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Parents of children with congenital heart disease

How it affects siblings

When a child is diagnosed with a congenital heart defect, the whole family is affected. Here, parents explain what they told their other children, how they reacted and the impact they felt it had on them. The parents we interviewed did not think there were any long-term problems with their other children although we know that in some families having a disabled or sick child can sometimes make other children feel neglected and less important.

Parents explained to their younger children in simple language and told older children in more detail. A few had used reading materials designed to help siblings understand what was happening to their sister or brother; most had been helped.

 

Describes how her son had found it useful reading a booklet produced by HeartLine for siblings.

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Describes how her son had found it useful reading a booklet produced by HeartLine for siblings.

Age at interview: 2
Sex: Male
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I think I just said that you know his brother's got a poorly heart. Actually HeartLine gave me a booklet specifically for siblings and I think I sat and read that to him again and again and again and again, about every night for about seven weeks. You know and it - funnily enough this little booklet did become really important to him. You know and he's still got it now you know and he does still go on about it now, so I think that really helped and it was just like you know Billy Bear's going into hospital to have his heart fixed and Billy Bear's brother is feeling this and this and you know, you know it's just a little story for him, but he could relate to it.

Many parents tried to involve their children in what was happening to their sibling by taking them to hospital appointments or to paediatric intensive care. Some worried about their children's reactions, but were relieved that they had coped much better than expected.

 

They took their six-year-old daughter to some appointments and check-ups so that she could see...

They took their six-year-old daughter to some appointments and check-ups so that she could see...

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Mother'  I think [our elder daughter], she did come to a lot of appointments and check-ups because we felt the need, that she needed to be there, to see what was happening and rather than be explaining to her what was happening with her sister, we felt that if she saw what was happening like the ECGs and the check-ups, and it actually made her feel a bit more special 'cos when she went back to school, she sat and told the class, where she'd been so it was a bit of, they made a bit of fuss of her.

Father' And it also stopped her worrying about it because she could see'

Mother' What's happening

Father' When Caitlin went in just for an ECG or something that she wasn't being hurt. She wasn't, she was just getting a little test done and it wasn't upsetting her, 'cos that was always a big fear of the older one that her little sister wasn't going to come back or was going to get hurt or whatever, which is...

Mother' she was in pain or discomfort or'

Father' And it was one of the nurses said, well, one time why don't you bring her with you, 'cos we had expressed a concern, and they said, yeah bring, bring her down and let her see everything that goes on and we'll show her around. They were, they were really good.  

 

They started to explain that his baby sister had a problem when they found out during pregnancy....

They started to explain that his baby sister had a problem when they found out during pregnancy....

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Father' We sat him down and sort of I mean, obviously he knew that his mum was having a baby, and you know, he was sort of looking forward to it, in a way although he'd been on his own for a while, that was a worry for us, but we just sat him down basically and told him his sister or whatever it may be at the time, because we wasn't sure, would have a, would, when she was born would have to spend a bit of time in hospital because she had a problem, she had a poorly heart, basically that's what we told him. And although we sort of sat him down and told him, because we were dreading telling him, to be perfectly honest, and when we sat down and spoke to him he sort of went alright, OK and off he went and played on, 'cause that's what kids do. And we looked at each other and said that weren't as hard as we thought, but we wasn't sure he took it on board. So we left it a couple of weeks and my wife asked him again, do you know what will happen when the baby's born, and he said, yes, you know, she's got a poorly heart, she'll have to spend time in hospital. So he did take it on. And he, and he, and he's been informed ever since. I mean, we took him in, took him on to intensive care, after the operation and he'd seen her before and then after and he just sort of looked, had a look and then he said can I go out now and go and do something else?

And, and you know every time we come up we popped in, sort of stood on the chair and had a look round, made sure she was OK and walked back out. And it was so funny to see wasn't it. He just sort of, it didn't, it didn't knock him out of his stride, and which well we didn't think it did. He's never sort of shown that, has he?

Mother' But we would never have taken him in but, our cardiac sister advised us to do that and we thought she's got the experience, she knows what she's talking about, so we tried it and she was right wasn't she?

Father' Yeah, absolutely.

Many were amazed at how well their children coped with seeing their sibling in intensive care. One mother describes how her son liked going to the hospital with her for his brother's appointments because there was a playroom with lots of toys and the nurses made a fuss of him.

 

Describes how their daughter was looked after and how she coped when her twin brother was in...

