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Parents of children with congenital heart disease

Parent's reactions to their child's diagnosis of congenital heart disease

Nothing can prepare a parent for the shock of discovering that there is something wrong with their unborn baby or child's heart. All parents want healthy, perfect children and to be told that something as fundamental as the heart is damaged can be devastating. When parents we interviewed were first told about their child's diagnosis, they said it seemed like the end of the world and everything looked very bleak.

Parents who were looking forward to the birth of their baby suddenly had their joy of impending parenthood turned upside down. The excitement of planning for the birth of their baby disappeared and was replaced with fear and anxiety, though one mother who had felt devastated when given the diagnosis said she became more positive and hopeful as her pregnancy progressed. 

Several mothers found it difficult to bond with their baby during pregnancy through fear that they might lose their child. Sometimes these fears lasted a long time after birth. One mother explains that when she found out at 20 weeks that her baby had a serious defect she didn't feel able to plan for his birth or the future until he was about two years old.

 

Explains that finding out at 20 weeks that her baby had a serious defect she didn't feel able to...

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Age at interview: 3
Sex: Male
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It was very, very hard, it was one of the worst things that I've ever had to go through. At 20 weeks being told that your baby might not even survive, it's horrible.

So how did you get through the rest of it, your pregnancy?  Is there anything that helped you?

Yeah, we, I, what helped me was that I could give this baby a chance. That, there's reasons for everything that happen and that's what kept me going was, I can give this baby a chance. And maybe as well what, what, another thing that I was thinking was Daniel's heart condition was, was very severe, is very severe and maybe when this baby's here it, it would help other children. If they couldn't perform something on Daniel to, to, to make him live or to help him with his condition then maybe they could learn from that for another, for another baby in Daniel's position.

So that's what kept me strong, the whole time, that I could give this baby a chance and whether Dan was going to survive or live I knew that I was giving him that opportunity which was probably the most important thing for me. And family got us through it as well because it is and, you've got people in the street coming up to you saying 'Oh, how long have you got?'  And you, well I never ever said 'Oh I've got 6 weeks but...'  I just smiled and said 'Well I've only got 6 weeks to go and don't know what I'm having'. It is, I have to admit to you it's, it's, it is horrible when you're expecting a baby that's going to have this problem because you, you can't plan and you can't go and buy things and it's not like having a baby. You sort of, you've got this bump but you're detaching yourself the whole time, the whole time. Even when Dan was born I found myself detaching myself which I'm only just probably over the last year beginning to come to terms with.  

Some mothers described feeling that what was happening was out of their control. Parents were frightened about the unknown and what would happen at birth. One mother who discovered that one of her twins had hypoplastic left heart syndrome said she was cut off from the contact with midwives she could have expected in a normal pregnancy and it felt as though she was going through a bereavement. Some mothers experienced feelings of 'Why me?' and began to worry about the cause of their baby's heart defect (see 'Your Ideas about causes').

 

She felt like she was going through a bereavement and was cut off from the contact with midwives...

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I still had another 4 months and you were constantly worrying about is the other twin OK and what, what was going to happen at the end of it because we didn't know what symptoms it was. All we knew it was a heart defect. We didn't know exactly what the defect was or if  there were going to be, have a disability or, so we still didn't know that at the end of it. So it was very hard. It wasn't a happy pregnancy. No, no.

How did you feel through the rest of your pregnancy?

Very low. Still wondering what, what was going to happen at the end of it. I know I wanted to give, give it everything that I had but it was still very worrying. It's still going for the surgery after, I still didn't know if it would make it or what was going to happen. It was very unknown. And there wasn't really anyone to talk to. So, it was like basically left, left on your own to get on with it. It was very hard on all the family.

Could you say a bit more about there wasn't anybody to talk to?

Yeah, well the midwives, once, once the midwives knew they didn't, I didn't really see a midwife because they thought there'd be enough doctors and things involved and I had to keep travelling to a special hospital to have my scans. I had, I got scanned every other week and there was a lot going on but there wasn't really anyone to talk to.

When I first found out I, I felt as though I was going through a bereavement. That's, that's the only way I can describe it. It was, it was just awful. And no-one to talk to about it.

Some fathers found their own distress so great that they could not give their wife proper support. One father describes how his wife needed to be able to talk about what was happening to them, while he couldn't talk to anyone about it until their baby was born. For another father who recalled feeling numb, devastated and shocked when his wife told him that their unborn baby had a heart defect, an additional problem was the effect the news would have on his mother.

 

Said he found it difficult to handle the situation or to talk to people it until their baby was...

