Mother’I think initially a lot of the family didn’t understand. We explained quite in depth didn’t we and they didn’t understand and I think sometimes we didn’t really understand – but especially older people they didn’t really understand the seriousness of it like certain members of my family, older generation, like they’d see something in the paper that was like a very mild problem and they’d say Oh look, you know, look, look, shes fine now. And I’d say well it’s not the same. It’s very different, and we got to the stage where we just didn’t say, oh, lovely and wed leave it at that. And even now sometimes I don’t think people realise how serious her problems are.

Father’I think the family do now.

Mother’Immediate family do.

Father’Yes, But I think it’s just sort of friends who we see but not a lot, I mean they’re nice enough to ask but if you sort of say shes been in and out of surgery they say is that it then is she OK? And I think because they sort of think because it’s been righted in that situation, then shes through the worst and that and you can’t sort of explain to them that no she isn’t. At this present moment in time, theres more to come. And, but that’s just somebody elses problem if you know what I mean. They’ll ask and say and you know their generally sort of interested but as soon as that’s gone and something else happened, the problem’s not there for them but it’ll always be there for you sort of thing.

Mother’I think people don’t know what, don’t know how to approach you about it sometimes. I felt that some people completely avoided us. And some people didn’t know whether to ring or write or they’re frightened to ring in case something had happened. I found that people at the school used to cross over which I found really upsetting.

Father;Shock, very shocked.

Mother;Very shocked. I mean, like everything else once they had, had time to think about it then it’s like everybody’s parents really, they’re, they’re your strength. They don’t, they’re not there all the time but they’re there if you need them [Father;Hmm] to talk about anything, you know, or to give you a hand or, so family’s very important when you’re going through things like that.

Father;I mean it’s, when you’re in the hospital and that and you get things explained to you about the condition that your son’s got, then you’ve got to go back and explain to your parents which makes it harder again. And then they break down and you try to be strong for the wee boy and then go and tell their friends and then suddenly we found out that our son’s only got half a heart.

Mother;Yeah. It escalates.

Father;Some people don’t listen and then they come back and it’s like you have to deal with, the day we got married, your friend’s mother was there – eh? – and we were sitting out the back in the sunshine – eh? – because we went back to the house for the reception and that and she says ‘How’s your son doing?’ I says ‘Oh, hes doing fine, like, you know, were quite happy with him’ and ‘It’s a shame that hes only got half a heart. I says ‘Sorry?’ I says, ‘Hes not got half a heart’ and she says ‘Well that’s what I’ve been told he has. I says ‘Look I am the son’s father, if anybody should know I will know. But it was because, well one of our, [Mother;It was…] one of our parents saw the doctor show a diagram and he took the heart in half and showed him inside it and when hed picked it up wrong and thought he had half a heart. You know. But things like that, I mean…

Mother;They showed them the half that was actually needing the work done so they assumed that…

Father;That he had half a heart.

Mother…he had half a heart. And it wasn’t. Just, too much things going on in your mind all at once, you can’t really take everything in so.

In different ways. Very differently. Some people avoided me, didn’t want to talk about it at all. Other people wanted to talk about it all the time, so very, very different. As I say, some people would sort of keep on and on, they wanted answers and I couldn’t give them answers, and it was very difficult to make them understand that I can’t give them answers. And some people would even sort of say, well you want to find out, you want to ask, you need to know these answers. I say well they can’t give me these answers. And a lot of people can’t understand that and that was quite difficult to get through to people, that you know, there aren’t answers at the moment, or definite yeses and no’s. But on the whole, everybody was very, very supportive. But as I say, I think, some people found it very difficult, they just want to avoid talking about it. And just almost ignored the pregnancy in some ways, like because there were problems, they didn’t want to ask me how the pregnancy was going, didn’t want to talk about it at all. And I suppose, just everybody sort of handles it in a different way really. But no very mixed sort of feelings but nothing awful, I can’t say that anybody was awful at all. But everybody sort of deals with it in their own way;

Other peoples questions when they just want to know from an information point of view and you think you understand then actually they’re quite helpful to be having those questions because it hones your own understanding. When, as we experienced, my son’s great uncle also is bradycardia and his consultant has never implanted a pacemaker in him and strongly feels that a certain type of bradycardia should not be operated on. And as one of the country’s leading exponents, or one of the first pacemaker implanters his knowledge base had been very important. That added a huge pressure because we were then being persuaded by members, senior members of the family, that it was incorrect to have the pacemaker and because we only had a 48-hour period in which to prepare for the operation, that, that strain was horrendous.

