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Parents of children with congenital heart disease

Pacemakers

The heart has its own 'natural' pacemaker. A group of cells on the right side of the heart transmit regular electrical impulses across the two atria. The heart needs these electric signals to make it beat.

Some children are born with an arrhythmia, when the heart beat is irregular, or too slow (for example, bradycardia). Sometimes children develop an arrhythmia as a result of heart surgery because the pathway along which the electric signals travel has become blocked or damaged. To help maintain a steady, regular heartbeat an artificial pacemaker is implanted. This is a small battery and tiny computer which is usually placed in the chest wall or abdomen, just under the skin. 

We interviewed two mothers whose children had a pacemaker.

One seven-year-old boy, who had bradycardia (a slow heart beat) since birth, had a pacemaker implanted when he was nearly seven because his heart beat had become increasingly slow as he got older.

His mother describes what her son's operation and recovery was like. He was ready to return to school three days after his operation and his return was delayed a bit longer because the school worried about infections until his stitches were removed. Three months after the operation he was adjusting to having a pacemaker, but felt quite nervous about getting knocked or kicked during football or in the playground, and felt conscious of where it was in his body. She says he is a completely different child since his operation. Whereas before he was a reluctant sportsman, he now has lots of energy and went skiing for the first time 3 weeks after his operation.

 

Describes what her son's pacemaker operation and recovery was like.

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Age at interview: 7
Sex: Male
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The procedure, as I say, was to, to do a catheter first and then to, having determined exactly what was going on electrically, to implant a pacemaker. The operation took 3 hours. Or the whole procedure took 3 hours, which was an hour and a bit longer than they had told us it would be. It's a tense time, you're sitting there in, in, in the dark in the ward with every thing else going on around you but not knowing quite what was happening with your child. And, and then suddenly there they are back up. Groggy and fine, he, he'd had an operation at about five, well he came up at about five thirty. He responds to anaesthetic by being quite nauseous for the first few [hours] and so he kept throwing up which wasn't pleasant. And about nine thirty in the evening he was sent down to have another x-ray to check that there wasn't water on the lungs and he decided he was strong enough to walk himself down which was quite something. So we walked down and there were three men in there, well actually I suppose I don't know how old they were but they looked like they were quite ill and elderly sitting in their pyjamas in wheelchairs. One of them was too unwell to have a pacemaker and the other two had had pacemakers and the four of them all sat looking at each other and just sort of disbelief that there was this little child who'd just had a pacemaker put in. And he of course thinks that that's the age you have a pacemaker put in. So he was a bit surprised to see all these men. He didn't, he, he found that was exhausting and we had to get a wheelchair to take him back up afterwards.  

And he had, he, he still couldn't settle his stomach so in the end we had to give him intravenously anti-nausea drugs. And I was asleep on the floor, dozing on the floor by his cot and at about 6.30 in the morning in a room with two, two or three babies in cots and then older children as well, I heard him stir and I could feel that he'd come through. And in fact he leapt off the bed or climbed down from the bed and came down and said 'Come on mummy, let's go'. And I said '[son's name], everybody else is asleep, we don't want to wake them all up. So we'll have to, I'll have to read to you. So we'll have to cuddle up on the bed and just read to each other quietly until it's time to get up'.  

And when the consultant did her ward round at lunch time I said 'What do we have to do to leave?' So within 24 hours we were at home having had a clear x-ray that afternoon.  

And his recovery period after that, what was that like?

Well I asked them when he could go back to school. The operation had been on a Thursday, on a Friday, sorry, and they said well he could go back on Monday if the school are happy with it. But the school were not happy with it. The school were concerned that until the stitches were out there was a danger of infection or being knocked and they didn't want to take that responsibility. So he went back to school 10 days after the operation when the stitches had been taken out by our GP. In a, it was painless. And he's kept them in a bottle and he proudly shows people what his stitches look like. 

 

Describes the physical improvements in her son's health following his pacemaker operation.

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Age at interview: 7
Sex: Male
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He has always avoided anything involving stamina. So he was a reluctant sportsman. He wouldn't, he wouldn't really join in football games. I started an after school football club on Friday after school and just let them play in the park to encourage him to play with other children. But he'd be up the far field climbing a tree rather than joining in and he, he, now he has the energy to run around after his friends and do it, so it's, it's improved his quality of life enormously. He went skiing within 3 weeks of having the pacemaker operation for the first time in his life. And he certainly couldn't have done that before the operation.  

So to see a child afterwards have energy and as I say pink cheeks and big eyes whether he's, was a normal boy and very active and not paying attention and not concentrating and whether turning 7 has changed that or whether it's the pacemaker he's, just he's concentrating. He's just a whole new boy. Cycling all over the place, just living life to the full.

 

A 5-year-old girl had a pacemaker implanted when she was two-and a-half, after she had collapsed and needed to be resuscitated due to post operative complications after corrective cardiac surgery. She only has the pacemaker as a backup in case her heart rate drops suddenly. Her mother explains that the pacemaker makes no difference to her daily life and has little effect on what her daughter can do. Before they left hospital, the family were shown a video about pacemakers for children which they found reassuring and helpful.