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Mother'  And then they put us in touch with the Cardiac Liaison sister and she actually phoned me the day after and said about coming out to see us. And she came out to see us. And it was really upsetting. You didn't want to talk to her did you?

Father'  No I found it quite difficult to handle the situation simply because the child wasn't there and I just didn't feel in control which I like being. I sort of have to be in control sort of thing, but I found it very difficult to sort of handle that sort of situation when the child wasn't there. And I just sort of took a back seat. But I knew it was helping [my wife], I mean, I knew it was helping my wife, talking to other people, who were sort of in a similar situation, being with other parents who have been in our situation. But it wasn't helping me. But I knew I'd be OK as soon as, as the child arrived. I knew that as soon as my daughter arrived - I'd be fine.

 

Describes feeling numb, devastated and shock when his wife told him that their unborn baby had a...

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Pretty numb aren't you really you know. I can remember my mum had come down and you know it was, and my mum was really excited about getting, seeing the baby on the scan so they, I think you and your mum went for that scan didn't you, the initial scan. And I just, oh and then you phoned me at work and uh, yeah I was just sort of numb and devastated. You know because it was so far into the pregnancy as well so, yeah. Yeah pretty shocked.

Feelings were mixed about getting the diagnosis during pregnancy. One mother wished she hadn't discovered her baby's heart defect antenatally and had been able to bond with her baby and have a worry-free pregnancy. Another was glad that they discovered her son's complex heart condition during pregnancy, as it meant that the best possible medical care was given to him when he was born and she had a chance to prepare emotionally. One mother whose baby was diagnosed when she was three weeks old said she was glad she hadn't found out in pregnancy.

 

She didn't bond with her baby during pregnancy because she was afraid she would lose him and...

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Age at interview: 7
Sex: Male
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It was, it was appalling to be honest because I knew that, I knew that the baby did have a very serious heart defect. He was going to need surgery very quickly after he was born within the first few days of life and we also knew it was major heart surgery and there was a possibility that he wouldn't survive. And therefore I didn't really plan to have a baby from that stage on. I was so afraid that we were going to lose him and I didn't, I didn't buy any equipment and I didn't, I didn't plan, I didn't, I found it very hard to cope with and I did become very depressed. I found it hard to talk to other people about it, to have to explain it to them just made the situation seem  seem even more scary than it was. So what I think, I shut down, I shut down quite a lot for the rest of the, for the rest of the pregnancy.

So, and as I say for me, I didn't really bond with my baby at all before he was born because I was afraid to because I was afraid that I was going to lose him. So I just didn't want to feel that I was getting too attached to him. Which is a terrible, a terrible situation to be in. People who've said to me since, 'Oh wasn't it marvellous that he was diagnosed in utero so that you knew before he was born and, yes, for his sake it was marvellous because the doctors were prepared for him. As soon as he was born he was taken to the special care baby unit and monitored and kept in the incubator and that made him, that may well have helped for, for his, for the future for him. Sometime babies don't get diagnosed straight away and they can lose precious, precious time. But for me, I wish I hadn't known. I wish I'd had a blissful ignorant pregnancy and really been able to get attached to my baby before he was born. 

 

Is glad that they discovered her son's complex heart condition during pregnancy, as it meant that...

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I think it, if it is an antenatal diagnosis what my emotions were at first were I didn't want to know. I didn't want to have been told this piece of information because that then gave me a decision to make that I didn't want to have to make but with hindsight that antenatal diagnosis actually saved his life.  If he hadn't had that diagnosis he would have been born at a different hospital where they didn't have any paediatric support at all. So, you know, it just would have been horrible and because he was, he was that unstable in an intensive care environment without any support at all I don't know what would have happened. So I think in terms of advice to somebody who's had an antenatal diagnosis, it, it's absolutely horrible at the time but it is the best thing to know because then that gives you the time to prepare emotionally but really importantly it means that the right medical support is on hand for your baby the minute that they're born. And they're monitored from the minute that they're born which gives them the best possible chance in life. 

 

She was glad she didn't find out in pregnancy that her daughter had co-arctation of the aorta and...

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Mother' Because that's the thing we found was. We. I thought, oh I think we both thought that if you had a sick a baby than you always knew about it. But we didn't realise was I'd say 80-90% of the parents we met in that had no idea there was anything wrong with your children 'til they collapsed, or until they became ill. It wasn't found when they were pregnant. It was and I personally am pleased that what with what happened, I wouldn't have wanted to know when I pregnant, there was something wrong 'cos to me, I gave birth to a healthy baby who got ill and then she got better. Not I gave birth to a poorly, sickly baby then I didn't know when she gonna get better. I just, although it was dangerous, and frightening at the time then I'm glad it happened the way it did. [Father' Yeah]

When parents discovered after birth that their child had congenital heart disease, many experienced disbelief, denial and shock because their pregnancy had been normal. One mother couldn't bear to acknowledge there was something wrong with her baby, while her husband felt confident it would be repaired and then all would be well.

