Parents of children with congenital heart disease

How it affects relationships

Discovering that your unborn baby or child has a congenital heart defect can put great pressure on the relationship between parents. Some couples become closer, others can suffer a breakdown of their relationship. Here parents talk about the effect on their relationship and how they found ways to cope as a couple.

Some parents said their relationship had become stronger since they discovered their child had a heart condition. One father describes the admiration he had for how his wife handled things and how he had realised how important it was that they had each other to rely on. Another couple said that the time they had been able to spend together while looking after their son had made their relationship stronger.

Their relationship had become stronger through mutual respect and realising how reliant they were...

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Age at interview: 1

Sex: Male

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So what happened is it, I think from the point of view like the diagnosis of Down's syndrome and also the, the heart operation you, you suddenly realise, I suddenly realised how strong I, I noticed [my wife] is, I mean she, she, she does get upset as we both did. But I, I've actually sort of like, you can't, you know, you, I think you sort of suddenly discover why you, you know, why you ended up marrying someone and you, the admiration you've got because of the way she handled so many things. So I suppose I in a way was pretty glad that, as she had me, I had her as well. So, I think you do, you do realise how much, you know, you soon discover how reliant you are on your partner and how much, you know, you, you need each other as a family unit. It, it is something that although, it is a massive, it is a very difficult time, I think you do, it, it doesn't sort of like do anything like draw you, pull you, push you apart. It, it brings you together.

When a child or baby is ill over a long period of time it can be difficult to find someone who is willing to look after him or her. This can result in parents spending less time together as couple. One couple who had no family close by, explained that it was when tension was eased after their child's operation that they noticed stress in their relationship. They were planning to go away together without the children for the first time in five years.

There was no-one they could ask to baby-sit and were planning to go away together for the first...

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Age at interview: 3

Sex: Male

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Mother' And when you're down you just say you're down. [Father' Yeah] And it was funny because like when I was down you'd usually be OK and vice versa. And, you know, if you've got a good relationship like that then you can help each other.

Having said that I think we asked each other so much at that time [Father' Hmm] so that afterwards when things were better then we had a bad time, didn't we? You know, it just, I don't know, all the stress that we'd been through together you know, we pulled through it very much together and then afterwards we had, you know, sort of, I don't know, a few months that, I don't know, because for some reason, just a reaction I guess to going through all that. You know, I think things might have been a bit easier, I mean, because we always had, we were always taking [our older boy] with us because there wasn't anyone to leave him with so hopefully other people would be luckier to have family to, that would look after other children and maybe even give you a break every now and then. I mean, we're going away next month, aren't we? [Father' Hmm] Me and you, for the first time in five years, you know.

Father' Just us.

Mother' Yeah, just one night.

Father' Yeah, just us.

Mother' But that's the other thing like when your child is ill like that you can't really ask anyone to baby-sit unless you've got a nurse friend or something because if we'd gone out and something that happened to him we didn't, it wouldn't have been fair to the person we'd left him with. So actually when he had his operation, I think that was the first time we'd been on, we'd left him, ever. You know, because you just couldn't ask anyone to look after him, so if you've got sort of people to rely on then it'd be good.

Another couple emphasised the importance of recognising each other's needs, which can be forgotten when parents' energies are focused on their ill child. One mother explains how she had made a conscious effort to spend time with her husband when their daughter was in hospital, going out for meals and trying to spend time with him rather than allowing herself to focus exclusively on their ill daughter and neglecting her husband.

Emphasised the importance of spending time together as a couple, which can be forgotten when...

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Age at interview: 3

Sex: Male

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Father' And going back to what I was just saying a little bit earlier, what is also vitally important which is something that for 18 months at least after Dan was born, one as parents, you channel all your energies into your child. What you forget is that as a husband I have a wife and vice versa [my wife] has me and you stop talking to each other. You stop showing emotion to each other. You don't, you, you block everything that you have inside of you, tears, joy, fearfulness, you just contain it within yourself and you don't share it. Now the most, the most important people to see all these difficulties through immediately are the parents and we have to be supportive to each other. Now if you, if you stop talking in normal marriage, obviously you have problems but you know with a child with a disability if, if everything that you're doing is for the child and you become selflessness to the point of your child and you forget about yourselves then it does create problems in the future.

