Parents of children with congenital heart disease
How it affects parents
When they learned the diagnosis, parents felt shocked and devastated to discover that their child had congenital heart disease (see 'Parent's reactions'). During the following months, parents were on an emotional roller-coaster, with down days and good days and sometimes found it hard to cope.
Some mothers felt very low and depressed. One mother describes how different it had been to having a healthy baby. Another said she had difficulty coping and just wished the responsibility could be taken away from her. A couple of mothers said that at one stage, they couldn't face being left at home on their own with the baby.
Feels she missed out on the excitement she had felt after her first baby was born instead she was...
And I was very tearful and, for a long time when she came home and, and I even got to the stage where I didn't want you to go out, did I? I didn't want to be left on my own. For the, for a certain, not because I was frightened that something was going to happen to her but I just didn't want to be on my own. It was ever, ever so strange but I don't think, well it wasn't post-natal depression, I think it was just a bit down and a bit of delayed shock. But I think they should take care with some mums because it, you know, they could need the attention afterwards and it could get missed.
One mum for several months couldn't face seeing her friend who had a baby the same time as her. Another said she was on antidepressants for 2 years after her son was born. The National Childbirth Trust provides support for mothers with post-natal depression. Some fathers coped by trying to forget about their child's illness and spent more hours at work. One mother said her husband withdrew into himself for a long time.
The impact of having a baby who was ill, facing the possibility that he might die, or seeing him in a paediatric intensive care unit, didn't hit some parents until later. Some found it hard at first to accept that there was something wrong with their child. A few said they still hadn't come to terms with it.
As time went by, several felt that having passed through the emotional roller-coaster they were better able to accept and cope with their child's diagnosis. In some cases it wasn't until after their child had major surgery, and health had improved, that feelings of depression lifted. One mother said that she had been depressed for nearly 6 years, but when her son's health improved after his pacemaker operation she felt more positive.
Another recalled that after her son had his first SVT (supraventricular tachycardia) episode she felt better able to cope because until then the threat of an attack had always been looming over her. One mother said that two years after her son's diagnosis she felt that what her family had gone through had enriched their lives, and they were much stronger and happier.
Comments that her son's diagnosis has changed all their lives for the better and she is looking...
You know, and my parents are a lot happier and they're a lot closer to us now and I'm a lot closer to my sisters now and the kids have got a nice relationship with their dad that they're comfortable with and I was in a really bad marriage and it give me the strength to get out and we're friends now when we weren't before. You know a lot of things have changed and it's really good now and I'm really looking forward to the future now because I know Joe's going to be fine. I really do, I really do believe that Joe will be fine no matter what he ends up doing or no matter, where he is I just know he's going to be fine. And he's happy and that's all that matters to me as his mum. That he's happy. And really that's all that matters to me about anything is that we're all happy. And so, and we are, we're all happy and healthy at the moment. And I'm really looking forward to the future now. It looks much, much brighter than it was. I've gone from hell to at last being happy.
Having a child with congenital heart disease had had an impact on parent's decisions to have another child, their relationship as a couple and their daily life (see 'How it affects relationships' and 'How it affects daily life').
Some parents, who had hoped to have more children, felt apprehensive about having another child. They were worried that it might happen again and didn't think they could cope a second time. In fact the risk of having another child with congenital heart disease is relatively low. In some cases the disease has a genetic cause, and genetic counselling is available, but in most cases the cause is unknown.
A few parents had another child quite soon after their CHD baby and all were healthy. One mother explains that becoming pregnant again had helped her through the difficult first year after her daughter's diagnosis. One couple said they had been able to enjoy having a newborn baby, which had not been possible with their CHD baby because they had been so stressed and worried.
Getting pregnant again helped her through the first year after her daughter's diagnosis.
How has it been a help?
I suppose, how has it been a help, it's, it, the focus of our life cannot be the heart condition. We have a family. And I suppose it helped me through the first year of diagnosis, which I think is a difficult year. Because I had another baby to look forward to and I couldn't sit there depressed and thinking about it all the time. I just couldn't physically do it and especially when he was born. And he's another support. And he supports Alex, they're very, very close. And I know that when she has to have more treatment he's going to be a help. I don't know quite how it works but it does and I've known other people say to me that having another baby's helped. So, yes, we had one straightaway.
Mothers had a specialist scan during pregnancy and one couple had genetic counselling before trying for another child. Most mothers described feeling anxious during their subsequent pregnancy and wary after birth. Babies had had checks at the specialist hospital after birth.
Describes feelings during pregnancy of her second child and encourages other parents not to be...