 

When she was told there might be something wrong with her newborn baby she thought doctors were...

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Age at interview: 2
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And he said that was actually a problem, that you know Joe's stats were quite low and he was quite blue. And to be honest with you I didn't even know what stats were, you know. And I just said what causes that, and he says "well we're not sure, it could be his lungs, it could be his heart, you know, we don't really know, but we've had to transfer him to another hospital and we've had to put him into the ITU department and, you know, we'll see what happens. And to be honest with you, I just didn't really take it in. You know I just, I was shocked really, I just wasn't expecting it because everything up until that point had been perfect. I had a perfect you know pregnancy, a perfect labour, everything was perfect, and then to be honest with you I couldn't see anything spoiling it, so I didn't take any notice really.  

And then I asked "could I go over to him" obviously, and they said "No, you've just had a section, of course you can't" and then so I just thought there's nothing serious, they don't look worried, I'm not going to worry, So I just went to sleep and basically didn't worry, and then by the morning when my morphine had worn off a bit I did start to panic then actually. You know. I think it hit me then in the morning, that then actually I think something is wrong.

To be honest with you, that day, I didn't talk to anyone. I didn't go out of my room. I was just so upset. And I was so worried and I mean when I say that was the blackest day of my life it really was. You know, I've never had a day like that before.  I was just literally pacing my room. I didn't talk to anyone or speak to anyone or anything. 

 

Mother couldn't bear to acknowledge there was something wrong with her baby, father felt...

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Mother' Yeah, blocked her condition out rather than her, obviously. I was very very attached to my baby and having just gone through delivery you're very emotional anyway and you want everything to be healthy and happy and I was '

Father' Just denial really '

Mother' It's denial really that, yeah, I think it's, I just didn't want to know that there was something wrong with her, I just wanted somebody to tell me that she was going to be all, all better and that she was going to have the surgery tomorrow and when she came out that she'd be absolutely fine and healthy And that'll be the end of it. But they couldn't tell me that which is why I think I didn't ask any questions and they tried not to tell me too much because they '

Father'  Well they tried to tell you, and they then spoke to me and tried to get me to tell you in sort of a more informal way but I think its down to the individual anyway because you don't, you would have run a mile if one of the kids comes in with a cut finger never mind  surgery so. Some people, yeah, I view it quite logically and mechanically 'cos that's the way my mind works and I suppose men are less emotional on that side of it. So I could just see as, as something being repaired and at the end of it fixed and there she is and she's fixed.  So that '.

Mother' Mothers are a bit more emotional and it's, it's me that's, that's with her most of the time. And then just, I think it was, part of it was the unknown, we didn't really know what was going to happen.

Some felt angry that their child's defect had not been picked up earlier, particularly if the baby was suffering severe symptoms when the diagnosis was eventually made. A father describes his feelings of fear, disbelief and anger when his 3-month-old son was diagnosed with a ventricular septal defect.

 

Describes feelings of fear, disbelief and anger when his 3 month old son was diagnosed with a...

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We went there and we were there all day and towards the end of the day they said that they suspected a hole in the heart which is the VSD. 

Well that was quite frightening that evening, and then they said they would have to do an echo of the heart, they would have to listen to the heart. They would have to do an ECG and some other tests now which they did the following day. And they confirmed a large VSD is his heart. And they said he would have to stay in hospital for a bit so they could see what medicines he needs to take and stuff like that.  

That was quite frightening, at that time.  Well it still is now. We are from India, we come from India. We don't have any relatives or any family here. All our family is in India so there's just myself and my wife and our 2 children and it wasn't very easy to take something, we'd never heard of such a thing before. We had heard but we always thought this is something that happens to somebody else, it's not something that happens to us. A hole in the heart.

Can you describe to me some of the feelings you had?

Well the first emotion was that of, that of disbelief and actually it was just myself in the hospital with Vikram when he was diagnosed. She was home with [our other son]. It was just plain disbelief. I thought he was, I thought it was serious enough that I thought he'd go. [Pause] And then anger, then anger. Frustration in that we were going to the GPs so many times, we were telling them to look at him, we were telling him that he was sweating and we were telling him that he was not feeding. But they just couldn't do anything, I won't say they couldn't do anything. They just couldn't diagnose anything.

One mother whose concerns about her baby's symptoms had been ignored for five months felt relief that she was being taken seriously and finally her baby would be treated.

 

Describes feeling relief at diagnosis after 5 months of believing something was wrong with her...

