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Parents of children with congenital heart disease

Taking your child home

Parents described a mixture of emotions when taking their child home from hospital, either after surgery or after birth. Several couldn't wait to get home after being in hospital. One father describes feeling frightened at first of the responsibility of caring for their baby at home but said these feelings soon passed. A mother explains why she felt confident and relieved to be bringing their daughter home after surgery.

 

Felt frightened at first of the responsibility of caring for their baby at home but said these...

Felt frightened at first of the responsibility of caring for their baby at home but said these...

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, 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, 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. Then 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, if you're thinking about it, it is a normal reaction to be frightened but it will become the norm.

 

Felt confident and relieved to be bringing their daughter home.

Felt confident and relieved to be bringing their daughter home.

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Mother' It was a relief. I was relieved to be home.

Father' It was, it was one of the best things I've ever had getting my family back under one roof.

Mother' We had Christmas again, didn't we? In January we had a big Christmas because we'd left Christmas half way though and we'd had all our decorations still up.

Father' Yep and I can remember because I was staying at home in the evenings to look after [our son], every night before I go to bed I'd look in her room and the cot was empty. And it was very, very difficult and you'd each night, you think well you know, maybe soon, maybe soon. And to actually get both of you back in under the roof, was the best feeling ever, it was just fantastic. It really was. Still with the knowledge that you know that there was gonna be many operations following and a lot more heart ache but it was it was a wonderful feeling to have everybody back under one roof, even though knowing it was only going to be for short period of time.  

Mother' Yeah, but I think the other thing was is that I was very confident with her 'cos I'd stayed with her in hospital and I wasn't worried at all and they said to me, 'We won't send you home unless you're totally confident with what you're doing, with the medicine, with what you're doing with feeding but what I noticed when we came home was all of our friends and family were, oh, you know, you're not worried and oh, you're not putting her in her own bedroom are you? And we were like, well yeah. [Father' of course we are] And we were totally at ease where everyone else obviously as I probably would have been. They'd seen a, you know a baby's had a cardiac operation. 'Oh my god, you know, how are you going to cope with her at home where as to us, we'd seen her through it.

Father' We had to be very careful with her at home but it wasn't you know my understanding of it would have been you know we would have had; not to pick to her up, not to you know let her move around or anything or anything like that and it was no where near as restrictive as I thought it was [Mother' No] gonna to be after the first operation when she had the closed heart surgery, it was nasty and you had to be very careful. But even when we brought her home after the second operation on open-heart surgery, it was, you didn't need to be as delicate [Mother' No] as I'd imagined, you know it was.

One couple who were relieved that surgery had been successful were nervous about administering medicine at home, but knew they could phone the ward at any time if they were worried.

 

Felt relieved that surgery had been successful but nervous about administering medicine at home....

Felt relieved that surgery had been successful but nervous about administering medicine at home....

Age at interview: 1
Sex: Male
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Mother' Yeah, so when Josh came home, I guess it was the, I was worried about 'cos he was still, he was on diuretics and I, you know, we had to give him the drugs which I must admit I was a little bit concerned about, you know because it's frightening, you know, 'What if I get it wrong?' and all the rest of it but they were very good. You know, they talked us all through it and you know, went through the exact, and it was all, you know, pretty straightforward so, and they always you know said 'If you've got any problems just ring the ward and we'll...' you know 'help, give you advice or whatever'. So it was, it was fine in that respect. So yeah, I mean, bringing him home, it was almost like having a new baby again really. Sort of, I don't know, it felt so good to bring him home. It was like having a new baby again, it was...

Father' I never thought we'd get there, I mean, I think, we're...

Mother' You didn't want to think to that stage, did you really?  

Father'You never, you never thought that it'd actually, you never, I think we'd never actually sort of seen that. You, like I say, you never actually see past the problem. You know, you only sort of see the problem and you can't, you don't, you know, it's just such a, it was such a huge thing to get, to get over that when we did come home it was just, it was just a hard, it was just, it was just, it felt really strange because we can't actually believe that we'd made it.

Some mothers found it hard to cope with feeding problems, giving medicines, sleepless nights and worry about symptoms when their baby first came home from hospital. One mother had felt very alone even though she knew the medical support was there if she needed it. Another said she was excessively protective of her baby when they were first home after surgery but became more relaxed after a time.

 

She found it difficult to cope when she brought her baby home from hospital.

She found it difficult to cope when she brought her baby home from hospital.

Age at interview: 7
Sex: Male
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Well, we knew that we could phone the hospital at any time, the paediatric ward. We could phone day or night if we had, we had any problems. We were very fortunate that we only live 20 minutes away from the hospital so I also knew we could just jump in the car and go there at any point if we wanted to. And we, we frequently did.

