Interview CH23

Brief Outline: Caitlan was diagnosed with Pulmonary Atresia, VSD and Dextro cardia. Treatment: closed heart surgery at 48 hrs old and open heart surgery at 11 months old. Further surgery planned when their daughter is older. Current medication: none.

Background: Age at interview 23 months. Diagnosed at 24 hours old. Parents' marital status: married. Occupation: Mother-Full time mum, Father-Internet Engineer. Other children: one older child. The family do not live close by a specialist hospital.

Mother couldn't bear to acknowledge there was something wrong with her baby, father felt...

Mother' Yeah, blocked her condition out rather than her, obviously. I was very very attached to my baby and having just gone through delivery you're very emotional anyway and you want everything to be healthy and happy and I was '

Father' Just denial really '

Mother' It's denial really that, yeah, I think it's, I just didn't want to know that there was something wrong with her, I just wanted somebody to tell me that she was going to be all, all better and that she was going to have the surgery tomorrow and when she came out that she'd be absolutely fine and healthy And that'll be the end of it. But they couldn't tell me that which is why I think I didn't ask any questions and they tried not to tell me too much because they '

Father'  Well they tried to tell you, and they then spoke to me and tried to get me to tell you in sort of a more informal way but I think its down to the individual anyway because you don't, you would have run a mile if one of the kids comes in with a cut finger never mind  surgery so. Some people, yeah, I view it quite logically and mechanically 'cos that's the way my mind works and I suppose men are less emotional on that side of it. So I could just see as, as something being repaired and at the end of it fixed and there she is and she's fixed.  So that '.

Mother' Mothers are a bit more emotional and it's, it's me that's, that's with her most of the time. And then just, I think it was, part of it was the unknown, we didn't really know what was going to happen.

Comment that records from earlier generations do not give any indication of what had caused...

Father' Well they do to the extent that you get to a stage when you realise that well it doesn't matter how much you worry about what, what if I'd done this instead, it, it's not going to change the situation you've got and you've just got to keep looking forward and try and give Caitlin the best, best life we can and you know make sure that anything she does or anything, if we found something that may have caused it then we've, we would make sure that information carried though with her. Other things that I suppose in our generation  you, our, our grandparents', parents' generation weren't as forthcoming about what, things that may have been genetic conditions, you know, like I know several of my grandmother's, my grandmother's children died very young but nobody recorded what, what it was. Well maybe it was something like that so I think now that things like this are recorded, three generations they can sort of go some way to stop it from happening. But you try not to dwell on it because you'd drive yourself mad and it's just look at what we've got and the fact that '

Mother' There is no answer, is there? [Father' Yeah]  And it's, and I don't think you can spend too long speculating on what you've done in the past but just really concentrate on the future and the future of her life and your family.

Their daily life was more home based before their daughter had her corrective surgery but now...

Mother' It's even going out for day trips, that was, we used to take her file, we had a file that we used to take everywhere with us, like a just in case if she needed anything so that we could have all your help, help line numbers and hospital numbers if you needed anything.

Father' But that was before the second operation.

Mother' Just a minor'

Father' Because we knew it was what was, she was high risk during that time so.

But now do you do that now?

Mother' No. No. Just take her anywhere. Don't do anything with her in '

Father' No, she'

So daily life now is quite normal?

Mother' Quite normal, I think in the beginning I was anticipating going back to work maybe part time which I'd put off because I didn't want to leave her and I wasn't happy about leaving her with anybody else. There were only one or two people that I ever left her with in between operations for short periods of time. But now she's had surgery we're quite happy leaving her and going out for days and just even sending her to grand parents and I think'

Father' Which we wouldn't do'

Mother' Which we wouldn't do'

Father'during the'

Mother' During the first year my mum and dad wouldn't, well it's not that they wouldn't look after her, they weren't confident to be looking after her by herself and she, since she's had surgery they've felt confident enough to have her and do sort of normal grandparent sort of things with, with the children.

So that first year in between surgeries, you didn't, you know, you didn't want to leave her with anybody. [Mother' Correct] What effect did that have on you as a couple, in terms of being able to go out?

