah, Christ. Mother: Is devastating, you know. Father: Yeah.

They were glad they did not know the diagnosis before birth, as it would have made them worry throughout pregnancy and perhaps created pressure to have a termination.
Print 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 she'd 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 there's 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: There's 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 went through my pregnancy and the labour, and the way she's grown up, knowing - in the beginning not knowing, but trusting my instinct, trusting my feelings, getting through each stage and learning about the next stage, and the operations. And it was not planned, but it was all sort of happened for a reason. But, you know, I can - oh, I can just imagine, you know, being pregnant and having the not knowing, would - oh, it would have devastated me. Father: Yeah, knowing she had a heart condition, but not knowing how it would turn out. That would have been awful. Mother: Yeah, yeah, the worrying. You know, people and doctors and that can reassure you, but it's still - it is, it's the not knowing, at the end of the day, that's what I think.

It helped to meet other parents of children with heart problems in hospital. Their shared experience brought them together.
Print 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 people's 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 everyone's 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 there's people from all different walks of life, all different races. That's it, different ages different backgrounds and families. Father: Backgrounds, different people. These people are really upper class posh people. Mother: And that's it, you start talking to people Father: And you all just, you just, you build bridges, you just combine, everyone just sort of... Mother: Yeah, because you have the one thing in common. Father: Yeah. Mother: You have a heart child. Father: A heart child. Yeah, it's like another little world? Father: It overcomes boundaries, everything, yeah. Mother: Another little world, yeah. It's, my neighbour next door but two, her daughter's just had a child... Father: Yeah, she's got a heart condition. Mother: Whose got a heart condition. And one of the first things she did was knock on my door. And I talked to her, you know, she was worried, I showed her the photos. Father: Yeah, it's made her feel much better. Mother: Much better. Yeah, she just... Father: Knowing that there's someone else right next door to her. You know, it's not, she's not got to sort of like go a hundred miles to find out anything. Mother: To meet someone. Father: It's actually next door. Mother: It's next door. Father: It's somebody else who's got the same sort of condition, it's actually the same thing. So, as I say, it just, the world, your whole world just becomes, it shrinks overnight, and you find that people right next door to you have got it. Like I say, a person I work with, you know, had open heart surgery in 1969, and he's fine. Mother: Well, that's it. Advances nowadays, you know - they said to us, “Go back ten, fifteen years ago, there'd be nothing." Father: After what she had we couldn't have saved her. Mother: Couldn't have saved her. Father: Because she was that bad Mother: But now they can. Father: But look at it now, yeah.

They were telephoned about their daughter's heart operation when they were going out for the evening. Parents need time to relax and enjoy themselves.
Print 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: “She's 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, anyone's 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 there's... 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. Father: Yeah, you've still got to take care of yourself. You've still got to take care of yourself, otherwise you'll just collapse. Mother: Yeah. Father: You've got to take care of yourself. You can't forget that you are still, at the end of the day, you're a parent, a human being. Mother: A parent. A person. Father: You're a person, yeah. You've actually got needs. So you can't forget yourself, because otherwise it just - you can't throw it all onto your child, even though you want to. You've still got to give time for yourself. Mother: And the other children. Father: And the other kids yeah.

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