Describes how their daughter was looked after and how she coped when her twin brother was in...

Age at interview: 4
Sex: Male
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Mother' But we were advised, I did speak to her teachers at school to keep her as busy as possible and to keep her routine. And, and everybody was very helpful and obliging and getting her to and from nursery and picking her up and they were very sweet with her at school and, and they didn't go over the top but they just kept half an eye on her. You know, just, 'cos I suppose where's my brother sort of thing'. But she made a fantastic card for him [Father' Yeah, yeah] and she was made to feel very special.

Father' Yeah, it didn't last very long. Luckily when he was out. She was ...

Mother' And when she came in to see him, when he'd just had it done, she'd seen him, fine, yeah that was fine, right my, my friend's over there I want to go and play on the park up on the roof with my friend. And, she, she, she coped with it as a matter of course. Again it's, I'm a very emotional person, too much probably, and I'm thinking how I feel, how, how must [name] feel, 'cos that's how I feel. And I didn't want them separated because I don't want to separate them, they're friends they're, they're inseparable and yet that's how I would feel because I wouldn't want to be. That doesn't mean to say that's how they feel at all. But I'm imagining it. So I'm putting my emotions and feelings into it. And I think [name] had lost her twinkle, she had a nice time and yes she didn't want to say goodbye to me, she was, but once she was gone...

Father' Once she was gone she was, she was OK.  I mean, she...

Mother' She loved being with you, didn't she?

Father' Yeah. She was OK.

Mother' And, and I took her to nursery. We came back on the Wednesday and I took her to into nursery on the Thursday and made a lot of fuss of her of course and, didn't really, they did talked about, you'd hear them talking about it 'Oh, [son] was that when you went to see Mr, was that when you went to have this and what did they do?' And he'd be very proud telling her, but she wasn't left out in any way. She's, she's, she's got a wonderful nanny. So no she wasn't, she, and, and she did cope with it better than I thought she would.

 

Describes anxieties about sibling rivalry and how the hospital made sure children had fun when...

Describes anxieties about sibling rivalry and how the hospital made sure children had fun when...

Age at interview: 3
Sex: Male
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He coped with it very well I mean, when, when Sam was born, he was 20 months old, so it was going to be quite difficult anyway just purely having twins. Two babies coming into the family, from having solely my total attention all the time to having very little attention and he did cope with it very well. We had the odd spells where, you know, he got a little bit jealous and it was difficult to juggle my time. I just didn't, I could have done with two more of me really and it was very difficult. That was one thing that used to upset me quite a lot because you know I wanted to spend time with the others and I just couldn't. But I don't, although we were obviously up and down to the hospital and lots of you know, trauma going on if you like, I don't think it probably affected him a lot more than if it would have done just purely if I'd had twins, you know. 

Yes, you know, there was a lot going on and a lot to cope with and you know he was being dragged to the hospital and that but, in I think in some ways that possibly, funny thing to say, but possibly helped a little bit because for him, I think he found it quite exciting. There were lots of nurses around, making a fuss of him and playing with him and there's a big playroom on the ward and he thoroughly enjoyed that. So, yes I mean it was hard for him, but I think, it would just of, it would have been as hard if it was just, a pure fact of having twins really, so I don't think it affected him in a great way. He doesn't seem to have any ill effects from it.

The only problem I found now is we don't go to the hospital so much and they actually miss it, because they used to enjoy all the playroom and everything and there's never a problem if I say, you know, we have to go to hospital today and there's never a problem that they don't want to go. You know, they're quite happy to go and its usually a comment like, 'oh can I play with the train set when we get there? And can we do some painting today or colouring, you know, so it doesn't seem to have had any ill effects on him that way. He's not frightened of hospitals not concerned with going on the ward. He's quite happy with that, you know and yeah I really don't think, as I say, I think at the time, yes, you know, it was hard to juggle the time, to spend with him, and but I think that would have been difficult just purely having two babies coming into the family really. So, not really too bad.

 

When the family live far away from the Children's Heart Hospital, some parents could take their children to stay with them at the hospital. Others arranged for relatives to look after their children. One mother explains how her children, who had never been to a hospital before, felt a bit left out and didn't really understand where their parents had gone.

 

Describes fear that siblings would feel neglected when their parents were spending time at the...

Describes fear that siblings would feel neglected when their parents were spending time at the...

