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Parents of children with congenital heart disease

Telling others

It can be hard for parents to know how to tell people that their unborn baby or child has a congenital heart defect, and for others to know how to react. Many found it too upsetting at first to talk to others about it, apart from close friends and family.

Some found it hard to tell people because they either thought it was something very severe or it was a 'hole in the heart'. Many said that people did not really understand the complexity of their child's condition. One couple describe how information about their son's heart condition became distorted in being passed on to others. Some older people did not realise that advances in technology enable many children to survive and go on to lead normal lives (see 'How it affects  grandparents').

 

Explain that some family and friends didn't understand the extent of their daughter's heart...

Explain that some family and friends didn't understand the extent of their daughter's heart...

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Mother' I think initially a lot of the family didn't understand. We explained quite in depth didn't we and they didn't understand and I think sometimes we didn't really understand - but especially older people they didn't really understand the seriousness of it like certain members of my family, older generation, like they'd see something in the paper that was like a very mild problem and they'd say Oh look, you know, look, look, she's fine now. And I'd say well it's not the same. It's very different, and we got to the stage where we just didn't say, oh, lovely and we'd leave it at that. And even now sometimes I don't think people realise how serious her problems are. 

Father' I think the family do now.

Mother' Immediate family do. 

Father' Yes, But I think it's just sort of friends who we see but not a lot, I mean they're nice enough to ask but if you sort of say she's been in and out of surgery they say is that it then is she OK? And I think because they sort of think because it's been righted in that situation, then she's through the worst and that and you can't sort of explain to them that no she isn't. At this present moment in time, there's more to come. And, but that's just somebody else's problem if you know what I mean. They'll ask and say and you know their generally sort of interested but as soon as that's gone and something else happened, the problem's not there for them but it'll always be there for you sort of thing.

Mother' I think people don't know what, don't know how to approach you about it sometimes. I felt that some people completely avoided us. And some people didn't know whether to ring or write or they're frightened to ring in case something had happened. I found that people at the school used to cross over which I found really upsetting. 

 

Explain that information passed on to others about their son's heart condition had become distorted.

Explain that information passed on to others about their son's heart condition had become distorted.

Age at interview: 5
Sex: Male
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Father'  Shock, very shocked.

Mother' Very shocked. I mean, like everything else once they had, had time to think about it then it's like everybody's parents really, they're, they're your strength. They don't, they're not there all the time but they're there if you need them [Father' Hmm] to talk about anything, you know, or to give you a hand or, so family's very important when you're going through things like that.

Father'  I mean it's, when you're in the hospital and that and you get things explained to you about the condition that your son's got, then you've got to go back and explain to your parents which makes it harder again. And then they break down and you try to be strong for the wee boy and then go and tell their friends and then suddenly we found out that our son's only got half a heart.

Mother' Yeah. It escalates.

Father'  Some people don't listen and then they come back and it's like you have to deal with, the day we got married, your friend's mother was there - eh? - and we were sitting out the back in the sunshine - eh? - because we went back to the house for the reception and that and she says 'How's your son doing?' I says 'Oh, he's doing fine, like, you know, we're quite happy with him' and 'It's a shame that he's only got half a heart'. I says 'Sorry?' I says, 'He's not got half a heart' and she says 'Well that's what I've been told he has'. I says 'Look I am the son's father, if anybody should know I will know'. But it was because, well one of our, [Mother' It was...] one of our parents saw the doctor show a diagram and he took the heart in half and showed him inside it and when he'd picked it up wrong and thought he had half a heart. You know. But things like that, I mean...

Mother' They showed them the half that was actually needing the work done so they assumed that ...

Father'  That he had half a heart.

Mother'...he had half a heart. And it wasn't. Just, too much things going on in your mind all at once, you can't really take everything in so.

Several parents found that friends or relatives did not always understand why outcomes and treatment options should be uncertain. One mother describes various different reactions from friends and family.

 

Describes the different reactions of friends and family and that they found it difficult to...

Describes the different reactions of friends and family and that they found it difficult to...

Age at interview: 3
Sex: Male
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In different ways. Very differently. Some people avoided me, didn't want to talk about it at all. Other people wanted to talk about it all the time, so very, very different. As I say, some people would sort of keep on and on, they wanted answers and I couldn't give them answers, and it was very difficult to make them understand that I can't give them answers. And some people would even sort of say, well you want to find out, you want to ask, you need to know these answers. I say well they can't give me these answers. And a lot of people can't understand that and that was quite difficult to get through to people, that you know, there aren't answers at the moment, or definite yeses and no's. But on the whole, everybody was very, very supportive. But as I say, I think, some people found it very difficult, they just want to avoid talking about it. And just almost ignored the pregnancy in some ways, like because there were problems, they didn't want to ask me how the pregnancy was going, didn't want to talk about it at all. And I suppose, just everybody sort of handles it in a different way really. But no very mixed sort of feelings but nothing awful, I can't say that anybody was awful at all. But everybody sort of deals with it in their own way. 