Now for 18 months we have, well for the first 18 months we didn't go out, we were frightened to go out. If anyone did go out it'd be one of us while the other person stayed here.

Mother' I don't think we did that though

Father' And, and you just forget that you have a life as well.

Talks about how important it is to spending time together as a couple and not to forget to...

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Talks about how important it is to spending time together as a couple and not to forget to...

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Age at interview: 3

Sex: Male

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Mother' Because [my husband] is right you do, you forget about what you had before and you've got this baby and not only is it new, he's sick and you forget about, you do forget about each other. And what the person meant to you before, sort of thing.

Father' You, you become...

Mother' You do become...

Father' You, you become selfish in the respect that as a husband and a wife I always put Daniel in front of [my wife]. And vice versa, [my wife] would put Daniel in front of me. And some people could say 'Well what's wrong with that? You're child's, is absolutely priority'. Yes, but you then build a wall between sets of parents and you need to be together rather than two individuals coping with it. So, you should take time out to still socialise with your friends. You should support each other as well as obviously your family side. Encourage each other to, you know, still go out, go to the pub, go the match, do the normal routines of a married couple. But never ever lose sight of the fact that as parents you were here before the children and when the children come on board.

Mother' It's sort of settling....

Father' It's a, it's a terrible thing to say you've got additional baggage, I don't mean that in that, in that sense but you still have to have your relationship as parents together and it's not a selfish act. You have to have time out, otherwise you'd be climbing the walls. We've experienced it in the past.

Mother' You see, before Daniel was born [my husband] and I were like that. We were very, very united and then after Daniel you sort of, it's, it's weird all, you're not, you think, try and not let that happen either. You sort of become individuals about the baby and you don't have that unitedness that we had before. Maybe in the first like couple of weeks and that, you're, you're still like that but then something happens. It's strange. And you, you're the mum and he's the dad and you've got Dan in the middle. And you haven't got that unity any more. What happened with [my husband] and I, not only did we have Daniel, we were also in the process of moving house. We didn't have a house so when we did bring Daniel home we actually went to my mum and dad's which added a strain to be perfectly honest because [my husband] felt out on a limb. Whereas I'd got my mum and my two brothers and Dan. And [my husband] felt he had nobody. And then I'm sort of not ignoring [my husband] but forgetful about him because I'm preoccupied with Daniel and I'm OK emotionally because I've got my mum and dad. Whereas [my husband] was stuck out on a limb.

She had made a conscious effort to make time for her husband and to talk to each other rather...

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Age at interview: 3

Sex: Male

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That is one thing that's really hard, is you spend time with your child and focusing on your child and you forget about your husband or wife. And I find that particularly hard because I get very focused on Miriam and also that kind of middle distance hospital thing where nothing happens and when it does happen, it all happens in a sudden rush. And it is almost like you have to switch your brain off in order to be able to cope. And [my husband] finds that very, very hard. So for us both to get out of the hospital and have some meals together and try and relate to each other rather than just relating over Miriam is important and is important for him and important for me to do for him. It would be very easy for me just to focus on Miriam and concentrate on her and expect [my husband] just to fit in. But to try and keep your marriage going and alive at the same time as having this very stressful situation is really well worth, because you are your main supports, however nice nurses and the people that you meet at the hospital, and the doctors are. It's not halfway as good as your best friend.

Is that something that started at the beginning?