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They knew that he was going for his second operation. We had to go a couple of weeks before for him to have a catheterisation so they could actually look at the heart and make sure everything was OK before his second stage and we did take one of the children with us. Our oldest wanted to come down and he actually came. I think that's made it, that's helped because he, he knew that mummy and daddy weren't down there having fun, you know, it was a hospital and he wasn't missing out on anything and my other child she's quite happy to stay and be with Nanny, so. She didn't like looking at the photos of, of our son with the tubes in, she didn't, she didn't like that. Whereas our older child was 'What's that for?' You know, 'Why has he got this?' and 'What does that do?' and you know he was more questions. Yeah.

So they have reacted in quite different ways?

Yes, yes, yeah.  They love him to bits though now.

Do you think it's had any affect on them, you know, this attention being focused on him?

I think it did at first, it was hard at first 'cos obviously I'd been away from the home a long time and my husband was, and when I was in hospital still expecting, 'cos I was there for 4 weeks, my husband was coming every day to come and visit and obviously they found that hard 'cos it was just my mum here. I did, I do feel that they felt a bit left out. But we made up for it when we got back, yeah. We let them know we weren't on holiday having a nice time.  

And do you think that's what they thought?

I think so, yeah, yeah. They didn't really know where we were, you know, what we were doing. Yeah. 'Cos, luckily we've never had to go to hospitals as such before. They've never really seen hospitals or had to go to them.

Informing siblings of what is happening and giving them support can be more difficult when things are uncertain, for example, if children stay in hospital longer than expected, or before diagnosis, if they are admitted to hospital suddenly with symptoms.

Parents recognised a temporary impact on their other children but saw no long term ill effects, even when their sibling's illnesses and treatment continued. Sometimes siblings felt left out because of disruption to normal family life, parents being away from home and spending more time with their ill sibling.

 

They feel their older children have adapted well and they haven't suffered any long-term adverse...

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They feel their older children have adapted well and they haven't suffered any long-term adverse...

Age at interview: 3
Sex: Male
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Once we knew about Felix, well we actually went on holiday the following day for a week and we, we just told them the truth really that he, that he, he had a bad heart and that he'd need to have surgery when he was born and that we didn't know whether they would be able to make him better or not but that they would do his very best. And we did say to them that we didn't know whether, whether he would live or not. And they know that the condition he's got that it can't be corrected, that you know they can alleviate the problem, but they know that long term he's never going to be exactly like they are.

But they've been very accepting really. You know, they've adapted well and although you know for those, really the first 10 months although there was a lot of disruption we were fortunate in that we still saw them every day. My mum was very good, she helped them a lot of the time. And I wouldn't say that it has had any real adverse affect on them but, but Felix has taken up a lot of, a lot of time and as a result we've probably had less time to devote to them and he's not, he's not a bad sleeper now but, but in the past, to establish any sort of sleeping pattern was very difficult so you would be sort of disturbed in the night for a lot longer than you'd expect with a baby without problems.

Some children became very protective, worried, or sad about their brother or sister. One toddler was concerned that something would go wrong with his own heart. But over time parents recalled that their children had reverted to treating their brother or sister normally. One couple commented that their six-year-old daughter worried that her sister was going to die and that every trip to hospital for checkups or for minor illnesses was seen as something more serious, but this had got better with time. Another couple said that a few weeks after his sister's operation, their son had been anxious that his mother wasn't going to be coming back when she left him at nursery or other places, but after she reassured him this passed.

 

Describes the effect on her son of his younger sister's heart condition.

Describes the effect on her son of his younger sister's heart condition.

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I think, I think it's really important to talk to the other children about, you know, obviously what tends to, I expect what tends to happen is that your other children are older, certainly in our situation that, that was what so even from the beginning he knew that she had problems. So I don't think he was aware in the pregnancy or whatever but fairly shortly afterwards we were going up to the hospital with her, to the specialist hospital, and he didn't always come with us. Sometimes he came with us, sometimes he didn't but we always told him where we were going and why we were going, that we knew that she would need an operation and he had some understanding of what an operation meant. He'd sort of seen other people who'd had other operations or whatever so he even from very, from when she was very young he knew that that would happen so he wasn't sort of totally shocked when it did happen. We said, you know, 'Granny and granddad came and stayed with you when mummy had your sister. They'll come and stay with you in the same way when, when she goes into hospital for her operation'. So he, he sort of knew that that would happen and it wasn't a big sort of surprise to him.  

