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Parents of children with congenital heart disease

Interview CH26

Age at interview: 5
Age at diagnosis: 2
Brief Outline: Her daughter was diagnosed with Partial Ventricular Septal Defect after GP noticed a heart murmur when she was two. Treatment' open heart surgery to repair hole and mend the valve at 2' yrs old. Pacemaker fitted 5 days after surgery. Possibility of further surgery in the future. Current medication' none.
Background: Parents marital status' separated. Occupation' M-Nursery Manager, F-Recruitment Officer. Other children' one older child. The family do not live close by to a specialist hospital.

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Describe their daughter's symptoms and diagnosis with a partial ventricular septal defect at the...

Describe their daughter's symptoms and diagnosis with a partial ventricular septal defect at the...

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Mother' We were on holiday as a family, the four of us, my husband and two children and when we were on holiday my youngest daughter, we noticed that she was quite breathless. It was quite a, a hilly resort we were at and obviously got a lot of climbing of steps and we noticed that she was quite breathless. So we're coming back from holiday which was in October we returned back and I took my daughter to the, to the doctor's, to my local GP. 

When I turned up there she checked her over and she, she gave her some antibiotics for her chest infection and she asked me she didn't alarm me at all but she asked me to come back the following week. Just to double check that it had cleared up. This is really a, you know, [my daughter] had had chest infections already. 

So we returned the following week and when I returned the doctor mentioned that she could hear a heart murmur and she said, 'Don't be alarmed' you know 'it's found in many children. Don't worry about it but just to, you know, to have it double-checked she needs to be referred to the hospital.

And I really I was quite calm about it, I wasn't worried about it and we just sort of sat and waited for a hospital appointment to come.

So we went in, and went to the hospital with her first of all she, they did an ECG. The doctor sounded her and he said yes that there was definitely a murmur there and he asked us to go over to the main hospital and she was given an ultrasound over there. Then I think my heart rate started increasing then and I thought 'Yeah, there's something wrong'. And we went over and we were taken into this room and my husband and older daughter was there as well and we went in and they took the ultrasound and the doctor called for somebody else to come and have a look at it and by then I just knew there was something major and the tears started and you just get in such a state.

And by this time I'm getting so upset and that my older daughter's getting upset, you know, but we still really didn't know what's wrong and they said that yeah [our daughter] had a hole in her heart but there was, was slightly more than that and could we go back over and see the consultant over in the children's hospital.

 

Describes feelings of 'why us', shock, anger and relief when her daughter was diagnosed with a...

Describes feelings of 'why us', shock, anger and relief when her daughter was diagnosed with a...

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I suppose initially, your first reaction is 'Why? Why us? Why my daughter?'. That, you know, I think that's a reaction that most people would have. You know, 'Why, why does it happen to us?' You know.  And then, I think, I think you have to get over that feeling and we went through many things, it was just, I, I think it was shock. I think we were in so much shock to start with and we couldn't stop crying. None of us could stop crying and I think we were trying to put on a brave face for the children my husband and I and trying not to show them too much. But it was just such an emotional time, you know, and it was, it was just so hard to do that.  

And I suppose you just went through various emotions of, of why hadn't it been picked up already?  Those were my initial things, the anger of it. You know, why, why was it not picked up when she was born? Those sorts of things. And then I think once those feelings subsided as sort of the weeks went on and I really started to, to thank God really that it had been picked up and that the doctor had seen it because it could have gone on undetected. So I did start to thank God and think 'Yeah, you know, you know she's going to be fine. She will go through surgery but at least it has been detected' you know. It could have gone on and she might not have been detected, you know.

 

Believes her daughter's heart defect happened for a reason and she didn't blame anyone for it.

Believes her daughter's heart defect happened for a reason and she didn't blame anyone for it.

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I have but to be honest I haven't dwelt on it. I really haven't dwelt on it. I feel that there was a reason that my daughter had this heart defect. I don't know why, I don't know whether, you know, in later life that she'll go on to be a support to somebody else who's had a heart disorder or what. I really don't know. So to be honest I haven't dwelt on it. I feel that there was a reason. I haven't thought about it, I haven't thought about, you know, is it something I did or, I just haven't put myself through that. I think, I think we've had to go through enough dealing with the situation that it would just have been an added emotion for me. And I didn't blame myself for anything and I didn't blame medical staff for not picking it up or anything. As I say before we did have a bit of an initial, 'Why was it not picked up?' But it wasn't the end and I certainly didn't dwell on 'What if I'd done this?' or whatever...