I also, I had a wonderful Health Visitor who was very supportive. We were also lucky enough to have a paediatric district nurse who came out and checked on the baby, took his, monitored his stats and was also a great support for me as well. So we were very, very lucky to have her. My GP, she was also wonderful. But having said that I did feel very, very alone when, when I first went home from hospital and I found it hard to cope.

And I thought that well, things will get better as time goes but actually things didn't get better, I found it harder and harder to cope. Looking back now I realise that I hadn't, I hadn't bonded with the baby before he was born. I hadn't expected to bring him home, it was a real shock when I did. And it was almost as if he didn't belong to me as if he was just somebody else's baby who had been dumped on me who I had to look after. He just didn't feel like my child at all.

 

She was excessively protective of her baby when they were first home after surgery but she became...

She was excessively protective of her baby when they were first home after surgery but she became...

Age at interview: 3
Sex: Male
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When, when, when I did bring, when we brought Daniel home I wouldn't even take him out in the pram. I wouldn't, I wouldn't take him out for walks. I wouldn't take him to ASDA. I was, I was too scared. I was too frightened. I didn't think that Daniel would, could do anything. As I say, I wouldn't let anybody pick him up. You know, knew, everyone knew that this baby had come home and friends and people, neighbours were all coming to see him and I, I, 'Don't touch him. Leave him on the couch'. Only I could feed him. Nobody else could feed him. It was just, but you get through that. It's just because you feel you've got him home now, 'He's mine. Nobody's touching him'. Because I was, I was frightened of them hurting him as well, to be honest because he, they do have quite a hideous stitched scar and it's not very nice to look at and you have to bath them with this scar and you're looking at it and you don't want the water to go on it. But it's, it's a learning process.

 

Parents were given the symptoms or signs to look out for when they took their child home. One mother, whose baby has Wolff-Parkinson-White Syndrome, explains that she became obsessed with checking her baby's pulse. She felt overwhelmed with the responsibility of caring for him when she first brought him home from hospital but now she has learnt to cope when her son has an SVT episode.

 

Checking her baby's pulse rate and looking after her baby became all consuming when she first...

Checking her baby's pulse rate and looking after her baby became all consuming when she first...

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I was absolutely focused every day on what his heart rate was. I'd wake up and the first thing I'd have to do was, you know, it wouldn't be going to the toilet, it'd be check what, what his heart rate is. And I, you know, they said 6 hours and I ended up doing it more than every 6 hours. It was, he'd be asleep and I'd think 'Oh do you look a bit blue' and I'd get the stethoscope out and I'd be listening to him. People would be talking to me and mid-conversation I'd sort of go off and, you know, be thinking of Jack' heart again. Which, you know, it's not in my nature to be like that so it was a bit whoah, you know. 'Why am I feeling like this?' But obviously it's your baby and, you know, it's, it's all strange and it's scary. It's so very scary because you sort of think, you know, 'What happens if?' You don't, you know nobody wants to go over and see your baby very seriously ill or worse so, you know, it was almost like I couldn't sleep I had to have him with me all the time. I couldn't let him out of my sight. No one else could feed him a bottle. You know, no one else could do anything. So, which, which was really intense actually. I know a lot of new mums are probably like that but it was all about his heart. Everything was heart, heart, heart. 

My Health Visitor come every day for weeks which, that was a, that was a bit of a strain. My mum took lots of time off work and didn't leave my side. It sort of stopped me sort of living a normal life I think for them first couple of weeks. I'd sort of had all of these plans that I was going to, you know, visit my old work and I was going to see this person and that person and, and every day if we wasn't at the hospital somebody was coming here to see us. Or I had to go to the doctor's or had to go to the other hospital or someone wanted to have a look at him. So that was quite hard.

Apart from the actual shock of having a baby I seemed to have appointments coming out, I had Post-It notes everywhere. I've got to see this person, I've got to do this, I've got to do this. They wanted to check his blood so he had to go for blood tests. Yeah, them first couple of weeks were, I seemed to have lots of people, I'd, I'd met lots of new doctors and nurses. I never knew, because I was, he was under two hospitals I'd turn up at one hospital and think 'I don't know if I'm meant to be here or the other place'.  

I wasn't getting much sleep because even when he was sleeping I was then watching him sleep in case something happened to him while he slept.

 

Describes how she has learnt to cope when her son has an SVT episode.

Describes how she has learnt to cope when her son has an SVT episode.

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So, since he's been off the medicine anyone that's needed to know has known and everyone knows what to do in an emergency. And, luckily, since he's been off the medicine, which was his birthday, we stopped it on his birthday. In fact I stopped it the day after his birthday because I didn't want him to be ill on his birthday. So I waited. But he was fine.