And I’d say there you need to try to speak to the relevant consultants as fast as possible. And by that I mean if there is a close family member who is trying to contradict the advice that you’ve been given then get to speak to their consultant as fast as possible. And in our case they couldn’t have been more helpful. As it happened his consultant knew about my son’s case because the medical world is quite a small world and so our consultants emailed the files over. There was a discussion I was able to telephone, I was able to hear exactly what their opinion was and in fact the current consultant, the great uncles current consultant felt that the operation was imperative. And I therefore was able to say to him ‘Please could you inform your patient why you say that? And as fast as possible because the stress that were experiencing is huge.

At a very stressful time?

A very stressful time anyway. So to have contradictory advice coming through is very hard.

Mother;I think as we got stronger dealing with it and it wasn’t such a shock and it all sunk in [Father;Yeah] I’m talking now sort of like March time, just before it was cancelled sort of thing, I know I was able to say, or after it was cancelled ‘Hes, hes got to have open heart surgery, hes got to have a heart operation. Now to me I was saying it and thinking ‘Hmm, I know exactly what that means’ but just like, I remember saying it to our neighbour and she was ‘Oh no, that’s oh. And of course they want to say ‘Oh that’s awful, I’m so sorry’ but it, it is awful but they don’t really want to say awful because that makes it sound frightening. They were all frightened for us I suppose, or shocked because they’ve all got children;

And they’re thinking ‘What would we do?’ [Father;Yeah] And somebody who I’ve known 20 years or 15 years actually had the courage to say to me and I used to work for her and look after her children as a nanny said, and shes the only one that said it to me but I bet many people thought about it, ‘Oh I’m so glad it’s, it’s not my daughter, I don’t kno; [Father;Yeah] what I’d do if it was mine. I can’t imagine what you’re going through. And it was actually a relief because everybody was thinking ‘Oh, glad it’s not mine but she said it and she said ‘I’ll help you in any way can but I don’t know how to, I can’t imagine what I’d do if it was one of my girls. And she was lovely, she was a great help.

But everyone was really, I mean work were great and said ‘Take as much time as you need. So all those things even though they’re not, you know, they’re not providing immediate sort of support at, at the coal face as it were it’s really important to know that everyones saying ‘Were thinking of you’, and, ‘Take the time you need’, and lots of people sent great books that they had. ‘Oh this is a fantastic book, you’ll be able to read it even though you’ll be really upset or whatever. So I got sent lots of things to kind of occupy me and things and that was good.

I think it’s important to talk to people about it. I mean I know that depends on how you are as a person. I know a lot of people are a lot, probably a lot more private than we are but I think even though it might be hard to talk about it and it might be upsetting, actually it does help because actually being honest with people about what’s happening, when it’s going to happen, the uncertainty of it all and things is really helpful. Because even though you might be ‘Oh why should I tell people at work?’ this is very personal actually it is important because it’s going to affect your ability to be at work, your performance and things like that and I think probably being open about what’s happening it was really helpful for us anyway because it meant that people could offer support and I would always do the same again I think;

Mother’We were very lucky that we, well we didn’t organise it but it just happened that way that this network of people was building up and we would phone [my husband’s] friend, his best friend [name], [Father’Hmm] and he would phone out specific people and they would then phone on other people [Father’Hmm]. Otherwise the phones would, just didn’t stop ringing and when you come home you don’t want to be going through what’s happening at hospital and it was good that they’d sort of arranged this so that as soon as a bit of news came out of hospital it all got out to everybody [Father’Yeah] without us having to do it. We knew if we phoned, made one phone call then everyone would be told. [Father’Hmm] And that was a relief to not have to do that as well. [Father’Hmm] That was a relief.

And how did friends react? You told me a little bit about coming home from hospital but in general how did they react?

Father’I don’t’ think they knew how to react.

Mother’No. I think the first time when it all happened and it was a shock. We were so long in hospital that we didn’t see the impact of what happened to our friends. But I know the messages that we got back were in flowers and everything. They were shocked and didn’t know what to do. But then also I can remember them coming round and saying ‘Oh, is that her? You know, we expected like tubes and stuff’ [Father’Hmm] and there she is sat on the sofa and they [Father’Hmm] they said ‘Oh, shes like, shes normal then?’ And we said ‘Yeah you’ve just got to be gentle with her scar and apart from that, that’s it. [Father’Yeah].

Mother’They were like us, they didn’t know…

Father’We were na’ve…

Mother’What she was going to look…

Father’You’re na’ve about it until it happens to you, aren’t you?