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Parents of children with congenital heart disease

The operation

When it is known that a child will need an operation, the family is offered a pre-admission visit to the hospital to meet the staff and become familiar with the environment. One mother describes the benefits of the pre-admission day and of visiting paediatric intensive care before their daughter went into hospital.

 
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Describes the benefits of the pre-admission day and visiting paediatric intensive care before...

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Age at interview: 3
Sex: Male
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When we went in for that day, for the first sort of pre-admission day, it was a lovely experience in lots of ways. The difficulties were getting there, transport getting there was a disaster. It took us as long to get there as it took somebody to get there from Sheffield which bearing in mind it is only 20 miles, you raised your eyebrows somewhat. Anyway, so that was a difficult issue.  

When we were there we had one nurse looking after us all the day, along with another family, well father and daughter and she was going to have a very similar operation to Miriam. And he was a doctor as well, funnily enough, so we chatted to them, which was good. The only other family that we'd come across in any depth was [my husband's] godson so another family, it was good to have some conversations with them. We were looked after by this one nurse and taken to various places and had various tests done and taken to intensive care. And when we went to intensive care it wasn't a matter of wash your hands here, leave your baby there, please don't make any noise. 

It was come on in all of you, bring the pram, bring everything. Yes wash your hands here. Come in, you're very welcome, this is where Miriam will be. We don't know which bed, these are the nurses, this is where they are, this is how you get in. And to be shown those things in a relatively stress-free moment was lovely. So it wasn't a matter of right, she's in theatre now, now we're going to show you when you're feeling very vulnerable and you won't even remember anything anyway. So that was very good and I would certainly recommend that people got that, to go and see the intensive care and go and see where your child is going to be. That was very well done from our point of view. 

With a planned operation, the child is often admitted to the hospital on the day before or spends the day in the outpatients department having tests.. One couple remembered that day, when they were kept busy with meeting the anesthetist, the surgeon, the nurses and other members of the team.

Parents who visited the intensive care ward before their child's operation said this made the shock of seeing their child in intensive care easier to deal with. One couple who preferred not to see the ward beforehand were shown pictures instead. 

Before surgery, children need various blood tests. A few parents and their children had found this distressing. One couple always asked for their son to be sedated first.

Various other tests such as nasal and mouth swabs to test for infection, an ECG and chest x-ray may be done before the operation.

On the morning of the operation, children are not allowed to eat anything. One mother said it had been difficult waiting for the operation time and coping with a fretful, hungry baby. 

Parents must consent to surgery and intervention procedures before their child's operation. Before having to sign, parents should be told by a senior member of the team of the potential complications and risks of the surgery and also the risks of not having the operation. One mother describes her feelings about consenting to their daughter's operation. Another couple describe being told the risks of their son's operation before signing the consent form. Although legally parents have to be informed of the risks of their child's operation, a few parents said that this information had frightened them and they would have preferred not to have known.

 

Describes being told the risks of their son's operation and signing the consent form.

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Age at interview: 3
Sex: Male
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Mother' Another horrible thing is when the anaesthetist comes to ask for you to sign a consent form he has by law to tell you all the things that could go wrong. So he says there's 1% risk of stroke, 1% risk of this. There could be organ damage, there could be this, there could be that. And you're sitting there going 'Ohhh'. You know. And I know 1%, you know, isn't very much but, you know, as nice as he was you sort of, after you've signed, I mean what's your alternative, that you don't sign a form?  After he walked away you'd sort of go 'Ohhh' you know and you would have all that going through your mind all the time.

Father' But again you, once you've signed the form and you've handed him over sort of thing you, it's [Mother' Well it's] down to the surgeons then, you know, and there's nothing you can do - is there? - but just wait.

 
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Explains making the decision to consent to their daughter's operation.

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Sex: Female
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And with surgery, it, again it was hard because you, it was hard on one level because you have got this lovely healthy baby and you're putting them through a procedure, which has got risk and pain and everything attached to it, but on the other hand the alternatives are worse. I mean, I want her to grow up and have every opportunity in life and to have a normal, you know, life expectancy and things you know and I certainly couldn't have, you know, put any alternative on her whereby she wouldn't have those opportunities because, you know, either in adolescence or as a young woman she would have terrible you know, heart failure and respiratory problems because of her defect not having been fixed. So it was, at one level it was an easy decision because there was no alternative but it, you still feel bad about putting her through this operation.

