Finding information about congenital heart disease

There are many types of congenital heart defect. Information on outcomes or quality of life are sometimes uncertain and the medical terminology used is complex. It can be difficult for parents to make sense of information they are given when their child is diagnosed with a congenital heart defect. Here parents we interviewed talk about their information needs, where they found information and its usefulness.

Many parents found it hard to digest a lot of information at the time of diagnosis but later they wanted the opportunity to ask questions and get information. One mother who had the opportunity to do this said it had been helpful. A few who were medically trained said that having this knowledge at diagnosis had helped.

They found it hard taking on board information when they were told their son’s diagnosis but when…

Age at interview 3

Gender Male

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Father;But at the initial stage. The first, I mean, you feel, you know, a lot of the things just go over you’re head to be quite honest [Mother;Hmmm] because your heart’s beating yourself, your own heart is thumping wondering what the doctor going to say to you, you know and you don’t take half of it on board. You know when we came away we were saying, did he say [Mother;Hmmm] what did he say again;

Mother;I suppose it’s a good thing to have two of you at least because what one person has missed, the other one will perhaps pick or if you interpret it a slightly different way. They might say no I don’t think he meant that, he meant this but and you, you go away but you haven’t got anyone to phone up and clarify things or anything like that. So like [my husband] says they are too busy but just get given this diagnosis or whatever and then you know, left ’til your next appointment.

Father;And it’s that space between the two appointments you know, all the questions are there but you haven’t got any answers and that’s really difficult. You know, when you know you’ve got to wait another maybe a month or two weeks, however long even if it was only a week, you know, when you need this question answered and you need it answered today. It’s very difficult to wait that time you know, so I think don’t be scared to write things down. It is, you do feel a bit silly but given, given it over again I would have taken notes. You know, the terminology that the GP or the specialist was using, I would have written down.

Mother;I think at one point we did in between appointments, write a list of questions and then I didn’t ask them. You know, you just, you’ve waited half hour or an hour for your appointment and you know, we were there with like a three month, four month old baby, who was hungry or was fretful, or whatever and so we didn’t.

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Some treatments in paediatric cardiac care are relatively new and information about survival or outcomes is minimal or not clear cut. Parents whose child had a particularly rare condition had found it frustrating that they could not get definite answers to their questions.

Comments that it was frustrating in the beginning not getting clear cut answers to her questions.

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I don’t think they can I think sometimes they sort of say to, you know, you want to know what’s going to happen in 5 years; you want to know what’s going to happen next week; you want to know if hes going to have an attack; you want to know what the, you know, you want to know things that they can’t tell you at the time. Especially when they’re newborn. I think newborn babies, you know, it’s an unknown quantity so they can tell, you know, this happens, that happens, but I think the hospital that I was at had only had one other child there with Wolff-Parkinson-White that had been three years before, so nobody, like none of the midwives that were, were with me had actually been there, been there and only in hindsight do I, do I realise that they can’t answer everything. You know, at the time it was frustrating that and, the little questions that I had you know, they were like ‘Well it could be this, it could be that. You know, ‘You can do this, you can do that. It’s up to you.

And I felt that that was very pass the buck, wishy-washy but now realise that, you know, there wasn’t the answers then. You know, they can’t, they, they haven’t got a crystal ball, they cannot tell you. They can tell you facts and figures and you don’t always want to hear them facts and figures at the time. You just want to be told it’s all right. And they can’t say that. So you know, at the time it was, it was frustrating although looking back now I can see that they did their best, you know.

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Some people used the internet to search for information, others relied on information from the hospital. One couple explain how they managed their different needs for information. Some parents wanted to have as much information as possible; others wanted information in stages. A few wanted only basic information about their child’s diagnosis; one couple explain that they chose to spend time with their child rather than ‘pouring over books’ for extra information.

They didn’t want too much information and chose instead to focus on spending time with their son.