 

Comments that the communication with cardiac care team had been excellent and that they supported...

Comments that the communication with cardiac care team had been excellent and that they supported...

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OK. I think our communication, right from sort of meeting  the doctor here, up here and down to the specialist hospital I think they were all wonderful, I really couldn't fault them. they had time for you. I think they know what you're going through, they work with these children with  heart disorders every day and, I really couldn't fault them. They were there for us, they answered our questions, they were there emotionally for us as well. You build up a relationship with them and they were friends towards you. And I just felt that there was genuine care from them really and the support, I really, I couldn't fault it, I really couldn't fault it. They really were excellent.

 

Describes how her daughter's pacemaker was checked at follow-up appointments at the pacemaker...

Describes how her daughter's pacemaker was checked at follow-up appointments at the pacemaker...

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The other thing is that we have to go to the specialist hospital for regular check ups. There's nothing really up in the area here. She's still goes to the consultant up here  after the surgery to have that all checked and to have the scan and things done up here and to keep an eye on that. And really that's a yearly thing but we go down to the specialist hospital, to the pacemaker clinic  to have her pacemaker checked. That's a specific day every month that that is done on and so we go down. Well to start with when we went down it was sort of every 6 months and so at the beginning a couple of times, I think the second visit down  there was a problem. Well, how they, they test it they've got like a mouse of a computer, what I would call a mouse of a computer but it's, it's a round disk, like a big Polo mint really, and they sit that on the pacemaker where it is and they connect it. It's connected to a computer  and they can set the computer to, to change her heart rate and things to see if the pacemaker kicks in and things. And they can change the setting of the pacemaker and things. It's just, the technology is just wonderful.
 
 

They weren't able to share their feelings and talk to each other about their daughter's illness...

They weren't able to share their feelings and talk to each other about their daughter's illness...

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He was hurting, My husband, I mean we were both absolutely devastated and I suppose it was, for my husband, it was the most I've ever seen him upset, you know. I'd seen him crying so much I suppose. So you know, he was hurting just as much as I was and I suppose, I think we found it difficult to share that with each other and I think the way things worked, I think because we weren't really sharing and talking about what we were feeling we were just sort of dealing with it on a day to day basis and not really discussing it that I think I didn't realise what an impact it was making on him and I found out that my husband was actually taking a condolence and talking about it with a colleague at work whereas he, he should have really been talking about it between the two of us. So it was both of our faults really. So it really has made an impact on my marriage. Since we've found out and since had her surgery my marriage has now ended and I think that it has a lot to do with what we went through.
 

Encourages others to have hope in the many successful treatments available nowadays for children...

Encourages others to have hope in the many successful treatments available nowadays for children...

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Yeah, finding out is, your life, you, you feel like life has ended when you find out initially. Especially for us we'd had had two years of [my daughters] life not knowing that she was ill. It, it's not going to be easy for any parents but I think maybe when it's diagnosed in pregnancy and things like that you're, you're coming to terms with it before the baby's born and things. Whatever time it is it is going to be, you know, heartbreaking for any parent but I think you have to think that the, the surgeons and things that are, that that are in the hospitals and things these days, you know, they just, the professionalism is just amazing, the technology and things that there are today that you now children, children survive, children survive. Whether, not all children need surgery but there's specialist treatment out there.
 

Advises parents to talk to each other about their feelings and to make time for each other.

Advises parents to talk to each other about their feelings and to make time for each other.

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So, really the point for other parents it is important that you do talk it  through, talk about your feelings, cry together, share the experiences together. I think it's sometimes difficult as well, you know, it's a motherly instinct as well that you know especially after the surgery [our daughter] had, she was the most important thing to me and I spent at the hospital and things I spent all my hours with her, all my time with her. We came out of hospital, you know, you know, we were at home together so a lot of my time was taken up by [our daughter] and I suppose my husband did feel neglected. So, it is important for people  for couples really to try and sort of make time for each other  and just to discuss how they're feeling and just to share with each other. I really learned that  and I know, I know it's been a hard learning experience for me, you know, my marriage ending  but I think it's, it is because we didn't share our feelings enough with each other, you know. 

