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Parents of children with congenital heart disease

Follow-up appointments for congenital heart disease

For parents of a child with congenital heart disease who may have had major surgery, leaving the safe environment of the hospital can be very frightening. When parents leave hospital with their child it should be made very clear who they should contact if they are concerned about their child's health.

In our experience, parents had been able to telephone the ward or the cardiac liaison nurse at any time for advice about their child's health and could take their child to the ward to be checked over if they were concerned. Many parents had had occasion to telephone the ward and said they had felt very reassured and were never made to feel that they were wasting the doctors' time, which was very important to them.

 

Comments that the hospital have always been available to speak to her when she had concerns about...

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Age at interview: 3
Sex: Male
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The hospital always, always talk to me. When Alex was very small, if she had a bad day feeding I would phone the hospital up. They would listen to me and they would, a sister-in-charge would talk to me, so that was always accessible and I feel it still is now. Although I haven't needed it, when I last went last week the consultant said 'If you are worried about Alex in any way, bring her back to us. We will see her at any time'.

Which is fantastic. And, you know, I haven't had to as yet but it's very nice to know that it, it's there available. At the end of the day my local hospital, my local GP, they don't know whether there's anything wrong with Alex's heart because only a scan where you can actually look at it will tell you that. And the nearest scanning machine is in the specialist hospital.

Children with congenital heart defects are normally followed up for many years in a specialist paediatric cardiology department. The frequency of these outpatient appointments varies according to the child's treatment plan and progress.

Follow-up appointments generally involve a weight and height check, listening to the heart and chest, blood pressure and oxygen saturations check, an ECG and sometimes an echocardiogram. These appointments also offer parents a chance to talk about what is happening with their child, to ask questions and to discuss any particular problems they have experienced.

Parents much appreciated the efforts made by the hospitals to make the clinic a cheerful reassuring place that their child would enjoy visiting. Though most parents returned to the children's heart hospital for their child's follow-up, some families who lived far away were seen at an outreach clinic at their local hospital. One couple who had weekly appointments for three months after their son's operation, could be seen on the ward round on a Sunday rather than in the clinic, because both parents were working.

One child attended monthly follow-up appointments at the pacemaker clinic; her mother describes what this involved. Another mother, whose son has bradycardia, described how for his check-ups he had to have an electro-cardiograph tape fitted to monitor his heartbeat during normal activities at home or at school over a 24-hour period.

 

Describes how her daughter's pacemaker was checked at follow-up appointments at the pacemaker...

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Age at interview: 5
Sex: Male
Age at diagnosis: 2
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The other thing is that we have to go to the specialist hospital for regular check ups. There's nothing really up in the area here. She's 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.
 

The frequency of follow-up appointments varied depending on the child's needs. Some children were being seen regularly to decide the right moment to have a corrective operation. Sometimes check-ups show the need for further treatment or changes to predicted treatment. Children whose condition was more stable might have some appointments with the paediatrician at their local hospital. This had the advantage of ensuring that the local hospital had details of the child's case.

 

Describes the combination of follow-up care that is available for her seven year old son.

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Age at interview: 7
Sex: Male
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Then we had to go back to the hospital once a month for check ups. Then they put it back to once every 3 months and then they told us we didn't have to come back for a whole year, which was, which was quite staggering and a little bit scary because I couldn't imagine not going to the hospital for a year. But we always knew that they were there at the end of a phone if we needed them and also we could go at any time if we felt it were appropriate.  

We also started seeing, because we lived so far away from the hospital, we started having 6 monthly visits to the paediatrician at our local district hospital, just to keep him in touch with what was gong on with Thomas so that if Thomas were admitted to the local hospital at any time they would have a complete, the up to date picture of what was going on with him. And we still do that now.

One couple whose toddler has Wolff-Parkinson-White syndrome was seen monthly at both his local hospital and the specialist hospital. A child with pulmonary stenosis had six-monthly check-ups at the specialist hospital for the first 2 years of her life but later needed only 2-yearly follow-up appointments.

One mother who had to travel by plane to the specialist hospital for her child's follow-up appointments always asked to be seen by their own consultant, even though it meant waiting a bit longer, because it meant she went away completely happy.

Parents felt reassured that their child was having regular check-ups though some felt nervous beforehand. Others saw it as a routine appointment and were not too concerned. A few commented that follow-up appointments had got easier as they knew what to expect.

 

Follow-up appointments remind them of what their son has gone through and his mother says she...

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Age at interview: 1
Sex: Male
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Father' it's funny because they, you know, Josh's operation, I mean, you can't, we can't thank people enough for it. You know, what's, what's actually, you know what it has actually meant. But you do, I think, it's when you go back to the hospital, when you've got to keep going back to the hospital it's almost like a, a remembrance. [Mother' Yes] It just serves as a reminder of what Josh has been through and you go through'

Mother' I don't, I get very nervous when he goes back for his check, check ups at the hospital where he had his heart op. I do get nervous before that. And I hate, and when he has his echo it's like, [my husband's] always the one that's sort of looking after him and, and, it's like, I don't, I find I just want to be, detach myself from it somehow. But, it's so far so good they've been fine thankfully '

Father' I think you just sort of think, well, it's almost like in the, the, you know, it's like an admittance of something actually happened, like something actually, you know, and you just, you just want to carry on with your life and '

 
Mother' Yes, you just want to put it behind you and not have to think about it any, any more. And like I say it's just the reminder of what he's been through.

Father' So I mean, the thing is again, you know, you, you were told, we were told at, right it's going to be 6 months the next time you visit and hopefully the time after that it might be well okay 12 months.