Age at interview 1

Gender Male

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Mother;Mainly from the hospital where he had the operation. I have to say, I mean, none of us, I mean, when I was pregnant, we didn’t do a huge amount of reading, did we; We didn’t sort of, just in terms of having a baby. In terms of Joshua’s heart condition, we, we I can’t remember, did we. I mean, they, at the hospital, they were very clear actually about they told us exactly what it was. I mean when I said I didn’t get a huge amount of information that was at a different hospital where this kind of thing isn’t their you know, they don’t specialise in that area. So once the diagnosis was made, they were very good, you know, and the consultants talked through everything with us at all stages, and we were quite clear in our heads what it was that was the problem. So I would say most of the information came from the hospital itself. From the consultants, I mean, I guess if you want to read up on these things the information is there but I have to say I didn’t read, I mean, it was very hard because I was also coming to terms with the fact that I was a mum and you know that’s a full time job, so just reading anyway was not, you know, was not, it didn’t come in to the equation for me. I mean, I think [my husband] probably had a bit more time, you know, on the tube, going to and from work and things, but…

Father…I mean, it was Christmas when, yeah, Josh was born in November, and it was Christmas, a month later and the last thing, you know, I try and remember when we actually knew, knew we were actually going to have an operation….

Mother…it was before Christmas, we knew, yes…

Father…and I think the last thing we wanted to do was actually sort of go well you know. I mean we did, we went through a number of things, we actually had, we actually arranged for Josh to be christened before the operation only because, you know, not, not because were overly sort of like religious. I think it was, it was just a nice way of getting the family together to spend some time with Josh. Because we didn’t know what the outcome was gonna be. You know in, in any operation, there is always going to be sort of kind of like a, you know, a happy ending and a sad one. Possibly theres always that element and we just wanted to make the most of the time we got with Josh. And the last thing we wanted to be doing was pouring over books. I mean, we, you know we can’t, at the end of the day we can’t, we couldn’t change anything;

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Describes the different sources of information they used and their usefulness.

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Father’The Wessex Heartbeat web site, that I looked at. The British Heart Foundation web site, gave me a lot of layman’s terms because I had no, no understanding of what a coarctation was, or VSD or..

Mother’Well you did ‘cos they were explained to you.

Father’Well I had it explained to me but I still didn’t understand, you know, truly what it was.

Mother’I remember that you came back into hospital though and you said, I think hed come home one night after the first op[Father’Hmm] and hes obviously been on the web sites, which was on the back of a pamphlet we were given, [Father’Hmm] and I think that you’d got into bit of a panic about it.

Father’I’d, I’d scared myself because it gave me worse case scenario of everything and we were lucky that Millie wasn’t worst case scenario of it.

Mother’But you don’t know that when you’re looking on a web site, do you?

Father’No, and you know, before this had happened to us, I never even thought about looking into anything like this. But I will say British Heart Foundation web site gave me, I think they’ve got a list of all the terminology that’s used on there. And I did find that very, very useful because I printed it off thinking, right, well now when I hear about it, when someone says it, I can actually have a quick look and…

Mother’But you see, I was in hospital, so I didn’t look at any of that. I looked at what they’d given us and what they had given us was, you know very.

Father’It was very informative.

Mother’Very informative and complete and anything that wasn’t in there they were happy to explain but it all was in there and they’d done our own diagrams, hadn’t they? We had sheets about the medicines and what they did and we had their little diagrams that they drew, [Father’Hmm] during that, drawn that night and..

Father’And more even to the point where I, I’d asked a couple of questions and didn’t understand the, you know, a couple of the answers to the point, where the cardiac surgeon went off and actually got a…

Mother’Oh yeah.

Father’A heart.

Mother’A heart, a plastic heart

Father’A heart diagram, a plastic heart. And sat me down and said, look this is this bit, this is this bit, you know, [Mother’Yeah] and he said to me, I can leave this with you for a bit if you want and have a look at it. But I found that really useful because you know, I couldn’t even before hand had even pictured what a heart looked like.

Mother’I think one of the talents of a paediatric doctor, wh

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Explain their different information needs and how they managed to both get the information they…

Age at interview 5

Gender Male

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Father;Because I wanted to know. I mean I wanted to know everything but I know my wife didn’t. As long as knew I would be quite happy and now, I mean, it’s like we watched a programme on television one night and it was about a child with the same illness as what our child’s got and we saw the operation and the outcome and that and I watched it and I thought ‘That’s absolutely amazing. But then my wife watched it and she broke down, yeah?

Mother;I had, I had to go away to a different room and watch something else after about 15 minutes. [Father;Yeah] I’ll cope with that when I need to cope with it but I don’t want to watch it on the TV.

