Parents of children with congenital heart disease
How having a child with congenital heart disease affects daily life
When their child is diagnosed with congenital heart disease, parents may worry about how their daily life will be affected, whether they will be able to go on holidays and how their work will be affected. Here, parents talk about the impact on daily life during their child's early childhood.
All parents said their daily life had changed in some ways, but for several this had only been around the time of their child's operations and they said that life was now normal. One mother said that their 3-year-old's heart condition did not affect their daily life but she did worry about her.
Describes the temporary impact on their daily life around the time of their daughter's operation...
Mother' I mean obviously there was, you know, around the time of the operation we felt we couldn't plan. Leading up to it we didn't know when it was going to be, it kept being cancelled and we felt you couldn't plan things and I, certainly, work-wise I took on different, I mean I worked a lot less, you know, and, and didn't take on work because I wasn't sure about what, you know, what was going to happen.
And obviously afterwards when she was poorly and needed me around a lot that's, that, you know, it obviously did have an impact then. But not, not now it doesn't, no. I mean, I don't think we would treat her any differently from... Obviously having children has an impact on your daily life but it's no, no different from having two young children, no. We don't treat her in any different way now.
Their daughter's truncus arteriosus does not have any practical impact on their daily life.
The way we understand it is that we've got to look at it as she has a normal life and she will have normal health but she will have to have operations throughout her life. We don't know how many or when, we can't tell. Hopefully not too, not many at all. And so it's the psychological burden that you have to carry from day to day. And not the practical burden apart from the fact that the operations will obviously impact.
And what's the psychological burden?
Worrying about it. Just, it's worrying about it.
Frequent hospital visits are usual. One couple whose son had four operations in his first ten months of life had not realised how much this would affect their life. They said that had they not been living close to the hospital where their son received treatment, they would have needed to move house.
Describes impact on their home life when their son was in hospital and later having to make...
Father' You were resident weren't you?
Mother' I mean I was living there, but because we were only living 10 minutes away from the hospital the children were still, our other children were still able to visit us and they were still able to have their tea with us sometimes and we were still able to do their homework with them. But if we'd been in any other city we'd have, I suppose we'd have had to have coped but the effect that it would have had on your home life would have just been phenomenal. And although Felix is doing well at the moment you are still backwards and forwards to Warfarin clinic and you are still backwards and forwards for hospital appointments and really it just wouldn't have been practical. I think that we'd have, if he'd have been being treated at another hospital long term we'd have had to have seriously considered moving nearer to, to where he was being.
Frequent hospital appointments can mean time off work. Many employers were very accommodating and had told them to take as much time as they needed after diagnosis, for hospital appointments or during operations. One father had been able to take one month off work when his baby had his operation. However, others said that they had to take holiday or unpaid leave for the times their child was in hospital. One mother had to take holiday leave when her son was having his operation and make up her hours. She advises other parents who have similar problems to get a certificate from their GP.
He has to use holiday time to go to hospital appointments and she has to take unpaid leave. Her...
She had to take holiday leave when her son was having his operation and make up her hours and...
Father' Yeah well, you can't, you can't [laugh].
Mother' But isn't that incredible? I mean at the time, when I went into see the personnel office with my boss, and he said, oh well, we're prepared to give you two weeks holiday and then we'll give you unpaid leave. You just don't argue because you're mind isn't on the logistics of you know, OK I'm gonna have to make up teaching hours or you know, or whatever. You're almost not there, you, you're back with your son at the hospital or whatever. If he'd said to you, OK you can take the time off but I'm gonna cut your arm off when you come back. You would've just said yes because you weren't really thinking about it and you know, in hind sight, if I'd just gone to my doctor and said how can I possibly be expected to work through during this period while my son's in hospital. The doctor would have said, you know, here's a certificate for as long as you like. And when, after the operation when we thought Toby was gonna have to go back in because of the fluid round his heart I went and got a certificate and he didn't have to go back in then but...
That's probably something I'd you know, if parents are having trouble with employers, I'm sure a GP's, I mean what GP wouldn't sign you off? for something like that.
Some mothers took extended maternity leave or had not planned to return to work after the birth of their child. A few had returned to work. One mother said her career plans had changed (see Interview 04). Another returned to work part time when her son was six months old and explains that it had been good for both of them.
She returned to work part time when her son was six months old and explains that it had been good...
Another mother found people didn't always understand the stress of caring for a sick child 24 hours a day, and describes how the family reacted to her decision to return to work. She encourages other working parents not to think that the only option is to give up work.
Felt people didn't understand the stress of caring for a sick child 24 hours a day & describes...