And I was, it was a mixture of emotions. I was sad to begin with. I felt a bit guilty because I think Dan had that huge problem and this baby was going to be all right. But I still wasn't convinced even though the consultant had told me, I still wasn't convinced.
And when he was born obviously he was checked again thoroughly and was given the all clear. His heart was fine. We brought him home and I still wasn't convinced. And I kept watching for, to be going blue and I kept checking his nails and wasn't sure he was feeding right. And I took him back to the doctor's about 3 or 4 times to, to have his heart listened to 'cos I was that paranoid of him having something wrong with his heart. I think, having gone through all that with Daniel I couldn't believe that there was anything, nothing wrong with his heart. But I then eventually accepted the fact that his heart was fine. He was fine. And he was 100% healthy.
At the end of the day you have to live your life the way that you want to live your life and we want more children, so. It might sound selfish but at the end of the day the assurances that we had from the doctors and the nurses was that would be more unlikely than likely that we would have another heart baby.
And anyone who has a got a cardiac baby who's thinking of having another one I would say 'Go for it'. 'Don't limit yourself because you've got a cardiac baby. There's no reason for you not to have a normal child at all. I mean, it, it sort of makes things complete and a little bit better for you if, when you have a, a normal pregnancy, a normal baby. But, so I'd say 'Don't be put off having another baby'. I know, not everyone's like that but, try not to be put off by having another one because it does bring you a lot, a lot more joy [laughs], that's what I'd say.
One mother, whose baby died from congenital heart disease when he was four and a half months old said they waited a year and had genetic counselling, arranged through their GP, before they tried for another child. They needed a lot of reassurance during pregnancy and after birth. She describes her feelings during pregnancy and after birth.
Explains what it was like having another baby after her baby died from congenital heart disease.
Many parents felt that their outlook on life had changed. One mother said her priorities had changed, she was no longer as ambitious in her career and appreciated things a lot more. Another thought she had become more relaxed about minor illnesses having realised how resilient her baby was.
Explains that her priorities have changed and she appreciated things a lot more.
Comments that she has become more relaxed about minor illnesses after her baby's surgery because...
I think people expect me to be an over-protective mother and quite stressed out about it but actually I think it's made me the other way. I think I'm quite relaxed about it now. I think, well, you know, he's so, he's made of strong stuff. He's been through this, it's only a cold. And I'm not down the surgery with sort of every little cough and cold or sick he has. I just think children get these things, it's not worth stressing about it. And obviously I have to be careful that he doesn't get chest infections and I am, I will check him out if it persists but I'm not over-protective, I wouldn't say.
One couple mentioned that they had become stronger and had learned to be more assertive in fighting for everything their child was entitled to. A father said that he was now confident that his family could face any problem and cope. It had changed his perspective on life and he now had a more philosophical attitude. Another couple said they had become less sociable and enjoyed spending more time at home.
His attitude to life has become more philosophical and they now feel confident that they could...
Well I suppose I've certainly become stronger now. One thing this has taught us, one thing it has definitely taught us, one thing this has definitely shown us, I don't know whether it has taught us but we can do it. The two of us together, with [our older son] we can do it. If there really is a problem tomorrow of some kind, whatever, whatever it is, I think we can do it. I would not have been so sure of myself before this. But today I can say, with [my wife], and with [my older boy] I think we can do it. I think we can face up to quite a big challenge. It has also given me a very, a rather philosophical view to life really. Somehow, I was in the delivery rooms when [our older son] was born and when Vikram was born. What I saw there, the birth that itself, the whole process, the birth, a person being born, in a very real sense has made me feel very insignificant. I am not saying anything demeaning to myself, it's not like that, on the grander scale of things somehow I have become more philosophical in that all this is, I have a lot of words, but the splendour of it all, how small I am in all that.
And then this, we planned for so many things, we want so many things to happen to us, we try to do so many things. And one little hole in one little heart could really upset all of that. How insignificant am I in all this? I don't mean to put myself down when I say that but I am just looking, I am now beginning to see things in a much larger frame. I am now beginning to see a lot of things in a much larger frame now than I used to be able to do before. Earlier I was just looking at my house, my mortgage, my computer, my somehow today I am not attaching that importance to that mortgage any more as an example. Somehow I am thinking that there is something much bigger in all of this. That is how it has affected me. I think that is how it has affected her as well. She also repeats to me so many times now, she thinks that together we can do it.
Some parents wanted to 'give something back' and had become involved in raising money for heart research or for the specialist hospital. One father said that raising funds for charity had helped him to feel that he was doing something beneficial during the months when he felt unable to contribute to his daughter's care.
Taking part in a charity run helped him to feel he was doing something beneficial when he felt he...
Last reviewed July 2018.
Last updated April 2010.