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.
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...
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....
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...
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...
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...
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...
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.
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.
Comments that she found it difficult splitting her time between her children when her baby was...
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.
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.
Last reviewed July 2018.