Sometimes another family member has the condition, which can influence their reactions. One mother describes how they overcame the problem when a senior member of her family disagreed with the treatment her son was being offered for his bradycardia.

 

Describes how they overcame the problem when senior members of her family disagreed with the...

Describes how they overcame the problem when senior members of her family disagreed with the...

Age at interview: 7
Sex: Male
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Other people's questions when they just want to know from an information point of view and you think you understand then actually they're quite helpful to be having those questions because it hones your own understanding. When, as we experienced, my son's great uncle also is bradycardia and his consultant has never implanted a pacemaker in him and strongly feels that a certain type of bradycardia should not be operated on. And as one of the country's leading exponents, or one of the first pacemaker implanters his knowledge base had been very important. That added a huge pressure because we were then being persuaded by members, senior members of the family, that it was incorrect to have the pacemaker and because we only had a 48-hour period in which to prepare for the operation, that, that strain was horrendous.  

And I'd say there you need to try to speak to the relevant consultants as fast as possible. And by that I mean if there is a close family member who is trying to contradict the advice that you've been given then get to speak to their consultant as fast as possible. And in our case they couldn't have been more helpful. As it happened his consultant knew about my son's case because the medical world is quite a small world and so our consultants emailed the files over. There was a discussion I was able to telephone, I was able to hear exactly what their opinion was and in fact the current consultant, the great uncle's current consultant felt that the operation was imperative. And I therefore was able to say to him 'Please could you inform your patient why you say that? And as fast as possible because the stress that we're experiencing is huge'.

At a very stressful time?

A very stressful time anyway. So to have contradictory advice coming through is very hard.

When parents discover during pregnancy that their child has a heart problem, the diagnosis and the outcomes may be uncertain. Parents had to cope with telling family who were looking forward to the birth of a grandchild, niece or nephew. Many were shocked and upset but at the same time supportive.

A few parents gave their family only limited information until they knew the full diagnosis and tried to be positive and reassuring because they didn't want to worry them.

Some mothers found it upsetting to cope with questions or interest in their pregnancy from people who didn't know. One mother explains that she stopped telling people about her baby's heart condition during pregnancy because she realised it upset them. Another decided to prepare people by saying that her baby might need surgery at birth, so that they weren't shocked or alarmed when her baby was born.

 

She stopped telling people about her baby's heart condition during pregnancy because it would...

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She stopped telling people about her baby's heart condition during pregnancy because it would...

Age at interview: 7
Sex: Male
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Well, yeah, because once you're getting into your pregnancy it becomes obvious people are very interested, they want to know when's the baby, when's the baby due, how are you feeling. And at first I would launch into the full, into the full story and tell people all about it and how terrible it was and then I saw what a dreadful effect this was having on people. It would upset them. So after a while I just stopped telling people, I would just pretend there wasn't a problem, that everything was normal and but really inside it was, I was feeling terrible.

Sometimes people don't know what to say or how to react. Some parents said friends had avoided them or were too afraid to ask. Others were optimistic and encouraging. One mother describes telling friends who were shocked and frightened for them and explains that when one friend was honest with her about how she felt it was a great help to her.

 

Describes telling friends who were shocked and frightened for them and explains that when one...

Describes telling friends who were shocked and frightened for them and explains that when one...

Age at interview: 4
Sex: Male
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Mother' I think as we got stronger dealing with it and it wasn't such a shock and it all sunk in [Father' Yeah] I'm talking now sort of like March time, just before it was cancelled sort of thing, I know I was able to say, or after it was cancelled 'He's, he's got to have open heart surgery, he's got to have a heart operation'. Now to me I was saying it and thinking 'Hmm, I know exactly what that means' but just like, I remember saying it to our neighbour and she was 'Oh no, that's oh'. And of course they want to say 'Oh that's awful, I'm so sorry' but it, it is awful but they don't really want to say awful because that makes it sound frightening. They were all frightened for us I suppose, or shocked because they've all got children.  

And they're thinking 'What would we do?' [Father' Yeah] And somebody who I've known 20 years or 15 years actually had the courage to say to me and I used to work for her and look after her children as a nanny said, and she's the only one that said it to me but I bet many people thought about it, 'Oh I'm so glad it's, it's not my daughter, I don't know  [Father'  Yeah] what I'd do if it was mine. I can't imagine what you're going through'. And it was actually a relief because everybody was thinking 'Oh, glad it's not mine' but she said it and she said 'I'll help you in any way can but I don't know how to, I can't imagine what I'd do if it was one of my girls'. And she was lovely, she was a great help.

Some parents told their work colleagues and found they were very supportive. One mother felt it was important that people at work knew what she was going through. When one father told his work colleagues, he was surprised by how many of them knew of a child with congenital heart disease, and they were doing well, which he had found comforting.

 

Feels it is important that people at work should know what you are going through.

Feels it is important that people at work should know what you are going through.