And I just sat down and sort of explained to him that I'd worked very hard for my career it was very important to me but also at that time [our son] wasn't sleeping at all and he'd been really ill for quite a long time, and I just actually broke it down and went through it with him. And I said you know 'he's awake all night, I'm awake all night with him and then if I have him all day as well I can't just keep going twenty-four hours a day, non-stop, seven days a week.' And I think it just made him think about it a little bit and, and think about what the reality of it you know might be.
Because I think sometimes its really easy for people, including my parents sometimes you know, you know my mother makes comments about how often I cook or don't cook or whatever. And, you know when they're, they're very seldom here to see what the reality of the situation is like for you and how you can manage to fit in all of these various things and its just understanding that really.
And I think that, I think that the other thing is you know at a practical level not to underestimate you know the impact and the level of organisation that you might need. And I'd say to you know parents who are working don't kind of just think that the only option is to give up, you know if may feel really hard at times to carry on if you're not sleeping and you're going to work and child care feels like a nightmare. But you know persevere with it and if one thing doesn't feel right you know don't carry on with it, you know try and pursue other things.
Sleepless nights were common. One mother said her daughter's sleeping pattern was disrupted every time she was in hospital and it was difficult to return it to normal. Babies slept in their parents' rooms or parents relied on a baby monitor for longer than they would normally have done.
Social life can be affected. While waiting for surgery, some parents felt they had to stay at home. It could be difficult to find people willing to look after their child, or they preferred not to leave them with others. One couple explain that before their baby had corrective surgery their daily life was more home based, but after surgery it had returned to normal.
Their daily life was more home based before their daughter had her corrective surgery but now...
Father' But that was before the second operation.
Mother' Just a minor'
Father' Because we knew it was what was, she was high risk during that time so.
But now do you do that now?
Mother' No. No. Just take her anywhere. Don't do anything with her in '
Father' No, she'
So daily life now is quite normal?
Mother' Quite normal, I think in the beginning I was anticipating going back to work maybe part time which I'd put off because I didn't want to leave her and I wasn't happy about leaving her with anybody else. There were only one or two people that I ever left her with in between operations for short periods of time. But now she's had surgery we're quite happy leaving her and going out for days and just even sending her to grand parents and I think'
Father' Which we wouldn't do'
Mother' Which we wouldn't do'
Mother' During the first year my mum and dad wouldn't, well it's not that they wouldn't look after her, they weren't confident to be looking after her by herself and she, since she's had surgery they've felt confident enough to have her and do sort of normal grandparent sort of things with, with the children.
So that first year in between surgeries, you didn't, you know, you didn't want to leave her with anybody. [Mother' Correct] What effect did that have on you as a couple, in terms of being able to go out?
Father' It didn't basically, not much
Mother' We didn't go out. I mean I think we weren't as bad as to say like we'd both stay in. And I used to say it, tell you to go out with things, with other people and we did go out separately or we'd go round to friends houses rather than go out sort of places and do things. And I think we had a lot more home focused life than we were used to. We wouldn't sort of pop down to the seaside for the day. Whereas we, we probably would of before. But we can, we can do things like that now.
Children with heart conditions can have frequent coughs and colds during the winter months, and this can stop parents taking their child out to social events or leaving him with others. One couple went to fewer community events because of their son's susceptibility to infections. A single mother didn't leave her son with anyone for the first two years and they went out less as a family because she didn't want to risk an infection.
Their involvement in community life has decreased because their son was often ill and was...
She didn't leave her son with anyone for the first two years and they went out less as a family...
But now he's that bit older, a bit stronger really. We do go out quite a lot now and I do, my mum comes to baby-sit sometimes and, I mean, they love that and it does mean I can, you know, get out, just have a little bit of time to myself. But, yeah, you know, it was quite hard I suppose for the first, at least the first two years really. I, I didn't really leave them at all. I was sort, just wanted to be there, you know. I suppose also for the first sort of 7 or 8 months really he was so in and out of hospital I felt I wanted to make up that time. I mean his first Christmas he spent in hospital and you want to sort of make that time up. And Christmas this year is quite special. It certainly was last year because it was the first Christmas that he'd been with us. We'd all been together for Christmas and that was great, you know. So, but no, certainly a lot easier now.
Parents had adapted their daily life to their child's heart condition. One couple whose child needed oxygen for the first four months of life insisted on getting small cylinders to use outside the house so that they could go out and about.
Their baby needed constant oxygen. It was made available all over their house and they insisted...
Mother' I mean what I would say is that for anybody that was faced with that situation prior to Felix being on oxygen I really thought that was one of the worst things that could happen. From a, a practical point of view really but once we were actually faced with it and we brought him home, I mean it was for four, was it four months? [Father' Hmm] It was actually very surprising how quickly you adapted. I mean once it was piped through the house it wasn't really a problem was it when we were in and because he was of an age where he wasn't mobile, he, he was quite good. He didn't fiddle with them did he? too much and when, and when we went out we only ever had enough out with us for, was it six hours? [Father' Hmm]. 'Cos we'd take 3 cylinders 'cos he was on quite a high, a high amounts. You had to be sort of careful that you weren't too far away and that you had enough cylinders, but it didn't actually stop us doing anything did it? [Father' no].
