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Parents of children with congenital heart disease

Messages to other parents

We asked the parents we interviewed what advice they would give to parents who had learned that their child or unborn baby had a congenital heart defect.

Here is what they said:

  • If your child has just been diagnosed with a congenital heart defect, try to be positive even though it may seem like the end of the world.
  • Babies and children are much more resilient than you would expect.
 

Explains that babies and children are very resilient and often cope better than parents do.

Explains that babies and children are very resilient and often cope better than parents do.

Age at interview: 3
Sex: Male
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It may seem like the end of the world but it's not, you know. You, you do, you can get through it and it's surprising that how, how the, how the children bounce back. I think they, they do bounce back a lot quicker than actual adults do, you know. It's amazing how they, the children cope with it. You think they're, they're so young and fragile that they obviously, you know, they won't be able to do it but it's amazing how they do. They, they seem to cope a lot better than us the parents do with it.

  • There are many successful treatments available nowadays for children with heart conditions.
 

Encourages others to have hope in the many successful treatments available nowadays for children...

Encourages others to have hope in the many successful treatments available nowadays for children...

Age at interview: 5
Sex: Male
Age at diagnosis: 2
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Yeah, finding out is, your life, you, you feel like life has ended when you find out initially. Especially for us we'd had had two years of [my daughters] life not knowing that she was ill. It, it's not going to be easy for any parents but I think maybe when it's diagnosed in pregnancy and things like that you're, you're coming to terms with it before the baby's born and things. Whatever time it is it is going to be, you know, heartbreaking for any parent but I think you have to think that the, the surgeons and things that are, that that are in the hospitals and things these days, you know, they just, the professionalism is just amazing, the technology and things that there are today that you now children, children survive, children survive. Whether, not all children need surgery but there's specialist treatment out there.
  • It may mean being on an emotional roller-coaster, over several years in some cases, but in most cases there is light at the end of the tunnel.
  • Even when there is a possibility that your baby may not survive it is important to stay positive and have hope.
 

Encourages other parents to be positive and have hope if they discover their child has a heart...

Encourages other parents to be positive and have hope if they discover their child has a heart...

Age at interview: 3
Sex: Male
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Mother' Take each day as it comes and babies are a lot stronger than what you think. And it's something that you have to accept because it's never going to go away and obviously throughout life they're not going to be like every other child because obviously with the cardiac condition there is, you know, certain negatives, the breathing, and the standing and tiredness and things like that. But they are, they're a baby and they're a child at the end of the day and they do everything as normal babies and children do. 

Father' So, newborns now, it's, it's not to give up hope, it's, it's just started. It's traumatic, it's every emotion that you could possibly go through but if you, if you're strong and stay united, yeah, you'll get through it and there are going to be down sides to, to life like there generally is but if you're strong and you have faith then you'll get through it. 

Mother' We never, we never thought that we'd get Daniel to three. Ever. From what we were told in the very, very beginning to even contemplate an hour with Daniel was hard. But each step, each step that you take is a positive step. And it's, each step that you take is a, is a more hopeful step. 

  • It may not be as bad as you fear, your consultant may have given you the worst case scenario.

Finding out during pregnancy
  • Try to accept the diagnosis, visit the hospital and find out as much as possible about what to expect before the baby is born.
  • Though it is difficult knowing during pregnancy it does mean that the best support is available as soon as the baby is born.

Information & Support

  • Find out as much about your child's illness as you need; if you don't feel comfortable doing this, see if someone else will do it for you.
  • Never be afraid of asking doctors what you think might be a silly question. Ask for information to be explained if you haven't quite understood it.
 

Gives advice about getting the information you need from health professionals.

Gives advice about getting the information you need from health professionals.

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Mother'' I think that what I'd say is try and get as much information as possible. Don't be afraid to ask simple questions. Try and make a list of all the questions you want to ask, don't be afraid to go back. Even kind of being familiar with the NHS I felt quite intimidated when I was in that situation, very vulnerable, I felt as though I lost all my assertiveness and things that I had in my head that I wanted to ask and so I didn't you know end up asking. And its there for you, you know all the professionals are there to support you and just keep asking for things, just keep asking the questions. 

Father' And ask quite direct questions, because I mean we found they tended to sort of skirt around the issue of his life, life expectancy. You know we sort of approached it in three or four ways and in the end I just got fed up and said 'How long do you think he'll live? What age do you think he'll live to?' And that's when we got a straight answer. So yeah you know just ask direct questions if you have to you know be quite blunt. Its important that you know everything in terms of decisions that you make. 