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But everyone was really, I mean work were great and said 'Take as much time as you need'. So all those things even though they're not, you know, they're not providing immediate sort of support at, at the coal face as it were it's really important to know that everyone's saying 'We're thinking of you', and, 'Take the time you need', and lots of people sent great books that they had. 'Oh this is a fantastic book, you'll be able to read it even though you'll be really upset or whatever'. So I got sent lots of things to kind of occupy me and things and that was good.

I think it's important to talk to people about it. I mean I know that depends on how you are as a person. I know a lot of people are a lot, probably a lot more private than we are but I think even though it might be hard to talk about it and it might be upsetting, actually it does help because actually being honest with people about what's happening, when it's going to happen, the uncertainty of it all and things is really helpful. Because even though you might be 'Oh why should I tell people at work?' this is very personal actually it is important because it's going to affect your ability to be at work, your performance and things like that and I think probably being open about what's happening it was really helpful for us anyway because it meant that people could offer support and I would always do the same again I think. 

One father did not tell his family, who live abroad, for the first two weeks after being told the news because the hole in their baby's heart might have closed naturally. He then wished he had told them earlier because they were reassuring and supportive.

Another couple did not tell anyone about their son's heart murmur until he needed heart surgery when he was three and a half years old. Surgery might not have been necessary and they didn't want their son to be treated any differently.

Parents found it difficult to talk in detail about their child's heart condition because people didn't understand, or it was too technical to explain. One mother recalled that when her hairdresser asked how her baby was, she didn't know what to say, because it was something too emotional to be discussed in a hairdressing salon. 

Another used to tell acquaintances that her baby had 'a problem with his heart, but he's fine' because otherwise she would need to explain it in great detail and several times. As their child got older, parents told others only as they needed to know.

When things are uncertain in the hospital after birth, or a child is suddenly admitted to hospital, parents found it difficult to keep everyone informed and to know what to tell them. One couple explain that when their daughter was taken in for emergency surgery, they let others know by telling one friend who told others and who kept everyone updated on progress.

 

Explains that it was difficult to know what to tell work colleagues when they were in hospital...

Explains that it was difficult to know what to tell work colleagues when they were in hospital...

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Since we've been home it's been great because we've been into work a couple of times to visit and everyone's really, really friendly and really pleased to see him, pleased to see me and so on. But it was difficult when he was in hospital and when we didn't really know what was going on in terms of people who aren't involved will ask you things like 'So, how long's he going to be there?' And the problem is that nobody can tell you that. Because when a baby, especially, you know, a newborn baby's critically ill like that nobody can give you the answers.  

And to explain that to someone else sometimes is quite difficult. If they say, 'So, you know, what's wrong with him?' or 'Why can't he come off the ventilator?', all those questions that it's like we can't answer those and the consultants at the moment, at certain times they couldn't answer those questions either.

So it's been, since we've been home it's been great and they've been, everybody's been, been great and, they were supportive in their own way when we were still in hospital but it's very difficult for people who aren't directly involved to know what things to ask and how to react and so on.

So your not just dealing with your baby and your own emotions, there's also everybody else?

Yeah, that's right, yeah. And sometimes that's as hard for you as it is for them. They don't know how to react to what you're telling them. You don't know what to tell them because you know that they're not going to know how to react to what you're saying. So in some cases you just won't tell people until a little bit later on and you just like leave them, no news for a while because you just can't deal with the other emotions as well as your own.

 

Explain that when their daughter was taken in for emergency surgery, they let others know by...

Explain that when their daughter was taken in for emergency surgery, they let others know by...

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Mother' We were very lucky that we, well we didn't organise it but it just happened that way that this network of people was building up and we would phone [my husband's] friend, his best friend [name], [Father' Hmm] and he would phone out specific people and they would then phone on other people [Father' Hmm]. Otherwise the phones would, just didn't stop ringing and when you come home you don't want to be going through what's happening at hospital and it was good that they'd sort of arranged this so that as soon as a bit of news came out of hospital it all got out to everybody [Father' Yeah] without us having to do it.  We knew if we phoned, made one phone call then everyone would be told. [Father' Hmm] And that was a relief to not have to do that as well. [Father' Hmm] That was a relief.

And how did friends react? You told me a little bit about coming home from hospital but in general how did they react?

Father'  I don't' think they knew how to react.

Mother' No. I think the first time when it all happened and it was a shock. We were so long in hospital that we didn't see the impact of what happened to our friends. But I know the messages that we got back were in flowers and everything. They were shocked and didn't know what to do. But then also I can remember them coming round and saying 'Oh, is that her? You know, we expected like tubes and stuff' [Father' Hmm] and there she is sat on the sofa and they [Father' Hmm] they said 'Oh, she's like, she's normal then?' And we said 'Yeah you've just got to be gentle with her scar and apart from that, that's it'. [Father' Yeah].

Mother' They were like us, they didn't know ...

Father'  We were na've...

Mother' What she was going to look...

Father' You're na've about it until it happens to you, aren't you?


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Last reviewed July 2018.

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