He still found it hard. He still felt, I think he felt really worried about her actually. I mean, he, he, you know, he obviously he felt a bit left out as well and that was part of it but I think he genuinely, when he saw her, certainly when he saw her after the operation, obviously we didn't let him see her when she was on the, cardiac intensive care but when he saw her after the operation he saw how pale and tired and, you know, upset she was he, he was quite worried about her. He was scared for her I think. So it's important to involve them.

Has that changed over time?

Yes, he's, he totally treats her as a normal little sister now. Yes, I mean he is quite protective of her but I think he would have been anyway really because of the age difference between them, 3 years between them, I think he would always be a bit protective but, no, he doesn't, he, he doesn't, I mean he, he sometimes tells people [his sister] had an operation, she had a hole in her heart and it's been sewn up and things and she's got a scar. So, but he says it very matter of factly now. He, he obviously doesn't think that she needs any extra concern because of it, so. 

One mother explains that her daughter when she was older had to do a poster at school of major events in their life, and one of the events she had chosen was when her sister was taken to hospital to get an ECG in the middle of the night.

Sometimes younger siblings wanted attention too. One father describes how his toddler wanted to be seen by the doctors for imaginary illnesses. A couple recalled that their toddler complained of tummy aches every night after her brother had been in hospital. Another mother had to give his twin brother fake medicine because he felt left out.

Several parents said it had been difficult to leave their other children when they were staying in hospital with their sick child and had found it hard trying to divide their support and time between their children. Some tried to keep family life at home as normal as possible for their other children while their child was in hospital. Parents had taken it in turns to spend time with both children, used extended family support or had done something special with their other children to let them know they weren't forgotten.

 

Explains that it was hard leaving her toddler at home when her baby was in hospital.

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Explains that it was hard leaving her toddler at home when her baby was in hospital.

Age at interview: 12
Sex: Male
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But once it was diagnosed and the surgeon said what was going to happen, how it was going to be done, it was a matter of waiting for the surgery in the hospital and then having surgery... and then sort of my parents rallied round and came down. My husband's parents looked after my elder girl for a while and then my parents took over and my husband's parents did sort of the last stint. And that was really hard, to leave my toddler, but I couldn't, I couldn't leave my baby because' and that was hard, that was really hard.

 

Comments that she found it difficult splitting her time between her children when her baby was...

Comments that she found it difficult splitting her time between her children when her baby was...

Age at interview: 2
Sex: Male
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One of the things I do is I really beat myself up over you know when I'm leaving [my oldest son], you know I'm not giving him as much attention as I should do, and you know but you can't you know, you can't breast feed all night and all day and do medication and look after a sick baby and be the perfect mum to your other children. You just can't and I think that's where you have to find someone to help you. You know if it's a neighbour or your mum or your sister or your auntie or your cousins, best friends, nephews, next-door neighbour, just find someone who can help you and let them take on that role just for a while. Because you can't do everything, you know, and I know you feel bad about it but you've just got to go with it really.

In two cases, children had witnessed a sibling collapse due to their heart condition and their parents in a panic. At such times the help of other family members had been invaluable for talking to and supporting siblings, while their parents were tied up looking after their sick child. Neither parent felt that these incidents had had any lasting effect on their children.

Support from grandparents or other family members for siblings at times of crisis or during operations was very important in enabling children and their parents to cope. Support from the school and the hospital was also invaluable. Support groups can also support siblings. One mother explains that her son had benefited from going on outings and meeting other children who had brothers or sisters with a heart condition.

 

Explains how her older son had benefited from the support group his mother had joined.

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Explains how her older son had benefited from the support group his mother had joined.

Age at interview: 2
Sex: Male
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But the one thing I did find really useful actually even though eventually I didn't find them useful, support groups, I think [my oldest son] found it really, really helpful that other people at then support group had brothers or sisters that were poorly and you know he used to go along and see children with nasal tubes and oxygen and he used to think this is really quite normal actually. You know there's other people and it's really quite normal and these people here have got a brother and sister that are always ill they feel the same as I do. And you know I think he started enjoying going to these little things.

He used to go to the support group?

Oh yeah, all the time, and we went to the zoo, and we went on outings and we went away for the weekend with them and you know, I'm the sort of person that I'd never do anything like that before I had Joe, never. You know and now I go on anything that's going now so [laughs] but I think [my oldest son] gets an awful lot out of it, an awful lot, a tremendous amount, even if I don't, he does. And it's you know that's good; it's something that's positive.


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Last reviewed July 2018.

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