In terms of her daily life of having a pacemaker there is absolutely no difference to it at all, nothing. I think theres 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 shes 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 theres, you know, theres 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 shell say hes 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 shes really upset about something or throwing a temper tantrum or something I might say something like ‘You’ll get Pacey, you know, hell 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, shes 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 shes, 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.

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 were 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 theres 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.

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 weve 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.

Yeah, finding out is, your life, you, you feel like life has ended when you find out initially. Especially for us wed 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 theres specialist treatment out there.

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.

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 shes 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.

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 shell 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 weve 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…

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.

The other thing is that we have to go to the specialist hospital for regular check ups. Theres nothing really up in the area here. Shes 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.

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 were 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, theres 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.