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Parents of children with congenital heart disease

Interview CH21

Age at interview: 12
Brief Outline: Their daughter was diagnosed with Total Anomalous Pulmonary Venous Circulation. She had open heart surgery at 5 months old. Current medication: none.
Background: Diagnosed at 4 months. Parents' marital status: married. Occupation: Mother-Social Worker, Father-Civil Servant. Other children: one older child. The family do not live close to a specialist hospital.

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Her concerns about her baby's symptoms were not taken seriously by the health visitor or her GP...

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Her concerns about her baby's symptoms were not taken seriously by the health visitor or her GP...

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And it all came to a head when she was four and a half months, her sister had croup regularly so we were used to croup attacks. If ever you do a website on croup, I can give you masses of information on that. And it was sort of September time and she, my elder girl had this croup attack in the night and the little one, the baby, started with a cold so she was all runny nosed and very snuffly and not right at all. And so my husband was upstairs with the croup (laughs) and I was downstairs with the snuffles. And she was all right if I sat her up and I slept sort of on the sofa, with her upright, she was always comfy in that position, always more comfortable in that position. The next morning you know I thought, 'oh god', you know 'I'll haul her down to the surgery'.

Managed to get an appointment, didn't see our usual GP and saw a female doctor who hadn't, who I had not seen before, said I said, 'You know, here we are with croup and a cold' And she said, 'Well there's nothing we can do with croup'. And I said 'I know that, but can you know, just check her throat because she', anyway that's another story, and she said, 'Well I'll look at the baby first' and she took her and she said 'How long has she been like this?' 'What do you mean, she's got a cold, you know the cold sort of started a couple of days ago but she's getting really snuffly'. 'No, how long has she been cyanosed?' which is blueness and I said, 'Oh she's been like this ever since she was born'. And her feet, you know, the soles of her feet were always bluish, but babies' feet you know, because of the, the thinned skin, that you know, can see veins. I can remember saying, 'Do you think her feet should be this blue, you know?'

And that was the start of it. [Pause] She said, 'Well she's definitely cyanosed' and, and she sounded her chest and I could see the alarms bell ringing for her and she said, 'Oh I think she's got, I think she called it bronchilosis, bronchilosis which is like a bronchitis sort of thing that babies get. And she said, you know, 'I want her to go hospital now'. And so rang my husband and he sort, sort of rolled down because he was sort of thinking it was, like one of my elder daughter's croupy days, nothing too much, nothing too alarming. 

And we got to the hospital and I was sort of thinking, 'Well how am I going to manage this and I've got to stop in with the baby then my husband'll have to take time off work' or 'No, I can get my mum down' 'cos my mum's a staunch woman, you know, she'll come. 'And we'll probably going to be in about 48 hours, perhaps if that, you know, probably give her some antibiotics'

She was seen by the first doctor, who sort of listened and listened and listened and started asking questions about her feeding and how she was and things. And none of them said anything to me, 'We think this is or whatever' but you know it was quite, it was obviously not this chest infection, this bronchilosis. And there was the first one and then there was another consultant and then there was finally, this lovely chap, came, much older and very, very patient with [our daughter], who was quite fed up at that time but he was very, he was very gentle with her and he said, he examined her and he said 'Well there's no doubt in my mind that her liver's enlarged'. And in that heartbeat I thought, 'Oh my God' you know. 'Does he think, what have I done wrong? Immediate guilt, that, that I'd done something wrong and then, did they think that I'd hurt her, dropped her or, it was some sort of' It was this awful panic.  

And then he said, 'I think, I think that her heart is, she's in heart failure'.

 

Describes feeling relief at diagnosis after 5 months of believing something was wrong with her...

Describes feeling relief at diagnosis after 5 months of believing something was wrong with her...

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And then he said you know, 'I think, I think that her heart is, she's in heart failure'. Which was something I could understand.  [Pause] And then it was just waiting while they sorted out where she was going to go and what was going to happen and my husband and I were sort of absolutely 'Oh, oh,' you know, this is 'What, where, why, what and how?'

And then we, then it was transferring to the other hospital in an ambulance and she, she had some sort of little, little sort of oxygen tent and it was so bizarre from going to, you know, that morning when I'm walking around carrying her, making toast and peanut butter for her sister, you know, sort of with your baby and sort of thinking 'Oh, you know, another load of nappies to do' to being, you know, with your baby sort of being given oxygen because there's something really, really wrong with her.  And it, it was bizarre, bizarre. I kept thinking 'This isn't really happening'.

Although in some ways, in some ways it was easier because, you know, God knows I didn't want to be proved right like that, but there was something the matter with my baby. [Pause] And you know it was, it, it, and it was sort of release and relief to think that. 
 
