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Parents of children with congenital heart disease

Medication for congenital heart disease

Some children needed no medication or only took medicines for a short time after an operation. Others were taking medicines for several months or years. Some were on lifelong warfarin. A few also took medicine because of other problems, such as asthma, immunity problems or epilepsy.

Several parents mentioned that giving medicine to their newborn baby when they first came home from hospital had been a daunting experience but it had soon become routine. Some worked out a strict schedule. One couple recalled that they had once mistakenly given their daughter the wrong medicine. Another couple had designed a chart to record when medicine had been given.

 

Describe how once they gave their daughter the wrong medicine by mistake.

Describe how once they gave their daughter the wrong medicine by mistake.

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Mother' When she first came home from hospital, she was on a lot of medications for various different things to do with her heart problem. And it's a bit of a trauma at first isn't it. It's just like she was on six syringes in the morning, and in the afternoon, and teatime. It was like do this, do that and do the other. Which I didn't find  too bad, I mean, when she was a baby, she used to not like the syringes at all, but she's seems OK with them now. 

Father' She's older now. I think she realises that it doesn't matter how much she'll moan and kick or whatever, she has to have them, and then now she just takes... I think she's realised the quicker she has it the quicker it's done and gets over it.  

Mother' We've had a couple of traumas haven't we, which we will be honest about. Some of her medications were in very, very similar bottles, and you know we, her medicines got administered the same, she had the same one instead of different ones.  It was like such a trauma, what [are] we going to do. We phoned the hospital, and they said, don't panic, bring her up we'll keep an eye on her and things like that. It's like well, life's difficult as it is, you know, but it doesn't matter how much you try, these things happen and they tell us that this is normal, don't stress yourself out don't feel so guilty about doing it, it's just one of those things. She's on that much medicine, but it happens, and I'm sure it'll happen again. But you know, she's not on so much now is she. It's nice.

Father'  I think it's all about organising yourself. When you first sort of get home and there's all these medicines it's quite daunting. 

Mother' It is.

Father'  And you're sort of right, this is what we'll do. And you sort of eventually, it's just like, it's second nature to pick up syringes, fill them up and give them your daughter. Although I mean like I suppose with most children when they come out of hospital we had quite a bit of medicine. But as they go back into outpatients and they slowly reduce and it gets easier.

 

They designed a chart to record when they had given medicine to their newborn baby.

They designed a chart to record when they had given medicine to their newborn baby.

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I think once you get into a routine and once you sort of get disciplined to do it, it's fine. At first it's quite difficult because you think 'Oh crikey, when do I give him the next lot?' and it's, it's quite hard to get into that routine while once your in it it's OK. And you know that's why we did ourselves a little chart that we tick off when we've done things and especially when there's two of you looking after him, say at weekends, it's like you know, have you done the morning drugs or have you done the afternoon drugs, it's quite a good way of doing things. And the other thing is that when sometimes when he has a hospital review or we've gone in because there's some sort of problem then some of the medication'll be changed and so it's quite hard to, you know, to remember the new dosage or the different, you know, the different sort number of times in a day to give things. But knowing that that's absolutely crucial for him, that you give him the medication sort or, that makes you think 'OK, right I'm going to be disciplined about this. This is how we're going to do it'. And so we associate it with his feeding times. That's out way of, of doing it 'cos he has quite regimented feeding times so we sort of put the medication with that. 

One mother describes some of the ways they overcame problems with medicines and that now her child is 3 she tries not to let medicine take over their daily life. Some mothers whose babies were being fed by naso-gastric tube found medicine easier to give through that.

 

Tell how they overcame problems giving medicine to their baby - and that now she is 3 they don't...

Tell how they overcame problems giving medicine to their baby - and that now she is 3 they don't...

Age at interview: 3
Sex: Male
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We started to make two bottles up for her feed and in one bottle we'd put an ounce of milk and the medication and then if she didn't finish the rest of the feed it didn't matter, she'd had her medication first. And, but then we just plan now around mealtimes. The medication sits around the meal times now. It was difficult though and I think it's just something you just cope, go through. I remember holding her screaming in one hand because she wanted her milk, as a very young baby, trying to get the syringe and the bottle and the bottle smashed on the floor. Which doesn't sound too horrendous but this specialist medicine had to be ordered three weeks in advance from a specialist hospital so we did have our moments. But the problems just had to sort themselves out and they had to fit around us as well. I always feel that if I've forgotten her medication and we're out having a good time, say a picnic, I miss the medication. I've been told that it's OK, that she won't come to any harm if she misses one. I feel that it's important that she has a normal life and we don't live around the medication. It's got to fit in with us to a certain degree.

