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.

Describes finding it very hard to ask for help but that once her health visitor was told about...

So it was very hard. That was the hardest thing, I just felt all alone. Because our parents were not here, they obviously wanted bulletins on how, on how things were going and I could never be really honest and say 'well I'm really worried' because I didn't want to worry them because they were over, over the water and they couldn't just pop in and  comfort me or see how our son was doing. So I always felt as if I had to put on a brave face for them. I always felt that I was bottling things up and this went on for a few months until I was able to get a grip on things.  

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...

When I found out about this second operation, the mitral valve. I came back and I was reading everything and I was on the Internet, everywhere I was looking. And then I typed up this letter to send it to [our son's] consultant, I think I might have emailed it to him. All these questions I had; can you please tell me this, why was it not detected before, has this just happened, was he born with this and you've only just discovered it, is it something that's happened in the meantime and so I sent him all of these questions because I said I'm completely confused, I don't understand, how come I was so unprepared for this and I thought, oh gosh, wonder when I'll get a response.  

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...

And when he was about 6 months old, I decided to return to work, which a lot of people I think, thought I was mad and how could I possibly be returning to work. But it was just right, I just felt it was right and I went back to work on a part time basis. It was very, very hard. It was very, very hard decision because I had to put him with a childminder. But I just felt that being at home, I was just, I wasn't coping very well being at home, I was just too worried. I was wrapping him up in bubble wrap and I just needed to let go of my grip a little bit. So I did that and it was good, it was good for me and it was good for him as well. He was then mixing with other children and not being at home with mummy all the time [laughs]. So, it was very, it was very hard to find the right balance but I think we did.

They have travelled abroad with their son and did not experience any problems getting travel...

Has your holiday insurance ever been difficult?

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...

So, he was two and half at this stage, and my husband and I thought, well what do we, do we tell him, do we not tell him. Because obviously before he'd only been a weeks old and he knew nothing about it. Well I wanted to tell him, my husband thought it better not say anything to him. So we did lots of role-playing at home, bought a doctor's kit, did all these different things. We took him to the local hospital because they have on a Saturday morning, have a children's club for children that are going in for surgery, they can just play with the equipment, the blood pressure and that. So I took him down there and he was having a great fun doing all this and not realising what was to come and me thinking, oh gosh this is awful. And the night before his surgery, I still wanted to tell him, and my husband said, No, I think we shouldn't, we're better off not telling him. So we didn't and on the plane, I'm saying to him, ' oh, should we not say anything where we're going to.  We hadn't even told him we're going to hospital. And we're having a real, a real battle between ourselves what shall we do. We didn't know, we didn't know what to do for the best. I thought tell, my husband said not to tell. 

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.

Yes, well. He's at school. He's an extremely outgoing, friendly boy. If we're on holiday, he is the one who's going to make new friends because he just goes hurdling head first into a situation. He's enjoying school. He's coping well. I thought that he'd be worn out, he'd be having a sleep in the classroom. These were things I was concerned about. But I'd been up to the playground many a time to watch him. He's hurdling around the playground like anybody else.  

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...

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.

I wouldn't like to travel anywhere that doesn't have good hospital facilities. He has these regular blood tests. He was having these blood tests every two weeks, so that was a concern where we went away, that there was a somewhere if we had a problem, we could take him to hospital. But now I've just got trained on a home testing machine, so I can do his blood test at home, which is fantastic because there's a machine, it's portable, I can take it away and I can just and then if [our son] has a fall or anything or if he's unwell, I can just do a blood test at home. Whereas previously if he was unwell, I was having to carry him down to hospital, to go and get a blood test done. So I mean that's fantastic. It makes us, makes us more mobile.  

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...

It was just all too much to take in. It all happened so fast. The Monday we were in hospital here with a chest infection, the Thursday he was having his heart surgery. So, I do remember people as being sympathetic and supportive and appreciating the fact that we were completely unprepared for this. We had no knowledge. And there might have been bombarding me with a load of information but I just cannot remember. I just, I just couldn't think straight. 

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...

I don't recall us being involved at all. We were just told that this is what he required and that was it. I mean, he had to have, he had to have his surgery. He wouldn't have, he was in heart failure. When he went over to England he was in heart failure so there wasn't, there was no time for negotiations or discussion or second opinions or, we were told on the Tuesday, he had his surgery on the Thursday. I don't think, I don't recall us being given any options that they could do this, this or this. This is what they were going to do and I suppose we never, we never questioned it. We were just, there was nothing else we could do. We just had to leave it over, just hand him over to the experts and pray and hope that they would get it right.
 

They were able to feed and care for their child when he was in intensive care. Staff were always...

The nurses there were absolutely fantastic and they understood, they understood that obviously there would, here were two parents, all the trauma that we'd been through, all the anxiety that we felt, and they were, and very, very willing to chat us, chat us through everything and tell us everything that was going on. I can't really remember us, too much being involved in the decision-making. They were telling us what was going on and I suppose if we were not happy with something then we could have spoken up. And we had, we had plenty of opportunity to speak up or to express our views. Doctors were always on hand. We didn't really have any concerns about, about the treatment once they were in there.
 
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.

There is no specialist hospital nearby. If she has concerns she calls the specialist and she has...

And I've never felt that people, that people here around me are experts, which they're not. They can't be experts in everything I mean I can't expect them to be. Whereas now, I feel as if I am much more in control of the situation. I am much more knowledgeable and if I have a problem now, then I don't hesitate to ring the hospital up. And I have done. I've got to no matter, how petty it might be, then I just ring up because I'm not prepared to just lie awake and cry at night and worry about things and I need to get an answer so. I mean, they are very good. I can ring up and there is always someone there that I can speak to and that can answer my questions. So I, I would, would now ring the hospital up in England and we have open access to the children's ward here, so if I do have any problems, we can just go down there and I can get him checked out. I mean they are very good, they're very accommodating, just not experts. But got lots of people, who live in England, who are in the same position, whereby they haven't got a specialised hospital on their doorstep, but at least with them, they can just jump in the car and drive, which is a bit hard, when you think you have to be air ambulanced across and I would never want to be in that situation again.

Her 5 year old son who had a complex heart condition has plenty of energy, is very outgoing and...

I mean if you were to see him, you would not know that there was, that he had a heart condition. When I tell people he's got a heart condition, they don't believe me. They think it's something, a minor thing, he's got a heart murmur maybe and they just can't believe him because he is such an outgoing child. He runs around and jumps up and down everywhere. He won't stand still, he won't walk anywhere, he runs everywhere. But this is all following on from his second, second heart operation. After his first operation, I suppose he was just starting to deteriorate and he hadn't got the same energy levels. He's fantastic and he's really, he can really hold his own now. Stand up for himself. 

Explains that her son was proudly showing off his scar to everybody when he was around at a...

When he's around at a friend's house having tea which he was the other week, his friend's mum was telling me that my son was there proudly showing his scar off to everybody. [laughs] He's not, not ashamed of his scar, he shows it off. He's got quite, quite a big scar. After his first operation, the scar was very neat. But after the second one, I forget what it's called, Cailoid I think, it is, where it's gone like really red and lumpy. So it isn't a discreet scar and you can see it a mile off and he stands proud and shows it off [laughs]. I think I've learned a lot from him really.