 

 

 

Explains that the whole family had found it reassuring to watch a video about pacemakers for...

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Explains that the whole family had found it reassuring to watch a video about pacemakers for...

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The staff were absolutely tremendous. They talked it through with [my elder daughter], they showed her a video, we got to see a video as a family all about pacemakers and about children that had pacemakers fitted and how it didn't make a difference to their life and things like that and that was a great support, it really was a great support to look, the whole family not just [my elder daughter]. And it was reassurance for [my elder daughter] as well that that wouldn't happen again. That episode wouldn't happen again because she had a pacemaker and if her heart rate changed the pacemaker would click in for her. So that was, that was a relief. 
 

Describe what they did and how they felt when their daughter was having her operation.

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Describe what they did and how they felt when their daughter was having her operation.

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I was so anxious and I didn't want to leave the hospital, I wanted to stay there. They gave us a pager and they were going to page us when the surgery was over and I was just so anxious I didn't want to leave the building but my husband made us, made me leave the building and we went to some shops and things. And I just, I couldn't concentrate but that was his way of dealing with it. I just wanted to get back to the hospital you know. You know, females like to shop but not that day, it was just, I just wanted to be there just in case of anything. And I just kept on saying 'Let's go, let's go back, let's go back to the hospital'. So we got back and we sat outside. It was a beautiful day and I just, I couldn't concentrate on anything. I couldn't look at a book or a newspaper or anything. I just wanted to see her and I just wanted her out of the theatre. So we finally were paged and we were told that we could go and see her.

 

Describes how she felt about her daughter having a pacemaker implanted.

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Describes how she felt about her daughter having a pacemaker implanted.

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They did actually say to us before the, she had the surgery that there maybe a complication and she may need a pacemaker. So we had sort of previously been warned about it but they, they really sort of weren't quite sure what, what was going wrong. So they felt that they, they connected her to this pacemaker. So they connected her to the pacemaker and it was on a setting that would only come on if the heart rate dropped again. And they, so that they could see if she needed it or not. So it wasn't set on all the time, it was just set at a setting that if she needed it, if her heart rate dropped it would come on again.  

So that night, through the night she needed the toilet and got on her little potty and things and she was in a little bit of a state and things 'cos she wouldn't sit on the potty, she wanted to get up to the toilet. And she couldn't 'cos she was connected to all the machines and things. And again her heart rate dropped again. And the, the pacemaker clicked in for her and brought her heart rate back up again. 

So they decided on the Sunday morning that she needed a pacemaker fitted as a back up really. She wouldn't need it all the time but it was there in case her heart rate did drop again. And for me it was 'Yeah, do it. Get it in now' you know. I know she was going through surgery again it was going to be a minor op, a, minor to what she'd had operation. I knew it was about an hour or something the procedure was going to take but I just wanted it done. I just wanted the pacemaker in so that it wouldn't happen again and she wouldn't, her, her heart rate wouldn't drop again.

So very quickly it was just in a matter of hours she was back into theatre again on the Sat, on the Sunday. 

So she went into theatre and it was no time at all really. She was cut open again where they put the pacemaker in and cut open again into her chest where she's been opened previously to put the, the wires in to connect it to the heart. But for me, I know I was putting her through surgery again but it was just a relief, I just didn't want anything to happen to her. She came so close to death that day and I just, I just knew, know it had to, it had to be fitted. Whether it was going to happen again or not, you know, I wanted that pacemaker for her.  

 

Parents concern when they are told that an expected procedure (catheterisation) will not take place.

Parents concern when they are told that an expected procedure (catheterisation) will not take place.

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Then a few weeks went, a few weeks went, passed and we got a letter in saying that the specialist was going to come and meet us up in [our home town]. But there would be no catheterisation test done and I think I was really angry then because I had been told by the first doctor that this would be carried out next. This would be the next thing. But after, since found out that really the defect that [my daughter] had, it wasn't really any need for it.  