 

Advises parents to be well informed and to take an active part in their child's care.

Advises parents to be well informed and to take an active part in their child's care.

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It is a very frightening thing, this, on the outside. It is definitely very frightening. I don't suppose there would be a parent who would not be overwhelmed by the magnitude of all this. It is very frightening. But technology is advanced, technology is quite far advanced. Just go with the doctors, the doctors know best. There is nobody else who can know better than the doctor. Be very well informed, be very well informed. Read, read, get information there is Internet which has got loads of information. If you don't have access to that information there is so much information available in the libraries. But get information, read, ask questions. And just go for it, just do it. If you are faced with the operation itself, don't unnecessarily postpone it. Do it, get it done. And technology is so far advanced today that they are able to make corrective, or rather they are able to take corrective steps even if they don't actually operate they will insert tubes, they are able to do all these things. They are able to actually replace valves or maybe even correct valves, I don't know what they are able to do but without actually operating on the heart. So trust the doctors, go. But be informed, I mean, you have to play a very active part in all these things. It is not that you can just say 'okay doctor I have a sick child, can you correct it?' No, play a very active part and just go for it. Everything will be fine.
  • Write information down during consultations. 
  • Taking a first aid course may give you confidence when caring for your child at home.
  • Don't try to cope alone. Make use of the help and advice available from health professionals, support organisations and from other parents.
 

Advises parents to talk to health professionals and other parents about the support that is...

Advises parents to talk to health professionals and other parents about the support that is...

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Father' And I think at, there's an awful lot that you can do for yourselves in respect that you can, you know, you can sit and talk and help each other through things.  But at the end of the day it's people who, who are qualified.  

Mother' Hmmm 

Father' And if you need more than just your partner, I think, you know, anybody whether it be your liaison sister, the cardiac liaison sister or a nurse, even a doctor, or the cardiologist themselves, they'll all take time. If there's anything you need explaining then they'll take time to do it. They will. If they, I mean if we ever had a problem we made it clear and that, they will tell you to do that as well. Make it clear that if you're not happy with something let us know so that we can do something about it. And they are, they are very good at, at sort of leading you up the right path, if you know what I mean. I mean, there's, there's a lot of things that you, after it, like, like the DLA and forms and things that, that you could be, they could help whether it be financially or, or just, you know, help you with the development of your child. That you should, that, you know, a lot of people don't know about. I mean, we didn't know about 'em, its' just that we've been fortunate enough that we spoke to other parents who have told us. 

 

Describes the benefits of talking to other parents.

Describes the benefits of talking to other parents.

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And I mentioned earlier on the idea of meeting or talking to parents who've been through what you've been through but have come out the other side, I think's really, really important because then they can give you some sort of hope that it is, you know, it, it got better for them. They can't tell you anything about whether it's going to work for you or not because nobody can but they can tell you that for them it, they had some real ups and downs, the same as you're going through. But they did get out and they did get home. And I mean there are plenty of times for us that we thought, you know, 'Are we ever going to get out of here? Are we ever going to get to take him home or not?' And so to, to talk to people who'd been in that intensive care environment and had the serious, you know, the real, major surgery so soon it sort of, it did help. 

  • Find time to talk to your partner and to make time for each other as a couple, especially if you are a mum preoccupied day and night with your ill child.
 

Advises parents to talk to each other about their feelings and to make time for each other.

Advises parents to talk to each other about their feelings and to make time for each other.

Age at interview: 5
Sex: Male
Age at diagnosis: 2
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So, really the point for other parents it is important that you do talk it  through, talk about your feelings, cry together, share the experiences together. I think it's sometimes difficult as well, you know, it's a motherly instinct as well that you know especially after the surgery [our daughter] had, she was the most important thing to me and I spent at the hospital and things I spent all my hours with her, all my time with her. We came out of hospital, you know, you know, we were at home together so a lot of my time was taken up by [our daughter] and I suppose my husband did feel neglected. So, it is important for people  for couples really to try and sort of make time for each other  and just to discuss how they're feeling and just to share with each other. I really learned that  and I know, I know it's been a hard learning experience for me, you know, my marriage ending  but I think it's, it is because we didn't share our feelings enough with each other, you know. 