Most babies of parents we interviewed were given their medicine at the same time as their feeds. Fitting medicine around a baby's feeding time was sometimes difficult if they were on several medicines a day. Many of the mothers we talked to recalled that their baby would be sick after a feed and then they had the dilemma of what to do about the medicine.

 

Recalls the dilemma when her baby brought up his medicine, but says it gets better as they get...

Recalls the dilemma when her baby brought up his medicine, but says it gets better as they get...

Age at interview: 3
Sex: Male
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And it's this awful sort of thing, where, you know, you've got this battle to try and get a feed down him and then you're trying to pick the right moment to give him his medicine, you know so that he's not going to be sick. And you manage to get some feed down him then you manage to get the medicine down him and then he's violently sick and you think all that's all gone, its all wasted really. But that's how it was and it was just this battle really to sort of try and get the timing right and at one time, I think he was on 13 lots of medicine a day, at one time. 

You know, you have to write everything down and just the whole day, it's on your mind, right I've got this, I have to do that, you know and planning out when you are going to try and do it and fitting it in between feeds of other babies and toddlers, and cooking and cleaning and nappy changing, and you know, trying to fit it all in, it's hard. But, you do do it, somehow you get through it but he did have a lot of sickness. Sometimes you'd think, well he's had his medicine but he's been sick, do I give it to him again. And sometimes it meant phone calls to the hospital to check, you know, well he's had this but he's just been sick, do I do it again or do I leave it until tomorrow or 'til the next dose? And again with the medicine, you do tend to think, my god, is this it, you know, is there ever go to be an end to this. It's just this sort of battle, he didn't want it, he'd scream, he'd fight, you know, he's pushing it away and you know, you think well, what do I do? do I literally shove it down his throat or do I leave it for now and come back later, you know. But you do get used to it and you get better at doing it and now he does it himself. I put it in the syringe and he, he actually comes out and sort of practically asks me, where's my medicine, then? I mean, now he's just on, he's on warfarin now and still on the penicillin. I mean in between times, he's been on various other things for you know, he suffered quite a bit with urine infections at one time. So he was on medicine for that, trimethoprim. But that at the moment, touch wood, seems to be OK, so they've taken him off of the trimethoprim so he's just on the penicillin and the warfarin and that's just once a day. So we just have that sort of before bedtime, really.  

And as I say, now he just takes the syringe off me and he does it himself and he thinks he's very clever, you know. We have great fun because he likes to sit on the worktop and then try and throw the syringes into the bowl and it's all great fun. 

Some doses of medicine need to be given during the night. One couple explain how they overcame this problem. Another couple remarked that they still have difficulties giving their 3-year-old son his medicines - they attribute them to having to wake him in the middle of the night as a young baby to give him medicine.

 

They organised medicine times to avoid having to wake their baby during the night.

They organised medicine times to avoid having to wake their baby during the night.

Age at interview: 3
Sex: Male
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Father'  It's always fear of the unknown really. I think the first time we came home from [the specialist hospital] and you're presented with all this medication and your head's spinning anyway, till you get a grip of things. But they gave us all this medication and double checking, triple checking that you're giving the right amounts at the right times. I think it, it was a very frightening experience coming home for the first time because you'd been in hospital, which was a safe environment. Doctors and nurses there on call. I mean you come home and then 'bumpf' it's down to you and, you know, you alone have got a seriously ill child and you've got to look after them. But like most things you'll find within, within a week or so it just becomes the norm. So yeah, it is if you're thinking about it, it is a normal reaction to be frightened but it will become the norm.

And what medications was he on?  