Making sure we spent time together? Yes, to begin with when Miriam had her first operation because she was so new and she was our first child, it wasn't really an issue because we were only used to relating to each other and there was just this new thing that we hadn't quite got used to yet. So for the first time it wasn't really an issue, we were just kind of in each other's arms the entire time. But certainly for subsequent operations we have had to really concentrate, certainly I've had to really concentrate on it. Making sure that I do give [my husband] time because I think it can be a terrible strain on a relationship. And it is, even in a strong relationship, a strain. So to be able to make sure you're spending time with your husband as well rather than just focusing on the child, which is the natural kind of nature instinct is to look after the child because your husband can, in theory look after himself. I think it is important but hard to do.

In some cases, marriages or relationships had broken down. One mother commented that having a child with a heart condition had put an enormous strain on her marriage, which had led to their separation, but she also said that she now has a better relationship with her son's father and he has a good relationship with his children.

Another mother explains that she felt a major part of why her marriage ended was because she and her husband didn't talk about their feelings with each other. She comments that it is hard to make time for each other when you are preoccupied day and night with your ill child.

They weren't able to share their feelings and talk to each other about their daughter's illness...

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Age at interview: 5

Sex: Male

Age at diagnosis: 2

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He was hurting, My husband, I mean we were both absolutely devastated and I suppose it was, for my husband, it was the most I've ever seen him upset, you know. I'd seen him crying so much I suppose. So you know, he was hurting just as much as I was and I suppose, I think we found it difficult to share that with each other and I think the way things worked, I think because we weren't really sharing and talking about what we were feeling we were just sort of dealing with it on a day to day basis and not really discussing it that I think I didn't realise what an impact it was making on him and I found out that my husband was actually taking a condolence and talking about it with a colleague at work whereas he, he should have really been talking about it between the two of us. So it was both of our faults really. So it really has made an impact on my marriage. Since we've found out and since had her surgery my marriage has now ended and I think that it has a lot to do with what we went through.

A few couples coped by not telling each other how they felt about their child's heart condition.

They coped by not talking to each other about their son's illness for the first six months after...

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I know it affected him, he talks to other people about it. We couldn't actually discuss it at all for the first 6 months, at all. We couldn't talk to each other about it. We'd come out of the hospital and he'd say 'Do you want to go get something to eat?' and that. You know, and we'd sit there and talk about the weather and, you know, we found it very, very difficult. But then....

Why do you think that was?

I don't know. I think because it went sort of, admitting that it was happening and I think we both coped in our own ways. I coped and he coped and, you know, we couldn't be there for each other. You know, I couldn't support him, he couldn't support me. We were just about coping ourselves. So to talk about it meant it made it just that little bit more real and we might cry and I think we were almost scared to do that with each other in case we didn't stop. You know, whereas, you know, as a woman you know I've got some very good friends, really close family and I'd go 'Wahhh'. Get it off my chest and go 'Right, you know I feel better now'. Which he probably did I'd say with his sisters more than anything. I don't think he'd sort of confided in a lot of people. But yeah, to each other we couldn't even get the first sentence out without breaking down. Which maybe we should have done a lot earlier but we were too busy trying to stay strong at the time I think.

Many parents realised how much they relied on each other for support and said that having each other had been incredibly important in their ability to cope. For example, if one parent was having a down day and the other was coping well, they could support their partner.

Sometimes the balance within relationships changes and one partner finds she or he has to be the strong one. The strain and pressure on couples can be considerable when a child is in hospital, and a few parents said that they had had many more arguments than usual.

The roles within their relationship changed and she found she needed to support her husband.

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Age at interview: 4

Sex: Male

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Father' And, and I couldn't talk about it, I couldn't talk to anyone about it.

Mother' And I think the problem there was.

Father' [My wife] wanted to talk about it.

Mother' [My Husband], the stable one in this relationship, and sensible and calm [Father' Yeah] and that's a fact [Father' That's it, yeah, yeah]. And suddenly he wasn't. [Father' Yeah, that's it]. The day before we went for our appointment he was absolutely fine, saying 'don't worry about it, he's fine, there's no worries, he's, don't worry about'. And he always says that to me and I know there isn't anything to worry about. And [my husband] always mends things, he always sorts things and that's fine, [Father' Yeah] and suddenly this was out of our control. And he always picks me up and suddenly he wasn't there to pick me up. [Father' Yeah]. So I was on my own and my mother was saying you've got to, you've got to pick him up. I thought 'But I can't do, I don't know how to'.