Father' It didn't basically, not much

Mother' We didn't go out. I mean I think we weren't as bad as to say like we'd both stay in. And I used to say it, tell you to go out with things, with other people and we did go out separately or we'd go round to friends houses rather than go out sort of places and do things. And I think we had a lot more home focused life than we were used to. We wouldn't sort of pop down to the seaside for the day. Whereas we, we probably would of before. But we can, we can do things like that now.

Explain that their baby daughter doesn't get too upset by tests and examinations but it has...

Father' She's fine, she recognises people that we know. It's, it's quite a finite group of specialists actually that she sees and she recognises them all and smiles at, at the ones she likes and doesn't smile at the ones she doesn't like. It's, it's just, it's just a normal child again. She likes some people and she doesn't like others. Or she responds better to some people.

Mother' She remembers what, what some people have done to her.

Father' Yeah.

But when she's having tests now how is she?

Mother' It's not as easy because she's a bit more mobile. So when she used to have ECGs and she just used to lie there and all her echoes and she just used to lie and let them carry on with it. Now she's trying to help and pull leads off, pull wires off and it's when you have to have things done two or three times because she's pulled something off that she shouldn't do and she knows she's done it. But she's a bit of a cheeky madam.

Father' But she doesn't get too upset about it, which is good. She's got quite used to it, used to being sort of handled and ..

Mother' It's just been part of her life really. She's grown up knowing that she has to have things done and that she just responds to the situation as it arises. You know she has her, her grumpy days when she doesn't want to be touched.

Father' She's a surprisingly contented baby considering what's she's gone through.  

The staff were very good at explaining what was happening when their newborn baby was transferred...

Mother' I had the option to be discharged and transferred myself to the maternity unit which wasn't actually with the paediatric intensive care unit at the same hospital, it was like across the road. So we made the decision to get discharged and I came home and then we went down the next day. All the way through we could of, we stayed with her and we had the option to stay with her. But it was just, I think it was just the experience, it was late at night'

Father' And I had followed the ambulance down and then come back, had some sleep and then we both come down the next morning 'cos there wasn't really anything that we could do at that point.  

Mother' We were just really, really the unknown, we didn't know what was happening with her and what was going to happen and they'd said she was going to be operated on the next day from the information you got during the evening.  

Father' I mean, the surgical staff had actually come in to examine her because it was going to have to be very early the next morning and they were very, very good at explaining they were really busy trying to plan it but at the same time, they were explaining it to both the night I went down there with her. And the next morning, when we went back they actually came in and went through everything again in a bit more depth 'cos they'd done the plan for the operation by then. So, yeah we can't fault them. You hear lots of horror stories about hospitals but we really can't fault that one, you know, for what they did.

Mother' We also got a call didn't we, from paediatric nurse that was looking after her before we sort of, left to go down to see her, to explain she was looking after her and what they were doing with her and what they'd done with her like overnight. And basically what to expect obviously when, when we saw her because I don't think either of us really realised what would be attached to her. And when we got there she was attached to monitors and to tubes and tubes and wires everywhere.  

Recall that the calm atmosphere in intensive care before their baby was taken in to theatre for...

Mother' They were very good

Father' They were good there, it was, it was strange to say but it was quite relaxed in a certain way and unlike an adult intensive care where, I suppose there's a lot more activity and a lot more rushing around. Certainly with the children they seem to you know, take their time with more and take more time with them. So that it was it was good, we were impressed I'd say, to say the least.

Mother' They were very calm.  

It was calm?

Mother' It was very calm, very peaceful. It wasn't like I suppose a normal hospital ward where you've got people rushing around. They just all move very, very slowly and you can see even in an emergency, they all just walk normally. I just think it's nothing like, nothing like what you see on the telly programmes.  

Father' That's right. It was a case of, they did, you know, they obviously got to where they had to go very quickly, but it wasn't like a mad panic rush. It was all well structured and it, you know, you do feel better, when you see that rather than just people running about and screaming and shouting and that, so.

How did it make you feel better?

