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...
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...
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...
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...
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...
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...
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...
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.
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...
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.
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.
Last reviewed July 2018.