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…

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I mean the only other thing that I, I feel that maybe sort of mums should have a bit more time with is that I was really worried before I had her that I was going to get post-natal depression and don’t ask me why, I just, I got paranoid about it, didn’t I? Because I thought with, with everything that was going to happen, we knew about everything, you know, about all the surgery and how long shed be in hospital, all this lot, and I just thought, ‘ it’s going to have some effect, it’s bound to. I mean. I got so paranoid after that I’d convinced myself I’d, I’d probably got it but nobody seemed to think about me, do you know what I mean? That seemed to all be forgotten when you’ve had a baby, because you’re in hospital, in a children’s hospital, it’s as though you haven’t given birth and you lose out on all that, do you know what I mean? ‘Cos, like with my son it was like, you know, you get pampered and everything like that and it was lovely. And it’s all this sort of bubbly time and that and I had none of that when I had my daughter. It was, all seemed to be forgotten, wasn’t it really?

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.

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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…

Age at interview 2

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I’ve already said to you I went to hell and back with my heart baby. And anybody who’s watching this who’s got a heart baby will know exactly what I’m on about but I will say that it has changed my life so much for the better, I just can’t begin to tell you. It really has. I mean it’s changed my other little boy’s life so much for the better and Joe is just fantastic. Hes just a snotty, dirty, horrible two year old who hasn’t got a clue in the world that hes got problems. Hes just happy and he just doesn’t give a monkey’s about anything. You know. And now we just, we live life to the full, we really do and we don’t look back now. Weve got problems and we have to deal with them but that’s OK.

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 were 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 Joes 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 hes going to be fine. And hes happy and that’s all that matters to me as his mum. That hes happy. And really that’s all that matters to me about anything is that were all happy. And so, and we are, were 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.

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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.

Age at interview 3

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So anyway we had another baby and that was a huge lift. That was, we had to take him for checks. We had a specialist scan when he was 20 weeks in the womb. We were told that they’d seen the heart and it was fine. They also sent him up to the specialist hospital a few weeks old but we knew there was nothing wrong with him because weve seen a heart child, we could, we could see that he, he wasn’t a heart child, funnily enough. He was over 9lbs at birth and he was a really big baby that fed all the time so we didn’t find it worrying. In fact it’s been a huge help psychologically to have another one.

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 hes another support. And he supports Alex, they’re very, very close. And I know that when she has to have more treatment hes 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.

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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…

Age at interview 3

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But I did feel I wanted another baby and Dan, Daniel was only 10, just 10 months. Hed had his first stage Fontan and I found out that I was pregnant. And I wasn’t shocked. I was absolutely, I was delighted. I was absolutely over the moon. [my husband] couldn’t speak for about a week. But at the same time we were anxious and frightened that obviously the same thing might happen. And we had a series of scans to make sure that this new baby didn’t have any defect at all. And when the day came for us to have a big scan, it was like I was holding my breath. Until they actually told me that this baby was, had no cardiac defect. It was like holding my breath. And we went and it took about an hour and the consultant finally said that the baby’s heart was 100%, had all four chambers. He couldn’t see any problems.

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. Theres 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 everyones 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.

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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.

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So after we were reassured that it wasn’t you know it wasn’t a high risk of it happening again we decided to try for another baby and wed been told that it could take up to a year to get pregnant again and I got pregnant straightaway. So it was just under 2 years after Noah was born that we had our second child and it was very, very worrying during the pregnancy. I just wanted it to be over really, I was quite stressed. And the labour was difficult because I was worried that something would go wrong. And the first 2 weeks after Alfie was born I couldn’t leave him, I thought that something was going to happen to him. It was quite irrational really, I thought someone was going to drop him or he would suffocate or he would choke or, you know, just. I didn’t believe that he was here to stay and it took 3 or 4 weeks of spending time with him before I knew that he was okay. That was difficult; I wasn’t really prepared for that, to feel that anxious and I don’t think, I don’t think my Mum or anybody really knew how to help with that because there wasn’t anything they could do, it was just a matter of time really.

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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.

Age at interview 3

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My outlook on life has totally changed, yes. Very difficult to describe how. I say I, my husband and lots of his friends, the year after Alex was treated, raised over ‘3500 for the hospital. And they did a big challenge and it was publicised and I can’t imagine us doing that before. I appreciate things, appreciate much more than I’m sure I would have done. It’s difficult because it clashes with the first time I was a mother as well and I think well, being a mother does change you but I’m sure that this experience has definitely changed me. I’m a lot more grateful for things and I just want a normal life. Where as, maybe before I would have wanted something extra. I just want a normal life now. You know, two happy children who are my priority in everything and my career definitely has, I was, I was offered a promotion when I went back after Alex was born and I turned it down and I don’t know if I would have taken it if she hadn’t of been ill. But it was something I’d worked for, for years and I had to turn it down. But I have no regrets about doing it but it’s just a, difference that I think that the experience has made.

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Comments that she has become more relaxed about minor illnesses after her baby’s surgery because…

Age at interview 1

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I mean he still is a very good baby, he does sleep through the night, and he is just very, very good and I am spoilt with him in that respect and people go, you know, I’ve had other people say to me ‘Gosh I just want to talk to somebody who’s had a nightmare first year’ and I have had a nightmare first year but from a completely different perspective and much more life threatening and I don’t know if that’s made me more relaxed;

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, hes so, hes made of strong stuff. Hes 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;

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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…

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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.

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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…

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And, it’s difficult to explain but I’ve felt as though I’ve needed to put something back and that’s probably why we decided I’d do a charity run and try and raise as much money as possible for, for heart research. I mean, just so, well basically it benefited my daughter but other children who are gonna be coming along it may be a year, 10 years, whatever. And hopefully give them a, a better life and hopefully, just, just to feel I’ve achieved something by putting something back and I think, I’ll be ongoing in doing that, I will. I won’t stop. I will try and, and do a lot more and that, you know, put a lot of money in that way. Because I know it, it may or may not benefit my daughter but I know it will benefit people who come after and that helps me. Because it feels as though I am now doing something. All, all them months that I never, I couldn’t do nothing when I couldn’t help my daughter when she was lying there with tubes and, and, yeah, I mean, I don’t know how it feels for sort of the, the mums but a dad, the way, I mean, I could, I can’t sort of pick her up and tell her everythings going to be OK. And, I did find it difficult and by doing this, I feel as though I’m putting something back and I think, I think that’s helped me get, grasp a lot of things.

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A child’s development

Some children with congenital heart disease, in and out of hospital for their first few years of life for various operations, may have development problems....

How it affects relationships

Discovering that your unborn baby or child has a congenital heart defect can put great pressure on the relationship between parents. Some couples become closer,...