He's had one short attack of SVT which lasted 15 minutes. So in, in the grand scale of things that's really good because although he went blue, I mean literally like that, he, and he started crying and his colour just changed. I'd been really worried about how, how I would know when it happens, which I'm not now because after seeing him and seeing him just change colour like that there's no way that I could have mistaken it. And luckily it did only last for about 15 minutes. Which, it could have lasted longer. He could have had to go into hospital. So...

What did you do then?

Well, he was in, I was with my cousin and her children at my mum's and we was all in the garden and he was actually in my cousin's little girl's buggy. Which is blue. And at first, he was there and he was going asleep and he was having a bottle and I thought  it was just the reflection from the buggy. And I was like 'he looks a bit blue' and her daughter, she's six, and is absolutely obsessed with doctors and nurses so was very ok I'm taking control of this which was good because she was making you laugh because I thought I was just over-reacting. And she was like 'Oh, he don't look well'. And I was 'No he doesn't, does he darling'. And I just sort of got him out and we, by the time we'd debated on was he blue, was he grey, is it the buggy, is it me, are we over-reacting? He had just got into such a state, obviously, they, what they say is that as they get older they can come and tell you. It's like having palpitations and they can go dizzy, they can faint, they might collapse.

But he did none of that. He just really, really cried and a cry that I'd never ever heard before. So I just thought, you know, it is. And I rung the hospital, said, you know, 'He's, he's fine now', this was after the event 'He's fine now but this is what happened'. And they said, you know, 'It sounds like he's, he's had one'. He has to go on like a 24 hour heart monitor every, well they doing it every 6 months now and just to see what his heart's doing and they said that if I wanted to take him up for monitoring. But he was fine after that so I decided not to which, you know, shocked myself because normally I, I'd normally be at the hospital saying 'Keep him in'. Because, I, you know, wasn't very confident. But I actually feel very confident with it now and, and, I thought no, he's fine. I checked his heart, his heart was fine and they said that if, if, you know, if he's likely to knock himself out of it. It's if he can't knock himself out of it that he needs to go to hospital or something.

So yeah, yeah, we, we just, I just took him home. We just went home and I just had him here quietly and didn't sleep that night. But he was fine. You know, he was fine. And it's only, he's only had one since when he, that was four months ago so, well he come off the medicine four months ago and the attack was about two months ago so, and he hasn't had one since, so. And they can't tell me if he's likely to, if he's not you know, they can't give me the answer to that. Which I accept now but, you know, they can't tell me. So, yeah, I live with it now. It's not, it's not all encompassing anymore.

Another mother explains that she needs to be aware of changes in her child's health because of the episodes of tachycardia he experiences.

 

Describes episodes of tachycardia her son experienced caused by his Wolff-Parkinson-White Syndrome.

Describes episodes of tachycardia her son experienced caused by his Wolff-Parkinson-White Syndrome.

Age at interview: 3
Sex: Male
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What are episodes like?

  He becomes really lethargic, he breathes really fast and he'll say 'my chest, my chest is banging' and he'll say put my hand on his chest. And he is just really lethargic, he can't sort of move off the settee or whatever. It is really strange, but I've read up about it and apparently usually Wolff-Parkinson-White it is not uncommon, but it mainly presents itself when you are an adult if you do lots of sport of you have lots of caffeine. You know you can end up in hospital and then they'll tell you, give you the diagnosis. What they often, what a lot of babies do and children is they'll breathe in and close the mouth and make a grunting noise when they are breathing out through their nose. And that is your body's sort of natural way of trying to slow the heart rate down and they can flip out of it themselves doing that and by lying on their front. So that is why he used to grunt in the first few days. Because the doctor said it was because he had a cold and it was all the mucus but the hospital later said it could of, that's just their sort of natural reaction to it.

Tell me a bit more these episodes when he has them, how long do they last?

Well, the last one lasted about 2 hours and then that was it. But obviously the first one had been going on for days, 2 or 3 days. And generally, yes it's probably about an hour and a half, 2 hours and I have never had to sort of rush him up to the hospital for them to give him Ademadine, I think is what they would give them, to bring it down to a normal rate. So we have been quite fortunate.

What sort of circumstances are you looking out for, would it still be the very raised pulse?

Yeah, like I say, he'd look quite grey in appearance and he would be breathing really fast but obviously I know what his heart rate should be so if I just take his pulse then I'll know how he is.

 

Many parents described being constantly anxious about their child when they were first home from hospital. At first it was difficult to learn which symptoms were related to their child's heart condition and cause for concern, and which were minor.

 

Describe being worried about minor illnesses when their child was first home from hospital.

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Describe being worried about minor illnesses when their child was first home from hospital.

