Interview CH09
Age at interview: 4
Brief Outline: Their son was diagnosed with Coarctation of the Aorta, PDA, Bicuspid Aortic Valve, Hypoplastic Aortic Arch, VSD, Mitral Stenosis and Pulmonary Hypertension. Treatment: Surgery at 3 weeks old, mitral valve replacement at 2.5 years. 2 cardiac catheterisations at 2 yrs and at 3 yrs. Further mitral valve replacement planned. Current medication: warfarin.
Background: Diagnosed at 3 weeks old. Parents' marital status: married. Occupation: Mother-Part time Secretary, Father-Bank Manager. Other children: one older child. The family do not live close by to a specialist hospital.
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Describes finding it very hard to ask for help but that once her health visitor was told about...
Describes finding it very hard to ask for help but that once her health visitor was told about...
When we came back I was here alone again. My older son was at school then. I suppose I did like go into myself a bit again as I had done the first time. But I was more willing to see people, but nobody came to see me. My health visitor didn't come out to see me. My GP didn't come out to see me. Nobody came out. I didn't ring anybody up or ask, ask them to come and see me, but I was desperate for somebody to just to come, to come out to see me. Then probably about a month or six weeks after we were home, I had a card come through from the health visitor, saying to come for this like routine check up at clinic and I just rang up, it was the voicemail, and I said, I'm sorry we can't make it. I didn't say any more than that. But a friend of mine, had, had her appointment was about ten minutes after ours. So when she went, she said, 'have you been, been to see me'. What happened was our normal health visitor had gone off sick, she was on long term sick leave. So the person that had taken over wasn't aware of [our son] they hadn't yet received the information from the hospital.
So here was me thinking, nobody cares, I'm all alone. Why hasn't somebody been out to see how we're doing? When really, it was a matter of, they weren't aware and I, I should of picked the phone up and asked for help. I really feel as if I really should of rang somebody up and said can somebody please come out and see us. But I didn't, I was waiting for someone to come and knock on my door. And that's wrong. You should, I realise now, you should not be afraid to ask for help. If I need, I mean, whenever this happens again, I shall be ringing up asking someone to come out and see us because it is just too much too cope with alone. I really, really would have benefited from having somebody. And once the health visitor came out, she was great. She was coming out a couple times a week and she wasn't really doing anything, just coming and having a chat and that was what I needed. Then somebody from hospital came out to see us and that just started the ball rolling. Then I was able to relax a bit, a bit more because I didn't feel so alone.
Explains that she sent her consultant an email detailing her questions and concerns and he called...
Explains that she sent her consultant an email detailing her questions and concerns and he called...
And then the next afternoon, he rang me up. It was brilliant. He rang me up and he was chatting through it all and talking, talking, just explaining everything to me. And I came off the phone feeling really much more reassured because when we were at the hospital, after the catheter and he told me, I just wasn't thinking straight, I just went to pieces. My dad was there with me. And my dad said to me, 'try and stay calm, he's got options'. So all I remember is my dad saying that, he's got options. I just couldn't think straight, I just couldn't, I was just. So when I sent this email to the hospital and then he rang me up the next day, with all these questions, that was just brilliant. I felt very reassured because he'd done that. I thought that was very good of him to do that.
She returned to work part time when her son was six months old and explains that it had been good...
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She returned to work part time when her son was six months old and explains that it had been good...
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They have travelled abroad with their son and did not experience any problems getting travel...
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Mother' We have never had a problem at getting that. When we booked our holiday to Disney, we just, we just had to take out, out some extra cover to cover him for that and we had a letter from the consultant to say that Matthew was safe to travel and there was no worries that he'd have corrective surgery and so we just had to have a letter to go with that. We just recently taken out annual travel insurance, and again we've told them everything that there is to know and I think we had to pay I don't know, about an extra 20 or 30 pounds to get some cover on there. So we've never had a problem with that.
So your holidays haven't really ever been effected in terms of where you can go?
Mother' No, we've been to Ibiza, Majorca, We've been to Abu Dhabi. We've been to Dubai and we've been to America because we can't, can't live in fear of not doing things, we just have to carry on as normal and try and live a normal family life for everybody's sake. It's not always easy, but we do, we try to.
Explains why she thinks it was a mistake not telling her toddler that he was going in to hospital...
Explains why she thinks it was a mistake not telling her toddler that he was going in to hospital...