Father' That made me feel bad as well because I knew that, yeah, usually I did sort things out, usually I do stand up and hold everyone up. But I couldn', I couldn't even think about it. And that was it. I mean, yeah, so. It was bad.

Explains the stress they experienced when their son was in hospital and that they argued more...

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It did put quite a bit of pressure on me and my partner. We sort of rowed heaps. Loads actually. In fact one night at the hospital he walked out of hospital. And I sort of said 'Come back' and he just went and I didn't see him till the next day. And then on the next day he was like 'I am so sorry'. And I was like, you know, we was under so much pressure at the time it was unbelievable but we just I think it's a natural thing you sort of take it out. I mean when we was at, when Jack was in intensive care we were downstairs having a row and sort of sorted it out and said, 'Come on, let's just go back upstairs' you know, 'We come down here for a breather and not to have a row' and as we walked through the lobby the parents of the little boy that was opposite him in intensive care were having a huge row and we just really laughed and sort of said, you know, 'God,' you know, it, it, it's just the circumstances I think. You know, I think you have to keep sight of that as well.

Parents may react in different ways and can find it difficult to accept these differences. However, several parents had been able to share roles, so that one or other could cope better with taking their child to the anaesthetist's room, talking to the doctors, or signing the consent form.

They coped in different ways which surprised them.

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Mother'Yeah, I think that the other, you know, we learnt that even though I thought I knew everything about [my husband] we really dealt with it so differently.

Father' Very differently.

Mother' I mean you have to let the other person deal with it. [Father' Hmm] I mean I thought, 'cos [my husband] didn't want to know all the details 'Oh maybe he's not interested'. And then I'd, you come to an understanding that he just couldn't cope with it [Father' Hmm]. He didn't want to know and he probably couldn't understand why I wanted to go over every detail and I wanted to know everything they're doing.

Father' All I wanted to know...

Mother' We're just different.

Father' I just wanted to know the basics and is everything going to be all right? On a very basic sort of understanding, where as you wanted to know absolutely every single thing [Mother' Yeah] that was going on. I mean, to me if somebody's given medication it's to make them better. I don't need to know what it's doing whereas you would of, you would want to understand why that medication, why that particular medication's going on.

Mother' But I think everyone [Father' Don't you?] is different and I, and I don't think you can ever predict how someone's going to react and, in a, and who's to say what anyone will do in a panic but [Father' Hmm] you can only just deal with it the best way that you can and get through it and then afterwards you have a chance to think about what's happened.

They had different ways of coping which she explains can be difficult.

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Age at interview: 8

Sex: Male

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I think it's been very hard to cope with as a couple. I mean, I'm also here now talking about it from the point of view of me having, having the condition as well. Because I've always kind of said, well, the fact that you don't know what's going to happen, that, you know, for example, I'm going to be having surgery. You know, I might die. I don't know. And I'm, I'm very good at saying things like that, you know, well, you know, Andre could drop dead playing football. You know. I always say things like that because it's a fact, I know that that can happen. The chances of that happening are not huge at this point but I will say that's a fact and he will, you know, come back with 'That won't happen'. You know, 'I just know, I have a good feeling'. You know, I think he's, he's, that's kind of been our way of coping. And sometimes I actually find that difficult because sometimes I feel that I need him to accept that it's not wonderful, that it's not always going to end up perfectly and, you know, it's just, even when my mother died from this condition 'Oh she's not going to die, she's going to be fine'. And she did. And that was very hard for me because I needed him to, just to accept my feelings and the facts and, you know, he, his way of coping is very different than mine. And that's hard as a couple. And the only thing I can say is, is just you have to talk through and be honest with each other.

Last reviewed July 2018.