So for us, the important thing was to optimise the time at which she had it and that's the kind of control you have, and so we took advice on that from, you know, different people that, you know, although you want to have it as soon as possible we recognised that she was much safer waiting until she was over one because then the risks for the operation are, are much smaller because she's bigger and can take an operation much better. And so you handle that difficult decision by I think optimising the things that you do have control over, you know, which are the timing and things.

On the day of the operation both parents are able to go to the anaesthetic room with their child. Handing their child over to the anesthetist was traumatic for some parents. Sometimes this role was taken by one parent when the other found it too upsetting. One father said he found taking his daughter to the anesthetists room rewarding because he was able to meet the surgeon and anaesthetist again.

 

He found taking his daughter to the anesthetists room rewarding because he was able to meet the...

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Father' But you, you get to take your child down to...

Mother' Yeah you can....

Father' The, the operation and, and go in while they sedate them and I did that on the VSD and from what I thought was going to be a horrible experience of, of almost letting your child go was actually a really rewarding experience because all of a sudden there was faces to the anaesthetists, there was faces to the surgeon. You know, although we'd met them before there wasn't this big faceless sort of void that, where you give your child over and hopefully get it back.

Mother' That's what happened in the first operation [Father' Yeah] where she was so desperately ill they just wheeled her away [Father' Yeah]. We didn't get to carry her, she was too ill.

Father' And, and I would advise anybody to, to go down to, you know, and be with them while they're being sedated because it's not a, a particularly nasty thing to look at [Mother' Hmmm] or anything like that. Is it?

When a child is older and more aware of what is happening it can be even harder for parents. One mother describes taking their toddler to the anaesthetic room for her operation and how they made it a less traumatic experience for her.

 
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Describes taking their toddler to the anaesthetic room for her operation and how they were able...

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Age at interview: 3
Sex: Male
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After she went into, the anaesthetic room is, actually, quite a poignant moment for us.

We'd been discussing whether we would both go in or one of us goes in or quite how we do it and I don't really like anaesthetic rooms. [My husband] did the first 2 operations with her but as soon as she got into a situation of wanting, of asking for us, I then said I don't think I can do that. I don't think I can give her to you to take in when she's crying Mummy. It just pulls too many heartstrings. It probably doesn't make any difference in the long run of things but I didn't feel I could do it. So I said I think I need to go with her if she's saying that. Fortunately they let both of us go in so it wasn't an issue. And so we both went into the anaesthetic room and the registrar who'd been up to see us on the ward then said 'if you could lie her on the bed' at which point I, to be perfectly honest, I panicked because I thought there is no way, I mean she is already crying and grabbing on to me. There is absolutely no way you're going to get her lying on that bad without a real scene.  

She wasn't quite into tantrums at that point but I thought we were pretty close. She knew what was going to happen, she's been through enough operations recently enough that she knows. And so at that point I was sat on a stool and I said 'well last time' which wasn't that long beforehand, 'last time they did it while she was in my arms' at which point a consultant walked through the door and said 'in that case we'll do it that way this time as well'. And just walked over and completely took over the situation and she was put out whilst I was holding on to her which was much, much kinder. I mean it was hard enough as it was, she was crying and she hated it and she was trying to pull the thing off and kicking and all the rest of it. Yes, but for somebody to come and take control of the situation when everybody was losing it was lovely.  

So we then, I put her down on the bed and I left. My husband then found it very hard to leave, it obviously just hit him at that moment and they were trying to anaesthetise her and put... and he was still trying to hold on to her and kiss her. I think he found that very hard, leaving her. He didn't get in the way, it was only probably a few seconds but he obviously felt it and I felt him feel it at that point. And then we left and went back to the ward, then went to intensive care again just to remind ourselves at that point. 

During their child's operation, parents should be given a pager so that they can be contacted if they want to leave the hospital. Parents stayed in the parent accommodation, went to the chapel to pray, went shopping, or for a walk or visited a museum.