But he had dreadful nightmares for months afterwards. And I think it was a mistake not telling him, I don't know, maybe it wasn't. But I just, since then when I've read, read about advice prior to your child going for surgery, the advice given is to tell them. But you don't know sometimes what to do for the best.
I think that we've really, really learned a lot from that second operation by the fact that we didn't tell him, or maybe just because he's older, I don't know. But I try to be as completely honest and tell him everything that I think he needs to know, not all the gory details. He knows he's got a heart condition. He doesn't know he has to have more surgery, we've not told him that. He knows the doctor's fixed his heart.
Her son is getting on very well at school and enjoying it.
Her son is getting on very well at school and enjoying it.
The staff are all aware of him. They've all been told like to keep an extra eye on him. If he has a fall or anything they go and help him and he says, 'oh no go away, I'm Ok'. He doesn't like to be over fussed. He's just, he's just adorable. He really is and he's very precious.
Advises parents to trust their own instincts if they have concerns about their child's health and...
Advises parents to trust their own instincts if they have concerns about their child's health and...
The only, only other thing that I would say that I have learned from this is to trust my own instincts and that's what I feel as if I've, I've done all along, that when he was, when he was poorly, I did feel as though, I allowed myself to be fobbed off a bit then and I wasn't happy. But then I have learned now to trust my own instincts and if I'm not happy about anything, I am not going to sit and worry about it, I am going to take him down and people can laugh, can laugh at me as much as they like or think, here's that neurotic mum coming. But my son cannot speak for himself, he can't get things sorted out, I have to do it and there's been times when I've thought, gosh, if I was doing this for myself I wouldn't be this forceful, this forceful about things, I would just accept things. But because I'm doing it for him, then I never ever want to be in a position, whereby, I'm thinking, if only I'd been and asked that question. If only I'd done that.
Explains how they got a INR home testing machine and the difference it has made to their life.
Explains how they got a INR home testing machine and the difference it has made to their life.
What's that called?
Coagu-check
How did you find out about it?
When he went in for his valve replacement, the cardiac liaison nurse told me about it. And so I had read about it and read about it on the Internet, that there was this machine, a German machine, they use it a lot in Germany, but it's only recently been introduced in England. And then after his operation, the cardiac liaison nurse came around and spoke to me about it. And so we really desperately wanted one of these machines, but then we've had problems because we're living over here, because there isn't a haematologist at the hospital here and if I was to do blood tests on my son, I then need to get in touch with somebody to find out whether or not I should be adjusting his warfarin dose which they couldn't take on living over here. They were unfamiliar with the machine. Anyway we've got it all sorted out now and I can test my son. We've only had it for a few months then I can ring up the hospital in England and the cardiac liaison nurse, I can speak with her and now she can dose [our son] tell me whether or not I need to adjust it. So that's taken a long time to get that set up and well it's taken two years. Since his operation, I've wanted, I've wanted this machine. So we are now the first people living here that have got this machine.
Describes learning of the diagnosis as the investigations were being carried out and discovering...
Describes learning of the diagnosis as the investigations were being carried out and discovering...
And the way they told you, was that the best way they could have told you?
I don't, I can't really think that they could have told us, told us any other way. I think a lot of heart babies are admitted to hospital thinking, doctors thinking that they have a chest infection. I don't think there's any easy way of telling somebody that their child's got a heart, heart condition and requires surgery. I don't, I can't think it could have been improved on in any way. We, we sat down with the consultant and the surgeon and when they were doing the heart scan we were sat there with them. So as they were discovering things, we were there and they were telling us as it happened. It just all happened so quick. We were just totally unprepared.
Explain that his condition was so serious that there was no time to consider any option other...
Explain that his condition was so serious that there was no time to consider any option other...
They were able to feed and care for their child when he was in intensive care. Staff were always...
They were able to feed and care for their child when he was in intensive care. Staff were always...
Were you able to take care of him in any way?
We were able, I remember being able to feed him and that was lovely. And I remember being able to lift him out and to hold him although he was all wired up and it was a job to lift him up and keep all the wires in place that they didn't end becoming disconnected. We were able to do that. They were, they were, they were very good actually at getting us back involved in looking after him. They encouraged that a lot. Which was brilliant because that was what I wanted to do. And so we were able to comb his hair and just to wash his little face. Yes, yes we did.