Father'  I think in, inside yourself when it is going on, you, there's a certain element of panic and if people are rushing around and screaming and shouting, that's only going to elevate your feelings of panic. Whereas if things are calm, you can at least logically look at it and say right, they're doing their job, there's a problem, an issue but they're dealing with it and they're dealing with it properly and they're not panicking so it makes you feel a bit better.

They took their six-year-old daughter to some appointments and check-ups so that she could see...

Mother'  I think [our elder daughter], she did come to a lot of appointments and check-ups because we felt the need, that she needed to be there, to see what was happening and rather than be explaining to her what was happening with her sister, we felt that if she saw what was happening like the ECGs and the check-ups, and it actually made her feel a bit more special 'cos when she went back to school, she sat and told the class, where she'd been so it was a bit of, they made a bit of fuss of her.

Father' And it also stopped her worrying about it because she could see'

Mother' What's happening

Father' When Caitlin went in just for an ECG or something that she wasn't being hurt. She wasn't, she was just getting a little test done and it wasn't upsetting her, 'cos that was always a big fear of the older one that her little sister wasn't going to come back or was going to get hurt or whatever, which is...

Mother' she was in pain or discomfort or'

Father' And it was one of the nurses said, well, one time why don't you bring her with you, 'cos we had expressed a concern, and they said, yeah bring, bring her down and let her see everything that goes on and we'll show her around. They were, they were really good.  

Describe being worried about minor illnesses when their child was first home from hospital.

Mother' I think it's everything at different stages. I think you, obviously you do have your good days when everything's quite positive and then we've both had some really bad days when everything's looked a bit dark, dark and a bit more doom and gloomy. I think some of the times when, you're not quite sure what's happening, I think if she's been there just looking at you and smiling and you think 'She's happy and she's coping really well'. It's just when she hasn't been well, I think you do get a bit more emotional. And I don't think anybody can, can tell you how you're going to be feeling at different points. I think it's like, it's almost like it changes from one minute to the next. That one day you can be absolutely totally happy and then someone can say 'Oh she's not looking very well' and you start to be a bit more anxious and realise that she's not'

Father' Well that's even if it's a normal childhood like cold or teething or whatever, you tend to take it a bit more seriously. And in her case it's not, it doesn't make any difference now. And we've been told that, that it doesn't matter how many times we're told that, you're still a bit more cautious and, over, you know, what going on with her.

Mother' Yeah, there's been times when she wasn't breathing very well when she had a cold and you're constantly sitting there watching her and you think 'Well no, she's fine, she's all right'. And then she'd sort of cough and you think 'Should I go and get that checked?' And then there were a lot of times when I phoned you to sort of say 'Listen to her breathing'.  

Father' And there are things like you just look at her and you think 'Has she gone a bit blue again?' And you, because of her surgical correction she can't, we know that, but it sometimes, and it's just, she might have a cold, whereas a normal child would go a little bit off colour but it's just you, yeah.

Describe an incident when they needed medical advice late in the evening and the local hospital...

Mother' We've just had I think an awful lot of support and I think we always, always knew there were people we could speak to if we needed like help, even in the middle of the night. You know. I think there were several occasions where her oxygen dropped and we did sort of take her up to, up to the unit just to be checked and just to put your mind at rest that she was doing what she should be doing.

In the middle of the night?

Mother' Yeah, [Father' Yeah] middle of the night, early morning. Sort of late in the evening. I think.

Father' But at one point had to have, a bit of lung tissue had come through her rib cage, sort of a hernia in her chest, which apparently can be post-op, can be quite normal but we rang. It's quite frightening to see 'cos as she was breathing this lump was just coming out of her chest. And we rang our local hospital and they said bring her straight up. The consultant was in waiting by the time we got there. They saw her and they double checked it with the specialist hospital on the phone there and then. Two consultants checked on the phone in front of me so they weren't keeping anything back. They explained it all, explained the next appointment we had. And the specialised hospital said that they'd examine it more closely but not to worry. And that, that was it basically. We weren't made to feel foolish or anything, you know, it was just, you know, it happens sometimes.