One couple had found it useful to have some time away from the hospital with their other child. Another mother had found it a distraction to go clothes shopping. Many could not concentrate and just waited for the time to go by. One couple whose child's operation had previously been cancelled describe their relief that the operation was finally happening and would soon be over.

 

They felt relieved when their son was having his surgery because it would soon be over.

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Age at interview: 4
Sex: Male
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Mother' As we walked back round our surgeon was stood there like this, wasn't he, with his hat on, big beam on his face 'Sorry, sorry it took so long. We'll look after him now' like it was, you're just dropping your child off into the nursery. And that to me was fine, absolutely fine. Because I knew he would be fine. I don't know where I, people talk about strengths, they really talk about strengths and where it comes from and I don't know but we then went outside in the hot sunshine, made the calls that everybody who'd been ringing up all day, 'Is he in? When's he coming out? What's happening?'  

Father' Cos everyone else thought he'd had [Mother' That it'd been done] the operation actually and he was finished [Mother' 'No he's just gone in']. So, yeah.

Mother' And I know that I, we then went, we'd not drunk we went to the pub to have some sort of meal and we.

Father'  We were actually quite relieved and, 'cos we [Mother' Cos it was over] could relax [Mother' It was over] it was the most relaxed we'd felt since, probably since we'd been told about it to be honest. I mean I was [um], it was just a case of 'Well, whatever's going to happen is going to happen now' and it'd be over in an hour, wasn't it? Or. [Mother' Well it was...] it wasn't.

Mother' It was 2 3/4 hours. He came out, he came out about half past six. He was out by the time we got back to the hospital and we saw him at half past seven. [Father' Yeah]  But that was, in the end it was very quick but, but the day, what they tell you the day before when you go in is that the day of the operation is going to be long because there are other patients to be seen and so on and so forth. And it takes a long time.

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

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Age at interview: 5
Sex: Male
Age at diagnosis: 2
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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.

Sometimes operations take longer than expected. One couple advises other parents to be prepared for this. How long the operation takes depends on the type of surgery and whether complications occur. One couple describe their experience of their son's cardiac catheterisation. A mother of a child with pulmonary stenosis describes their experience of the balloon catheter operation.

 

When their son was having his operation they went to the nearby museum. They advise other parents...

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Age at interview: 3
Sex: Male
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Father'  I know that when he was in surgery we went to, just for something to do, we went to the Natural History Museum and we walked around there, oh I don't even remember doing it. You know? I can remember approaching the building but I can't in all honesty remember walking around, can you?

Mother' It was a bit surreal because they told us that sort of they would spend the first hour of his operation literally just getting all the tubes and things in place perhaps for after the operation, you know all the things to put drugs in and whatever and you sort of, and I mean we walked round like this, didn't we? [Father'  Hmm] You know, looking at our watches all the time and just sort of, I don't know, I mean we could have sat on the ward but  [Father' No] I just couldn't bear doing nothing. I had to do something  [Father' Yeah] that was...

Father'  It was anything to occupy the time, wasn't it?  

Mother' Hmm. We was just wandering around in a daze really.  

Father'  Yeah.

Mother' And it's very weird to, looking at your watch all the time and try and imagine what's going on. 'Who are these people leading perfectly normal lives or on holidays or whatever?'  And, you know, somewhere half a mile away [Father'  Hmm] you, your little 6-month baby has got his chest cut open [Father'  And it's] you know.

Father'  It's only a very, very small thing but it's not always a good idea to ask how long it's going to take because if you come back as other people had done and the child was still down in surgery then straight away you'd think something's wrong  [Mother' Hmm] you know. 'What's wrong, why is it taking so long?' So I would say to anybody that's going to go through similar, don't ask how long its going to take because if, if you come back from, as we did, sort of if you come back and he's not back from surgery then you straight away, you put yourself under pressure again thinking 'Why not?' you know 'What's gone wrong?'  

Mother' Well what they did they took, the nurse took our mobile phone number and said that she would give us a ring, you know, if we needed to come back.  

Father'  And that's the best thing.

Mother'  Which I suppose I think, yeah.