 

Comments that follow-up appointments have got easier with time.

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Age at interview: 7
Sex: Male
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The first few times when you have a new baby and you don't know your way around and it all seems very cold and overwhelming and very distressing were hard.  And now if I ever see a mother who's obviously in that state I try to reassure her and say 'Look, you know, here's my son, it'll be fine, you'll be OK' Because it is just all overwhelming and it just made it so much easier to know the routine the next time one went back and what was going to happen. And then after a while it just becomes a pattern, it's very reassuring.  

It does get easier with time.

Yeah, yeah you know I mean you know to book the first appointment and it's not going to, you're not going to see anybody for a good, an hour so bring a book and play and get all the testing done first so that you can be the first one through.

At follow-up appointments parents could also meet or talk to other parents and children with congenital heart defects, which many had found supportive. One couple explain that it helped to see other parents and children at follow-up appointments; a little boy impressed them by proudly showing everybody his scar.

 

They found it supportive to talk to other parents and see other children at follow-up...

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Age at interview: 3
Sex: Male
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Mother' Even in the outpatients when we went up for outpatients you'd get chatting to people, wouldn't you? [Father' Hmm], and I can remember, I can still remember this 3 year old boy who the parents said, yeah he had heart surgery and whatever and whatever his name was, I don't know what it was, he was wearing a yellow Pokemon T-shirt, do you remember? And they said 'Show them your scar' and he went 'Hmm, look at this.'

Father' And he was so proud, you know, he was showing everybody his scar.

Mother' No, and it was, that was fab, so'

Father' So it wasn't something that should be hidden. He was [Mother' Hmm] you know, he's special, he's got a [Mother' Hmm] scar that nobody else has got. Well, obviously others do have but this, this boy had been made to feel proud, you know, that he, he's got a nice scar and he, he was showing everybody, wasn't he?

Mother' Hmm, so really they, that was the best support we got, when you, you're in hospital and the other parents we did actually swap phone numbers with a couple of them but just never got round to, to phoning, you know. 

A few parents who had spent a long time in hospital with their child found going back there strange, but felt comfortable because they knew so many people there. Others, whose children were well, said that outpatient appointments reminded them of their child's heart condition and of their painful feelings when their child was having surgery.

Several parents said that their child didn't seem to mind having tests and examinations and they were comfortable in the hospital environment. Others said that occasionally their baby or toddler became a bit clingy at hospital appointments. One couple had found it difficult keeping their baby still for his ECG. Another mother explains that her daughter was happy to be at the hospital for her follow-up appointments but when she was two years old she found it hard to keep still for the echocardiogram. Many tried to make hospital appointments fun for their child (see 'Talking to your child about their heart').

 
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Explain that their baby daughter doesn't get too upset by tests and examinations but it has...

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Sex: Male
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Father' She's fine, she recognises people that we know. It's, it's quite a finite group of specialists actually that she sees and she recognises them all and smiles at, at the ones she likes and doesn't smile at the ones she doesn't like. It's, it's just, it's just a normal child again. She likes some people and she doesn't like others. Or she responds better to some people.

Mother' She remembers what, what some people have done to her.

Father' Yeah.

But when she's having tests now how is she?

Mother' It's not as easy because she's a bit more mobile. So when she used to have ECGs and she just used to lie there and all her echoes and she just used to lie and let them carry on with it. Now she's trying to help and pull leads off, pull wires off and it's when you have to have things done two or three times because she's pulled something off that she shouldn't do and she knows she's done it. But she's a bit of a cheeky madam.

Father' But she doesn't get too upset about it, which is good. She's got quite used to it, used to being sort of handled and ..

Mother' It's just been part of her life really. She's grown up knowing that she has to have things done and that she just responds to the situation as it arises. You know she has her, her grumpy days when she doesn't want to be touched.

Father' She's a surprisingly contented baby considering what's she's gone through.  

 
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Explains that her two year old daughter was okay about being at the hospital outpatients but she...

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Sex: Female
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It'd be interesting because we've got another one in a month's time so. I think now she probably will be a bit better but at the last one that she went to, I don't think it was the hospital, this time, I don't think she had any recollection of the hospital at the last time that we went. She was fine about going in and in fact because it's the children's hospital it's got lots of toys, lots of things that are really exciting. She was quite happy about being there and being in the outpatients but she didn't like having the echo done. She was, you know, even though they do lots of things to distract them and they have sort of slides on the ceiling for them to watch and things she didn't want to lie down and she didn't want to keep still and she was, it was very hard to get her to have the examination done but I think now, that was nearly a year ago. I think now knowing how she is and I think she'll be fine actually this time, I think. You know, take a good book or one of her dollies she'll be alright about it I think. She's just a lot more sensible about it. Something about two, two year old's where they're not very sensible whereas somehow at 3 1/2 they're a lot more chilled out.
 

They try to make follow-up appointments fun when the whole family go for check-ups for...

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Age at interview: 8
Sex: Male
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He's never really had any great issues surrounding the check ups. You know, I guess we try our hardest to not let him know that we're nervous or that it's upsetting for us. We try to make it just kind of like a routine thing and try and make it fun and you know I have two other children who, who also go because they have to be screened as well up until they're young adults because it can develop at really any, it can develop at any age but it usually develops, you know, in adolescence as I said. So it's kind of like a family, a big family ordeal. You know, we all go and they get checked and, and then we see the consultant and we just try to, try our hardest to make it fun and not too serious.


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Last reviewed July 2018.

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