Father;And like that, I’ve said that to all the doctors ‘Tell me up front, tell me everything. I want to know everything. Don’t keep, hide anything at all. If my wife doesn’t want to know, I want to know. I mean, weve done that quite a few times, yeah?

Mother;Well, most of the time I’ll stay there and I’ll listen to it but if I don’t want to listen to it, it’s not that I don’t’ want to know, I would ask him later when I’m ready to hear it.

Father;Yeah, I could tell you…

Mother;You know, a gentler way.

Father;A milder way, yeah.

Mother;If you like. But that’s, that’s how we go on with it, basically.

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Many parents said that they were given plenty of useful information by the cardiac care team (see Interview 22). Several had been given detailed explanations, lots of time to ask questions, and information had been repeated if they didn’t understand. Some cardiac surgeons had used a plastic heart to explain the workings of the heart to parents; others had drawn diagrams. One couple felt they couldn’t ask the doctors all the questions they needed answers to because they were so busy. Most parents were concerned to find out what day-to-day life was going to be like for their child.

They found that doctors provided a clinical picture but it was other parents who could offer information on what day to day life would be like.

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Mother’Yes I mean I think there was sort of two stages really, the first stage was when I was diagnosed with having a, a child that was going to have a heart condition and at that stage, we weren’t actually given any information about web sites and all the rest of it. Then once wed decided that yes we were going to have the child because I had the amniocentesis and the amniocentesis, you know said that everything else was fine, he didn’t have any other chromosomal disorders or anything.

We decided to have the child and it was only at that stage that we then went hunting for information. And, and it was sort of hunting, I think the most helpful people at that stage were probably the Children’s Heart Federation who were able to send us quite kind of clear statistics and put us in touch with other parents and the cardiac liaison nurse as well you know gave telephone numbers of other parents.

And the most useful information actually was from other parents because I think that what we got was, this is the clinical picture and this is the percentage of kind of survival from an operation or whatever, and it wasn’t a whole picture of that person. It wasn’t anything about the reality of actually this child is going to have a disability, theres going to be quite severe limitations to sort of day-to-day life etc., etc.

And it was only really through talking to other parents and the experiences that they had been through that we realised that it was going to be every day, that actually some children with the condition that [our son] was diagnosed with when he was in the womb he might end up in a wheelchairs, they might end up being so breathless that they can’t even walk from out of the door to the bottom of the garden without being completely exhausted, or up the stairs.

And it was that, that sort of information you know that we really kind of, would have really helped at that stage to have made the decision rather than a kind of really clinical.

Father’Clinical yeah sort of the operation, the standard operation and generally everything will be fine, but it was always from a clinical point of view you know.

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Parents said they found the booklets they received from the hospital helpful. One couple had found the information on medication useful to refer to when they were caring for their baby at home. Another mother had been shown a video on pacemakers, which she had found very helpful.

Booklets and newsletters provided by national support organisations had also helped (see ‘Resources and Information’ section). Many said that the book produced by HeartLine had been very comprehensive and extremely useful. Another couple recommended getting the booklet from the British Heart Foundation, which they said had helped them to understand their son’s heart condition.

She finds the Heart Link Newsletter helpful in providing information and support.

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It is but were also getting more information from sort of voluntary organisations and support groups you know I guess, I guess as hes got older weve got involved with them a lot more. You know and that’s, that’s been quite a good source of information really. I mean I think that in particular you know getting the Heart Link Newsletter has been great from Heart Line you know that kind of real stories and experiences that people are going through. And to read something and for somebody else to say ‘Actually yes you know my, my child also picks up everything under the sun and seems to have a cold every two weeks that then turns into a chest infection and you’ve got another set of antibiotics. Just kind of makes you feel gosh yes this is normal and it’s not just me.

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Some parents found it hard to get information. One couple recalled that it was difficult finding information about their daughter’s complex heart condition because she had a number of heart defects. Parents of children with rarer heart defects had also found it hard to get information on their child’s condition.

Explains the difficulty finding relevant information about their daughter’s complex heart condition.

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I mean weve become members of Young at Heart. Which is like an organisation for this area, but weve found that with our daughter’s problems theres a similar problem but on the opposite side, Left Heart Matters and I thought that’s a support group for that particular problem, but when I asked them at the hospital what my daughter’s condition – they couldn’t give me one because shed got quite a few, so it wasn’t sort of shes got this and it’s called this, and theres this help here and you know this booklet here, it was never like that. And then when we asked for a booklet, it was, they gave us about 4 or 5, and that was hard. But apparently now the group that we asked about before they do actually cover my daughter’s problem so that will be helpful. Weve been in touch with them.