Father'  Yeah, just accept that it's going to take [M' Yeah] however long it takes, you know.

 
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Describe what happens when their son had a cardiac catheterisation.

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Age at interview: 5
Sex: Male
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Mother'  Well, obviously, you go in to the hospital. They, they get the, your child all sort of prepared and things and then they take you to the, the theatre. You've to sign a consent form. Then you go in with your child into theatre until they anaesthetise him. And then they take over. Basically that's all we know. We know that they put a camera into the groin and up through the vein into the heart and that is how they do a cardiac cath. But apart from that we don't know anything else about it. They, they explain to you what they're doing. It's a big full detailed x-ray that's the only way they can have a look inside.

Father'  And they did explain that there is a risk as well.  

Mother'  Yes, there was, there's a risk with all the operations.

Father' Yeah, all operations. I mean, it doesn't matter if you're a heart patient or any patient, there's always a risk.  

Mother'  Yeah. I mean basically you're there until the, the children go to sleep and they go through the operation then you're, [Father' Then you...] you're there when they bring them back.

Father'  Then you have a cry.

Mother'  Then you have a good cry [Father'  Yeah] you think of them coming back to you. But that's about it, it's a big detailed x-ray that goes up, that, that uses a vein that goes from the groin to the heart and that's how they do it. And they run little tests and take little samples sometimes when they're there and'

Father'  Basically the next day he's fine.

Mother'  Yeah, they keep them in, they keep the children in overnight'

Father'  Just for, to monitor them. And next day they get home.

Mother'  And then you get home.  

Father' Before you know it they're running about again.

 
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A mother of a child with pulmonary stenosis describes their experience of their daughter's...

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Age at interview: 5
Sex: Male
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We had, as soon as we got the appointment to go back to see the consultant, he told us, she would need an operation on her heart and that it would be a balloon catheter operation because the valve between the heart and the lungs wasn't fully open and it would need extending to help her heart perform properly and we were told we'd have to go all the way to [the specialist] hospital from Cornwall which is a long, long way and there's no motor, not much motorway and she was, we went into hospital in [a town in Hampshire] when she was six, only six weeks old. And we were very anxious because she was gonna have anaesthetic for one thing, plus the risk of the operation. But they were marvellous in the hospital. I can't praise them enough. The nurses and the consultants and the anaesthetist and everybody spoke to us and assured us they'd done this operation and it was a 100% success rate. But you still have those doubts and I can remember the two hours while she was in surgery were the longest we ever experienced, waiting and waiting and hoping that it'd all gone all right and fortunately the operation was successful.  

Well there's no scar, they don't operate actually on the heart. She's got a little scar at the top of her leg, only a tiny one and they go through the vein from, from the leg. They go through the vein into the heart valve and then they inflate the balloon in the valve to, to stretch it, to make it wider so that the blood can get through. And, so don't be concerned thinking 'Oh she's going to have a big scar on her chest' 'cos, or he or she nowadays wouldn't have a big scar. She's got the most minute little scar at the top of her leg which no-one will ever see, on the inside of her leg. About a centimetre.

And her recovery time from that operation, how long was she in hospital for?

Only another couple of days after the operation then she could come home. 

I think if any parent does have a child with a similar diagnosis as Eleanor to have great faith in what the doctors can do nowadays. They can do so much more with modern technology and, and things. But try not to be too worried and have confidence in the doctors. That everything should be all right for a balloon catheter operation. And the after effects are minimal. There's no after effects. And they don't have to stay on drugs for the rest of their lives which is good.

Did she have any after effects?

No, no.

She came out of hospital 2 days after?

Yes, yes.

The hospital informed parents when the operation was over and the surgeon talked to them about the outcome of their child's operation. They were asked to wait in a room outside intensive care for about half an hour to an hour while their child was prepared, and the various drips, drains and tubes were attached but after this they could be with their child as much as they liked.

Children's heart surgery in the UK has recently been reviewed. Children and parents may have to travel further because of a concentration of expertise into a smaller number of centres (see NHS specialist services).

For information on national survival rates of congenital heart disease operations see Central Cardiac Audit Database.


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Last reviewed July 2018.

Last updated July 2018.

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