 
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Describes how she felt about her daughter having a pacemaker implanted.

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Age at interview: 5
Sex: Male
Age at diagnosis: 2
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They did actually say to us before the, she had the surgery that there maybe a complication and she may need a pacemaker. So we had sort of previously been warned about it but they, they really sort of weren't quite sure what, what was going wrong. So they felt that they, they connected her to this pacemaker. So they connected her to the pacemaker and it was on a setting that would only come on if the heart rate dropped again. And they, so that they could see if she needed it or not. So it wasn't set on all the time, it was just set at a setting that if she needed it, if her heart rate dropped it would come on again.  

So that night, through the night she needed the toilet and got on her little potty and things and she was in a little bit of a state and things 'cos she wouldn't sit on the potty, she wanted to get up to the toilet. And she couldn't 'cos she was connected to all the machines and things. And again her heart rate dropped again. And the, the pacemaker clicked in for her and brought her heart rate back up again. 

So they decided on the Sunday morning that she needed a pacemaker fitted as a back up really. She wouldn't need it all the time but it was there in case her heart rate did drop again. And for me it was 'Yeah, do it. Get it in now' you know. I know she was going through surgery again it was going to be a minor op, a, minor to what she'd had operation. I knew it was about an hour or something the procedure was going to take but I just wanted it done. I just wanted the pacemaker in so that it wouldn't happen again and she wouldn't, her, her heart rate wouldn't drop again.

So very quickly it was just in a matter of hours she was back into theatre again on the Sat, on the Sunday. 

So she went into theatre and it was no time at all really. She was cut open again where they put the pacemaker in and cut open again into her chest where she's been opened previously to put the, the wires in to connect it to the heart. But for me, I know I was putting her through surgery again but it was just a relief, I just didn't want anything to happen to her. She came so close to death that day and I just, I just knew, know it had to, it had to be fitted. Whether it was going to happen again or not, you know, I wanted that pacemaker for her.  

 

Explains that the pacemaker her daughter has, which is used as a back up if her heartbeat becomes...

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Age at interview: 5
Sex: Male
Age at diagnosis: 2
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In terms of her daily life of having a pacemaker there is absolutely no difference to it at all, nothing. I think there's a handful of things that she can't do which is like bungee jumping and things like that, things that she probably wouldn't be doing anyway. Mobile phones, that's something else, just to be careful with the usage of mobile phones, that she's using it in the opposite side from where her pacemaker is. Sort of going on holiday, things like that, sort of, you know, going through the scanning things at the airport and, but you're given a card and that just says that she is the wearer of a pacemaker and you just show that and there's, you know, there's no problems and things with that.  

So you would never know. I forget about it, you know. And she calls it 'Pacey' so it's, you know, you normally say to her 'What's Pacey doing today?' and she'll say he's sleeping.  So, you know, it's, it's a joke, you know and that, you know, we have fun about it, not jokes, we have fun about it and, you know, we, we speak about it now and again. You know, 'What's he doing?' or, or if she's really upset about something or throwing a temper tantrum or something I might say something like 'You'll get Pacey, you know, he'll have to start working' or whatever, you know. So, but, no, it makes no difference and you, you can feel it. It's just, it's, it's really very, very small, it's one of the smallest pacemakers in the world that she has, well is actually the smallest one in the world that she has. 

It's fitted down, down at the bottom at the sort of the left hand side of her body and if you put your, she's got a small scar obviously where they inserted it and you can feel, you can just sort of, if you put your hand round, round her tummy there you can feel the shape of it. It's not actually in her, in a small little bag like a, like a, a, just a little material bag and it just staves any allergy or anything to her body because metal against her body, it's in a little bag. And she was very fortunate to have that done I think there was somebody in, in theatre before her had an allergy and they'd bought these bags in specially, these little net bags in specially to put pacemaker in. So because they'd fitted this child with one they just decided that they were going to put [my daughters] in one too. So she's, not everybody's got that but it's in a, it's in a little bag. But it makes no difference to her life at all.

 
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Explains that the whole family had found it reassuring to watch a video about pacemakers for...

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Age at interview: 5
Sex: Male
Age at diagnosis: 2
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The staff were absolutely tremendous. They talked it through with [my elder daughter], they showed her a video, we got to see a video as a family all about pacemakers and about children that had pacemakers fitted and how it didn't make a difference to their life and things like that and that was a great support, it really was a great support to look, the whole family not just [my elder daughter]. And it was reassurance for [my elder daughter] as well that that wouldn't happen again. That episode wouldn't happen again because she had a pacemaker and if her heart rate changed the pacemaker would click in for her. So that was, that was a relief. 

Both parents mentioned that having a pacemaker affected certain situations. They had been advised that their child should not take part in violent activities such as bungee-jumping or going on dodgems. And they were aware that they might set off alarms in the kind of electronic scanners used in airports. They were given a card to carry to explain this in awkward situations.


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Last reviewed July 2018.

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