But I think when somebody tells you something and you grasp on to that and you think, that's the next thing that's going to happen. So when we're told that wasn't going to happen, I was devastated really. Everybody kept on saying you really don't want to put her through that, but I wanted it done because I was scared that something was being missed out or you know, they wouldn't pick up on something and I was just so frightened that it if it wasn't done, I wouldn't get the full extent of what was wrong. So I think it, it took reassurance from speaking to the specialist that, you know, for her to say, 'No look there's no need for this test to be done'.  But between getting the letter and seeing her it was quite a, time really because I really was, I was frantic really, 'cos I couldn't understand why they're now, they're were now saying no it doesn't need to be done.
 

Describes the parent accommodation at a hospital in Scotland where they were able to stay with...

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Describes the parent accommodation at a hospital in Scotland where they were able to stay with...

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We were staying in the accommodation beside the hospital and again that was just superb, the accommodation, the facility that is there for parents as well. And everything was there for us. There was laundry facilities, just everything, a TV room and whatever. And the food in the hospital and everything, I couldn't fault anything. The way we were looked after and the way my daughter was looked after they were really, are superb people. They really are.

And, can you tell me about the accommodation?  How you, you said it was in the letter, is that right?

The accommodation, we had a leaflet on accommodation which was just alongside the hospital really, building's that are adjacent to the hospital. And where we were it was different, it was quite a big accommodation and it was sort of individual rooms but the room that we had was actually, it was an individual sort of accommodation from the rest of it actually and it was two rooms so there was myself and my husband and another family in the other room and we had our own sort of kitchen. It was like a little flat to, actually a sort of self-contained flat, our part of it. And we'd a bathroom that we shared with the other couple. And we were able to use the kitchen and things like that. And it was quite good because we met the other family that were beside us and things and there was a telephone and everything linked to the accommodation as well so that the hospital, the ward phoned over if they needed you or you could phone over to the ward and things as well if you were trying to get rest through the night and things.

So it was excellent, it was really good. And you were able to prepare your own meals and things or you could have the meals in the hospital.

 

 

Explains that the pacemaker her daughter has, which is used as a back up if her heartbeat becomes...

Explains that the pacemaker her daughter has, which is used as a back up if her heartbeat becomes...

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In terms of her daily life of having a pacemaker there is absolutely no difference to it at all, nothing. I think there's a handful of things that she can't do which is like bungee jumping and things like that, things that she probably wouldn't be doing anyway. Mobile phones, that's something else, just to be careful with the usage of mobile phones, that she's using it in the opposite side from where her pacemaker is. Sort of going on holiday, things like that, sort of, you know, going through the scanning things at the airport and, but you're given a card and that just says that she is the wearer of a pacemaker and you just show that and there's, you know, there's no problems and things with that.  

So you would never know. I forget about it, you know. And she calls it 'Pacey' so it's, you know, you normally say to her 'What's Pacey doing today?' and she'll say he's sleeping.  So, you know, it's, it's a joke, you know and that, you know, we have fun about it, not jokes, we have fun about it and, you know, we, we speak about it now and again. You know, 'What's he doing?' or, or if she's really upset about something or throwing a temper tantrum or something I might say something like 'You'll get Pacey, you know, he'll have to start working' or whatever, you know. So, but, no, it makes no difference and you, you can feel it. It's just, it's, it's really very, very small, it's one of the smallest pacemakers in the world that she has, well is actually the smallest one in the world that she has. 

It's fitted down, down at the bottom at the sort of the left hand side of her body and if you put your, she's got a small scar obviously where they inserted it and you can feel, you can just sort of, if you put your hand round, round her tummy there you can feel the shape of it. It's not actually in her, in a small little bag like a, like a, a, just a little material bag and it just staves any allergy or anything to her body because metal against her body, it's in a little bag. And she was very fortunate to have that done I think there was somebody in, in theatre before her had an allergy and they'd bought these bags in specially, these little net bags in specially to put pacemaker in. So because they'd fitted this child with one they just decided that they were going to put [my daughters] in one too. So she's, not everybody's got that but it's in a, it's in a little bag. But it makes no difference to her life at all.

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