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Mother' I think it's everything at different stages. I think you, obviously you do have your good days when everything's quite positive and then we've both had some really bad days when everything's looked a bit dark, dark and a bit more doom and gloomy. I think some of the times when, you're not quite sure what's happening, I think if she's been there just looking at you and smiling and you think 'She's happy and she's coping really well'. It's just when she hasn't been well, I think you do get a bit more emotional. And I don't think anybody can, can tell you how you're going to be feeling at different points. I think it's like, it's almost like it changes from one minute to the next. That one day you can be absolutely totally happy and then someone can say 'Oh she's not looking very well' and you start to be a bit more anxious and realise that she's not'

Father' Well that's even if it's a normal childhood like cold or teething or whatever, you tend to take it a bit more seriously. And in her case it's not, it doesn't make any difference now. And we've been told that, that it doesn't matter how many times we're told that, you're still a bit more cautious and, over, you know, what going on with her.

Mother' Yeah, there's been times when she wasn't breathing very well when she had a cold and you're constantly sitting there watching her and you think 'Well no, she's fine, she's all right'. And then she'd sort of cough and you think 'Should I go and get that checked?' And then there were a lot of times when I phoned you to sort of say 'Listen to her breathing'.  

Father' And there are things like you just look at her and you think 'Has she gone a bit blue again?' And you, because of her surgical correction she can't, we know that, but it sometimes, and it's just, she might have a cold, whereas a normal child would go a little bit off colour but it's just you, yeah.

Many had gone back to the hospital, or telephoned the ward for advice about their baby's symptoms. Parents recalled that they had never been made to feel they were wasting doctors' time (see 'Follow-up').

 

Have taken their baby back to the hospital when they had concerns about symptoms.

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Have taken their baby back to the hospital when they had concerns about symptoms.

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So that was just a really amazing feeling actually being discharged and coming home but also really scary because while you've got the medical back up it's quite a different story to when you're at home. And they're only a phone call away but it's still quite different to compared to actually having somebody just outside the door. 

Can you explain that, how different it is?

When there's somebody just outside the door you know that you can just ask them to come and look at anything that concerns you. And particularly with, the cardiac conditions a lot of things are observation in terms of the baby's colour and their reaction and things like that. Or just asking for second opinion or something. You can just easily get that. Whereas over the phone, yes you can get a second opinion but it's not quite the same as, you know, 'Have a look at this, what do you think?'

So yeah we've been, we've been back to the hospital a few times since, since we've been home and sometimes as planned appointments sometimes its things I've just phoned up about and needed to take him back in.

What sort of things did you want to find out?  

One time he was quite puffy and I thought he had probably got a bit of fluid retention so that's one thing that we took him back in for. Another time he actually had an infected stitch on one of his scars from his surgery and another time it was his breathing that was concerning me so it's those kind of things that you know concern me over, over various periods of time and you sort of ring up and see what they think. Take him back in.

Getting medical advice about symptoms can be more difficult if parents do not live near the specialist hospital and cannot easily take their child to the hospital. One mother who lives on one of the UK islands learnt that if she had concerns she could call the specialist and she has always found them willing to speak to her and answer her questions.

 

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

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

Age at interview: 4
Sex: Male
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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.

One couple describes an incident when they needed medical advice late in the evening and their local hospital could consult the specialist hospital.

 

Describe an incident when they needed medical advice late in the evening and the local hospital...

Describe an incident when they needed medical advice late in the evening and the local hospital...

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Mother' We've just had I think an awful lot of support and I think we always, always knew there were people we could speak to if we needed like help, even in the middle of the night. You know. I think there were several occasions where her oxygen dropped and we did sort of take her up to, up to the unit just to be checked and just to put your mind at rest that she was doing what she should be doing.

In the middle of the night?

Mother' Yeah, [Father' Yeah] middle of the night, early morning. Sort of late in the evening. I think.

Father' But at one point had to have, a bit of lung tissue had come through her rib cage, sort of a hernia in her chest, which apparently can be post-op, can be quite normal but we rang. It's quite frightening to see 'cos as she was breathing this lump was just coming out of her chest. And we rang our local hospital and they said bring her straight up. The consultant was in waiting by the time we got there. They saw her and they double checked it with the specialist hospital on the phone there and then. Two consultants checked on the phone in front of me so they weren't keeping anything back. They explained it all, explained the next appointment we had. And the specialised hospital said that they'd examine it more closely but not to worry. And that, that was it basically. We weren't made to feel foolish or anything, you know, it was just, you know, it happens sometimes.

Several parents mentioned that when they took their child to their GP with some worry, they never had to wait for an appointment.

A few parents had taken a paediatric first aid course which had helped them to feel more confident in caring for their child at home.


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Last reviewed July 2018.

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