 

 

Coping as a parent

  • Parents need to be strong advocates for their child, making sure that they are getting the best possible advice about the best possible care.
  • Parents should trust their own instincts when they think something is wrong with their child and when they are not happy with the medical advice they are being given.
 

Advises parents to trust their own instincts if they have concerns about their child's health and...

Advises parents to trust their own instincts if they have concerns about their child's health and...

Age at interview: 4
Sex: Male
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The only, only other thing that I would say that I have learned from this is to trust my own instincts and that's what I feel as if I've, I've done all along, that when he was, when he was poorly, I did feel as though, I allowed myself to be fobbed off a bit then and I wasn't happy. But then I have learned now to trust my own instincts and if I'm not happy about anything, I am not going to sit and worry about it, I am going to take him down and people can laugh, can laugh at me as much as they like or think, here's that neurotic mum coming. But my son cannot speak for himself, he can't get things sorted out, I have to do it and there's been times when I've thought, gosh, if I was doing this for myself I wouldn't be this forceful, this forceful about things, I would just accept things. But because I'm doing it for him, then I never ever want to be in a position, whereby, I'm thinking, if only I'd been and asked that question. If only I'd done that.

 

  • You can feel very helpless when your baby is being looked after in hospital. You can feel more in control if you are providing breast milk to be fed through his naso-gastric tube. If you can understand what is being done for your child, and why, you can make sure it is done properly.
 

Suggests focusing on one positive aspect.

Suggests focusing on one positive aspect.

Age at interview: 2
Sex: Male
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And I think that the way I coped with it is to just find one thing that is really positive, for me it was breast-feeding. Just find one really positive thing and just focus on it. Then really, really try and focus on that. I really tried to focus on Joe's feeding and when he was in hospital the way I tried to keep Joe my baby, and to keep in control was to insist that he was fed breast milk through his nasal tube. And to insist that I was allowed to express, just so I could keep a grip on it basically. To allow him to be my child. It might be that you know your child isn't going to come off the nasal-gastric tube, but just find one way of being positive. And focus on that one way. It might be something really simple. But you will find that'll help.

 

Suggests taking an active part in your child's care while in hospital.

Suggests taking an active part in your child's care while in hospital.

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I think one of the things that I found really helpful while I was in the hospital was, because you feel so helpless sometimes as a parent and you don't know what to do, well I kept a diary. And I tried to keep track of the medicine that he was on and the food, the different kind of feeds that they were trying to give him to encourage him to feed. And I tried to become quite involved so I knew what was going on and I learnt to know what was happening to him. Because as him Mum I couldn't do the normal things you can do for your baby so I tried to do the other things that I could do. I don't know whether that helped or not, I think it might have really annoyed the nurses sometimes because I asked them lots of questions. I think you have to keep asking questions and you have to question why things are being done and does your child really need another x-ray? And is it that important to wake them up to bath him or can you not just leave him because they have been through a lot? All these things, I think it is important to remember and remind people that you are still that child's Mum or Dad.  And to try and give the baby or child as much normality as is possible if you are living in a hospital ward. I think that is what I would say to parents going through similar things.

  • Don't underestimate the impact on your life and the level of organisation needed when you are trying to keep your family life as normal as possible for your other children, whether your child is in hospital or at home.
  • New mums must not forget to look after themselves. This can easily be forgotten when your newborn baby is ill.
  • Enjoy your child 
  • Don't let his illness stop you enjoying your baby, try not to be overprotective or treat him as disabled.
 

Advises other parents to relax and enjoy their new born baby when they finally get them home.

Advises other parents to relax and enjoy their new born baby when they finally get them home.

Age at interview: 3
Sex: Male
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Because bringing a brand new baby home anyway is traumatic but coupled with an illness, it's heightened. But that's what I'd say, relax, try and relax, don't be tense and enjoy those moments because you don't get them back. That's what we found with [my younger son], you see we were lucky enough to have another baby who was absolutely normal, fine so of course we had all that back with [my younger son] in the beginning. And with having [my son] I saw how much I missed out with Dan by not relaxing, by not enjoying him, by not taking him to Asda to show off my gorgeous boy. Relax and be normal, that's my biggest piece of advice, relax and be normal. As hard as it may seem after you've been through such trauma, because it is a trauma, you've finally got them home, which is your biggest wish, just relax and enjoy, definitely.

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 Last reviewed July 2018.

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