Some parents had been on holiday abroad with their child. Others were hoping to when their child's condition allowed it. Travel insurance had not been a big problem - parents found they either had to pay extra to cover their child or look around a bit more for a company that would provide cover.
They have travelled abroad with their son and did not experience any problems getting travel...
Mother' We have never had a problem at getting that. When we booked our holiday to Disney, we just, we just had to take out, out some extra cover to cover him for that and we had a letter from the consultant to say that Matthew was safe to travel and there was no worries that he'd have corrective surgery and so we just had to have a letter to go with that. We just recently taken out annual travel insurance, and again we've told them everything that there is to know and I think we had to pay I don't know, about an extra 20 or 30 pounds to get some cover on there. So we've never had a problem with that.
So your holidays haven't really ever been effected in terms of where you can go?
Mother' No, we've been to Ibiza, Majorca, We've been to Abu Dhabi. We've been to Dubai and we've been to America because we can't, can't live in fear of not doing things, we just have to carry on as normal and try and live a normal family life for everybody's sake. It's not always easy, but we do, we try to.
Have had UK holidays and plan to travel abroad when their daughter's complex heart condition will...
Father' But as I said earlier you sort of get used to your daughter's condition and you find it easier, you, you know yourself when she's not 100%, so you sort of deal with it anyway. So sort of, I mean going away to somewhere in this, this I mean in this country wasn't, although the first time we did it, it was a big, big thing. You know it was a bit daunting because we weren't at the hospital, we weren't close to the hospital that we were used to, and things like that.
Mother' And the night before I'd convinced myself that she wasn't well. Didn't I?
Father'Yeah you had so we had to take her to A&E just to get her checked over. But it was just peace of mind, and, and once you'd got that peace of mind you, you're OK again. But now we sort of we don't, we don't sort of think about you know, is she going to be ill?
You know, OK, let's book this holiday. And if she's ill we cancel. If it costs, it costs. But I don't think you can sort of live your life thinking what will happen what, what happen, what, what if, what if? You know you've got to sort of get on and try and be as normal as you possibly can. Which is what we do.
Mother' A lot of parents that I've spoken to that have got heart children they have all said that that's the only problem, that they found they couldn't plan things or if you are going to plan things, expect, if you get there, well brilliant, if you don't try not to beat yourself up over it. You know these things happen.
Father' Just try again.
Mother' And our next goal is to go abroad with her. And every time we go we ask don't we, can we take her abroad now? And they kept saying, after her second stage. So when they told us they didn't think they? was going to do it, it was like that was what upset me more than, as well as the fact that she'd got to go through extra surgery, but you know, we'd set our hearts on getting her abroad, and then we thought we'd have to wait another 12 months, and now, they gave us the all clear to take her away so we booked up to go away next year, and hopefully we are going in January as well aren't we?
Dealing with stranger's comments while on holiday had been difficult for a few parents. One couple describes their feelings when people at the swimming pool stared at the scar on their daughter's chest.
Describes their feelings when people stared at their daughters scar on her chest while she was at...
Mother' But a lot of heart parents have told me that they found that difficult with because like when they've taken the children abroad people have been blatantly rude, you know staring at the children. And as the children are getting older you don't want them to have a problem with the scar. And one mum that I spoke to she was really upset by that. And she says to me that you know that's something that you are going to have to get used to, people, are rude.
Some children's heart conditions had more impact on the family's daily life, and for longer, than others. However several parents stressed that despite these changes they did not hinder them too much and they had a good life. One father said that when they were in hospital they did not believe life would ever be normal, and now it was.
Daily life involves many hospital appointments but doesn't hinder the quality of their family's...
But even though that's the case and that's what our life's like now I wouldn't say that's really, really hard or really, really bad or, you know, it's just part of our life. We don't even think about it any more, we just do it, we just get on with it. You know, I've, I've got a really good life now. I love my life and I live my life to the full and so do my children. And part of that is having to go to the hospital and having to go and see professionals and, and having to do all the things we have to do with Joe. So it hasn't really hindered my life that much.
Even though it's the hardest thing I've had to do in my life and it's the worst thing I've ever had to go through in my life, it has just changed my life, but for the better, you know.
I know what life's about now. You know, and Joe's just fantastic. He's just changed everybody who meets him, he changes their life, you know. And I think all of us as a family, you know, just have a much richer life now because of what we've been through with him. And, you know, he is a fantastically loving, wonderful, giving child. He is, he's lovely.
When you are in hospital you do not believe life will ever be normal but it can be.
Last reviewed July 2018.