 

Describes how she talked to her daughter in stages about her heart condition.

Describes how she talked to her daughter in stages about her heart condition.

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I don't' know, it's like, I don't think there was ever, was never a sit down and I'm going to tell you. I think partly because check-ups, we're, you know, going to the hospital for a check-up, I suppose as she started to grow and develop her memory, she would remember doing it. We had photographs. We're a great family for photograph albums and kids, you know, the kids look, love looking through them. And we've got photographs of her in hospital, my brother came down to see her, or up to see her and took some photos, so we've got those. And she was christened in hospital, when she was in hospital. I just sort of hedged my bets as it were. You know and they're sort of family photos that come out. 

And I know she, when she started school and they'd get changed for PE somebody had asked her, one of her little friends had asked her and she said, she came home, she said, 'Tsk, they asked what that was? And I said it's where a tiger had clawed me, but it isn't is it'. And I said 'No it isn't, you know what it's from, don't you?' And she said, 'yes, my heart surgery'. And from time to time, you know, we've talked about it. I mean the thing is children's understanding, you can't give them a whole piece of it, they've got to have a framework that bits stick to. Sometimes you tell them bits and it falls through but sometimes it sticks and then gradually they built up a whole picture. 
 

Although it was awful at the time, and occasionally she has had worries about her daughters...

Although it was awful at the time, and occasionally she has had worries about her daughters...

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Now, that's something that, that perhaps I could say to parents that no matter how awful it is now time does put it in perspective. We, we were fortunate in that her surgery was done and dusted and we have we've walked away from it all but for blips and check ups. You know, I'm sure there are parents who would long for that but time heals. There's nothing like a platitude is there?

And both my husband and I, I think we supported each other in that she's mended, she's sorted, it's done, it's dusted, and I think that's the only way to be isn't it, perhaps because it was. You can't wait, I worry occasionally, once in a blue moon. It happens, when there was this article about  fertility and problems and with children who'd had soya milk, I thought, 'Oh god', you know, so that sort of kicks it up and puts it into focus again. I wonder what it would be like for her having children, you know if that's going to be a problem. We were told that that the stitches, there can be some narrowing of the vessel, the blood vessels where the stitch, stitches are. And I was slightly anxious occasionally. When sort of around nine, ten, eleven, I suppose, when she was growing quite quickly, if she ever got a bug, then I think, 'Oh you know, is she all right?' I think that you think it's just another thing. So I suppose it's just another ornament on the shelf, you know it's there but you don't really, it's part and parcel of her, really. But don't worry about it over much at all, just let her, you know, carry on regardless.

 

Describes the problems she had with feeding her baby and recalls that the health visitors didn't...

Describes the problems she had with feeding her baby and recalls that the health visitors didn't...

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And I spent a small fortune on different sorts of teats and sterilising needles and making holes bigger and doing different systems and I'm sure that the chemist thought I was barking. And I think by this time I probably was a bit post-natal, absolutely obsessed with her gaining weight and her feeding and what was happening. And finally the Health Visitor said 'put her on a bottle, this is just you', and I felt such a failure, I felt such a failure.

So we did. We got formula milk and we started giving her bottles. Which was a nightmare because she wasn't really interested. And feeds would take, feeds with a bottle would take sort of 3/4 of an hour or an hour, an hour and but she did seem to thrive a little bit more because at this time she was practically off the percentile chart. She wasn't quite off it but she was. And various Health Visitors would, they would weigh her and they'd measure her head and because there was some growth then that was OK. And, this is with hindsight, everybody looked at their little part of what they should be doing and if there was a tick, if they'd checked it and it was OK, nothing wrong there, then that was it. Nobody ever sort of referred on. And also everybody looked at me, they didn't actually look at my baby. They didn't really consider her. And they didn't refer on because they looked at her and yes there was some increase in weight, yes there was some, you know her head, head was obviously growing so therefore she was growing a little bit and because she wasn't off the percentile, because she was just staggering along it, then I would get sort of repeated stories of 'Oh babies that they knew that all of a sudden just raced away. You think 'I don't want to know that'. This is me.

 

Explains that it was hard leaving her toddler at home when her baby was in hospital.

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Explains that it was hard leaving her toddler at home when her baby was in hospital.

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But once it was diagnosed and the surgeon said what was going to happen, how it was going to be done, it was a matter of waiting for the surgery in the hospital and then having surgery... and then sort of my parents rallied round and came down. My husband's parents looked after my elder girl for a while and then my parents took over and my husband's parents did sort of the last stint. And that was really hard, to leave my toddler, but I couldn't, I couldn't leave my baby because' and that was hard, that was really hard.

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