Father' He's been, he's been on various medication but at the moment he's on, he's on warfarin, enalapril and he's just gone onto that and that's replacing captopril. The captopril was a bit awkward because he's had that 3 times a day with a 6 hour gap in between which meant it was really interrupting with sleep, so we we were making the captopril up the night before, so first, when he first woke up we could quickly syringe that into his mouth otherwise if you don't give it to him till 9 o'clock, 10 o'clock in the morning, then the second and third doses weren't going to be later on in the evening.

 

Their son hates taking his medicine because it was forced on him as a baby.

Their son hates taking his medicine because it was forced on him as a baby.

Age at interview: 3
Sex: Male
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Mother' Well as soon as you get him, sort of tuck one arm under here and have the syringe, he'll start crying. But he has sussed that when he cries, he gets it and he will now cry with his mouth closed. Ooh. [Father' Laugh] Just recently you had he had a high temperature and he had some antibiotics for it and we just, we had to hold his nose, didn't we? 

Father' Hmm. So he'll have to open his mouth 

Mother' So he'll have to open his mouth because he would just, he was crying but he was keeping his mouth closed.

Father' The old fashioned way, we had to squeeze his nose.

Mother' Yeah and when there was two of us it was OK. When there was just one of you, it was really, really difficult and like his brother had to hold his hand so he couldn't reach and get up and we've had I've been covered in medicine before where you squirted it in and he blaah, you know, spat it back at you and so because of all the early experiences. I mean, his brother is absolutely perfect isn't he? You know he would take any medicine, would take it on a spoon or whatever but he just, he would probably always hate it I, I think.

Father' It's because it was forced upon him for such a long time.

Several parents commented that giving their child medicine had become easier as they got older. One mother said that her 3-year-old son reminds her that his medicine is due and takes the medicine in the syringe himself (see Interview 14). Many parents mixed their child's medicine with a drink or in yoghurt. One mother describes how she tried to make medicine time as much fun as possible.

 

She tried to make medicine time fun for her son.

She tried to make medicine time fun for her son.

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And the times he was on diuretics he didn't like the taste of them but he knew that if he didn't have them he'd be poorly. I was always really straight with him. I used to say 'Look if you don't have this medicine you'll be really poorly and we don't want that, do we?' And he said 'No, I'll have it'. And a tut and a sigh he'd have it. Occasionally he'd run away but that was more to make a game rather than because he didn't want it. He'd go and hide in the porch and say 'You can't find me'. And it's like I'd go in and he'd, gave his medicine. And his cousins used to like help him. If the cousins was here and it was medicine time they used to watch me prepare his medicine and they used to like help, play nurse and give him his medicine as well. So we just used to try and make it as fun as possible. And as quick as possible and I used to say 'The sooner you have your medicine, the sooner you'll get better' or whatever.  

And the antibiotics, he never used to complain because he knew that he felt so poorly.  We always used to say, 'If you have your medicine you'll feel much better and that's what we want'. So we always tried to be positive. And you never heard me say 'Oh well that medicine tastes disgusting'. It was always 'Oh that's a yummy medicine'. It's like, perhaps we was kidding him, I don't know. It worked.  

Is there any advice you'd give to other parents about medication?

About medication? Try and get it over and done with as quick as possible. Be light-hearted about it. Don't get stressed about it because your stress'll just rub off on the children. And try and make it into a game if necessary. We used to give the teddy bear some medicine, pretend medicine. I've seen the time I've put water in a syringe for Luke to give his teddy bears. Because that's what 'Oh my teddy's not very well. They want some medicine'. So, it doesn't hurt, sort of a bit of plain water in a syringe. Try and make it fun and I'm sure that it does work. And be light-hearted. But you've got to be firm as well.

A few had suffered side-effects from their medicines. One baby reacted badly to a diuretic, another who was on long-term corticosteroid suffered thrush and reacted violently to some antibiotics. One experienced persistent coughing and had his medicine changed. Another who was on amiodarone was very sensitive to sunlight; which is a common side effect. One mother commented that her baby suffered from constipation, sickness and stomach cramps when taking flecainide.

Some medicines needed to be specially ordered from the chemist, which parents said was a monthly ordeal of making sure that repeat prescriptions were obtained and the medicine was available in time. Some medicines were in tablet form and needed to be crushed to give to the baby.

 

Had problems with repeat prescriptions.

Had problems with repeat prescriptions.