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Age at interview: 12
Sex: Male
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And then he said you know, 'I think, I think that her heart is, she's in heart failure'. Which was something I could understand.  [Pause] And then it was just waiting while they sorted out where she was going to go and what was going to happen and my husband and I were sort of absolutely 'Oh, oh,' you know, this is 'What, where, why, what and how?'

And then we, then it was transferring to the other hospital in an ambulance and she, she had some sort of little, little sort of oxygen tent and it was so bizarre from going to, you know, that morning when I'm walking around carrying her, making toast and peanut butter for her sister, you know, sort of with your baby and sort of thinking 'Oh, you know, another load of nappies to do' to being, you know, with your baby sort of being given oxygen because there's something really, really wrong with her.  And it, it was bizarre, bizarre. I kept thinking 'This isn't really happening'.

Although in some ways, in some ways it was easier because, you know, God knows I didn't want to be proved right like that, but there was something the matter with my baby. [Pause] And you know it was, it, it, and it was sort of release and relief to think that. 
 

One baby who had not been diagnosed at birth needed emergency surgery at the time of diagnosis. His parents recalled being on 'auto-pilot' so that it wasn't until later when they got home that the enormity of what they had gone through had hit them.

A father recalled that he nearly passed out when they were told his son would need open heart surgery, which they had been hoping wouldn't be necessary. Some fathers hid their feelings and tried to be strong for their partner. Others focused on finding information to better understand their child's illness.

 

Describes his feelings when they were told his son would need open heart surgery which they had...

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Age at interview: 4
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Father' As we say, we were told, weren't we? the last, last January [Mother' January 11th] that he had to have this operation and I, I nearly passed out. I just sat in that chair and I was, my head was spinning, I went cold, sweat down my back and I virtually did, virtually passed out I was, I was that close. And all I could hear was everything going on in the background and [my wife] being upset and I was just in a different world. [Mother'  And the, and the....] I was sort of thinking 'Well I ought to be trying to help her and be pulling together but I couldn't... [Mother'  He couldn't no]  just out of it.

 
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Fathers may feel they need to hide their feelings and be strong for their partner.

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And in the initial days I think it's difficult for them because they sort of see their wife's just been through this major physical and emotional event of actually having a baby and they're trying to be strong for their wife and for this baby but actually they've got their own emotions as well. And even though they're not attached to the baby in the same way that a woman is, they still are because that's still their baby and they still have a lot of the same emotions. So I think it is very difficult for the men.  

 

 

 
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He kept his feelings to himself and didn't talk to anybody at first.

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I kept it close to myself and I didn't involve anybody else. I mean I didn't involve my wife. I just took it and it's wrong. And now looking back it was wrong because there was times when I felt that I could just sort of sit in a corner and cry my eyes out but I knew I couldn't. But I probably needed to which I did do eventually. And fortunately my wife was there to help me through it. And I think that's the big thing in all of this sort of thing, your relationship with your family. If you can find help within your family then you're half way there. 

There was times when I did get a bit emotional, didn't I? And, to be perfectly honest the two times that I did my brother was there and snapped me straight out of it. You said, 'Yeah, do what you've got to do, get it out of the way. But don't do it in front of my wife because she needs you'. 'She'll need you'. And when I look back on that it was sound advice.  

Sometimes the heart condition is not picked up until the child is much older. One mother describes the shock, anger and relief she felt when she was told her two and a half-year-old's diagnosis.

 

Describes feelings of 'why us', shock, anger and relief when her daughter was diagnosed with a...

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Age at interview: 5
Sex: Male
Age at diagnosis: 2
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I suppose initially, your first reaction is 'Why? Why us? Why my daughter?'. That, you know, I think that's a reaction that most people would have. You know, 'Why, why does it happen to us?' You know.  And then, I think, I think you have to get over that feeling and we went through many things, it was just, I, I think it was shock. I think we were in so much shock to start with and we couldn't stop crying. None of us could stop crying and I think we were trying to put on a brave face for the children my husband and I and trying not to show them too much. But it was just such an emotional time, you know, and it was, it was just so hard to do that.  

And I suppose you just went through various emotions of, of why hadn't it been picked up already?  Those were my initial things, the anger of it. You know, why, why was it not picked up when she was born? Those sorts of things. And then I think once those feelings subsided as sort of the weeks went on and I really started to, to thank God really that it had been picked up and that the doctor had seen it because it could have gone on undetected. So I did start to thank God and think 'Yeah, you know, you know she's going to be fine. She will go through surgery but at least it has been detected' you know. It could have gone on and she might not have been detected, you know.

Last reviewed July 2018.


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