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Because the amiodarone, I don't know if it's not commonly used with children but it isn't available. It's available in tablet form or injection form but not in a liquid. So it had to be specially made. So the hospital done that and then the chemist next to my GP sent off, he used to get it made.

But it only has a shelf life of 28 days so it's a daily medicine. You can't miss one and every 28 days you have to get a new one. It has to be kept in the fridge.  I mean, I think the medicine has probably been the most stressful thing over the last year than anything else. Just because there's always a problem in, because it only has a shelf life of 28 days I used to put in the repeat prescription and they needed 4 days to get the medicine and there was always a problem.

I think last Christmas, the day before Christmas Eve the chemist had rung us to say the medicine's in. We'd gone to pick the medicine up, the medicine wasn't in. Then they were saying 'We can't get it, we're closing for Christmas'. And I was like, 'Well I need it'. You know, I can't just not give it to him for a couple of days because everywhere's shut, I need to give it to him. But then the hospital were brilliant because I rung the hospital and my doctor, Jack's under two doctors, a cardiology doctor and a paediatrician and, one of the doctors just said, 'well that's stupid, come here' and he sorted it out at the hospital for me. Very, yeah, very stressful but at least it was made into medicine.

Some children need to take anticoagulant such as warfarin for life. This involves going to the clinic for regular blood tests to check that the INR (the length of time it takes for blood to clot), are satisfactory. Children taking warfarin also need to avoid contact sports such as rugby or karate. Horse riding is also potentially dangerous due to the risk of falls. Children need to be careful about injuries or knocks and bumps and if they have extensive bruising or they appear drowsy after a head injury you should seek medical advice immediately. Teachers and other carers need to know what to look out for and if bleeding does not stop quickly they should be taken to hospital. Diet can interfere with anticoagulant such as warfarin and cranberry juice and changes in the amount eaten of green leafy vegetables rich in vitamin K should be avoided. Other things that can interfere with warfarin are general ill health, diarrhoea and vomiting and other medicines such as antibiotics.

One mother whose son is 7 explains that apart from not being able to take part in contact sports, her son can take part fully in school life. Another mother of a 3-year-old boy mentioned that she just has to be extra careful with cuts and bumps but generally she did not worry about him being on warfarin.

 

How taking warfarin affected her son's school life.

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How taking warfarin affected her son's school life.

Age at interview: 7
Sex: Male
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He does very well at school. He's a very popular boy. He is restricted now in that he can't take part in contact sports such as football, rugby and cricket because he's taking warfarin so he has to be careful about injuries and knocks and bumps. But apart from that he takes part fully in school life. The only slight problem is that we have to go for the blood checks regularly at the hospital so sometimes he has to miss a little bit at school. And also check ups down at, down at our, our cardiac hospital. But really, yes he takes a full, a full active part in school life.

 

How warfarin affects her 3-year-old son's daily life.

How warfarin affects her 3-year-old son's daily life.

Age at interview: 3
Sex: Male
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It's not so hard to cope with the warfarin at all. Not nice that he's got to take it but then again that comes part and parcel of Daniel. Basically it just thins his blood. Obviously if he has a severe knock we have to take him into casualty to make sure there's not sort of excessive bleeding underneath the skin but, you know a really bad knock, not a bump on the head falling over. I mean, you obviously use your judgement in that way. If he cuts himself we have to make sure that the bleeding stops but again judgement's used.  If it's sort of a cut on, outside he grazes his knee that's not going to need medical attention but if we was to fall on glass and really wound himself then we'd have to have that looked at. If he has antibiotics, that alters his warfarin. We have to get that checked straight away because the antibiotics messes with the warfarin. I don't know how, but his dosage will have to be monitored then. And that's basically it, really to be honest. Any bad knocks, he's not supposed to play sort of contact sports that sort of thing while, because he's on warfarin because any severe knock can be well, fatal really, but I have to say I'm not fazed by his warfarin at all. 

On occasion, parents recalled that their child's INR had gone out of the satisfactory range and the dosage had to be changed and more regular blood tests taken at the hospital. One mother who lives on one of the UK islands had a home testing machine, which she said had enabled them to be a lot more mobile.

 

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.

Age at interview: 4
Sex: Male
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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. 

 


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Last reviewed July 2018.

Last updated March 2015.

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