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Several parents had used the internet. The British Heart Foundation website has a list of terminology used, which helped one father (see Interview 22). One mother, who was also a doctor, had found pictures and information to explain their daughter’s condition to her family and friends. Another couple pointed out that although some of the American websites discussed different treatments, they had found extra information on them useful. Some had found that the information on the internet was too technical, presented the worst case scenario, or was too distressing.

Most parents who had read books from the library said they had found the information too clinical, and the terminology complicated and unhelpful. A few had gained useful information from newspaper articles or television programmes. One mother explains that by reading about valve replacements in a newspaper article she had discovered the Children’s Heart Federation, which had been a good source of information.

She found information from a newspaper article through which she also discovered the Children’s…

Age at interview 3

Gender Male

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Actually just by chance I read an article in the Daily Mail a few weeks ago, months ago now, and it was about a child that had had a new type of valve in. Now valves are something that I’m interested in because Alex might need one and so it, it did say at the bottom phone the Heart, Children’s Heart Federation. Now I didn’t know that they existed which I don’t know why. Maybe I’m not looking very well. And when I phoned them up they were brilliant and they sent me information and let me know a lot more than, than I didn’t know. And Alex is three, so for 3 years I didn’t know that information was there. So it was just by chance that I actually found out. And since then I’ve, I’ve noticed the Children’s Heart Foundation, Federation, posters and things. So maybe they weren’t up before, I don’t know.

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A few parents had sought a second opinion on the best hospital for their child or on their child’s diagnosis. One father explains why he decided against getting a second opinion.

They sought a second opinion so that they could decide which hospital to have their son treated at.

Age at interview 3

Gender Male

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Mother’It has but when he was initially diagnosed that was at the local hospital. but because he was diagnosed antenatally we asked our GP whether we could actually have a second opinion at another hospital outside of our area. He did a referral for us so we did actually go to another hospital and we did seek a second opinion. So we actually had the choice whether to have Felix treated in the city that we live in or outside of the city and we elected to have him treated locally. and, so from that point of view although it was a huge shock having him diagnosed we felt that [um] it was to our advantage in that we made an informed choice about his treatment. And if it hadn’t been diagnosed until after hed been born then wed have been in the position where we wouldn’t have had time to do that. And I think that stood us in good stead really.

I phoned all the, the numbers that are in the telephone directory relating to, British Heart Foundation I think was the first one and then they put me in touch with I think it was Heartline and Left Heart Matters as well, in [city]. Which at that time dealt specifically with children with Hypoplastic Left Heart and they have them, well they have their own newsletter – don’t they? – but they actually have a booklet that they will issue to parents that have got children with cardiac problems and that had all sorts of information in. So, so we looked, we did look at that but we didn’t, we didn’t look at any other hospitals, did we?

Father’No I think that time was the essence and it was running out really. and we had to make a quick, a quickish decision. and with having two other children I mean who were still at school we had to make that decision quickly to say where are we going to go.

Mother’The other thing is as well that at the time we would have chosen to have him treated wherever we thought he was going to receive the best treatment and as it was we chose our, our hometown. But if wed have thought hed got better treatment elsewhere we would have gone elsewhere but I don’t think we actually realised that at the time that if wed have chosen to have him treated away from home the impact that that would have had on our home life because for 10 months we were in and out of hospital all the time and it did cause disruption.

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Explains why he decided not to seek a second opinion.

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On the one side, our doctor was telling us that although he was specialist he was, he was a child heart specialist, he was telling us that the operation had to happen. But we also read and see on television so many doctors making the wrong diagnosis or something like that. While we didn’t in the least suspect or rather doubt the capability of this doctor, he is very well qualified, but again a second opinion we thought would be useful. But we didn’t quite know how to go about this. So we thought our first point of contact would be our GP and we asked and he said ‘yes that can be arranged.

And we also read about second opinions and he said ‘yes that can be arranged but even before we went in for a second opinion what I thought was the specialist, this cardiac specialist, he was not the only person that was doing this. There was another person always present. There was one person always present when he was doing it. The same diagnosis was made by the two doctors here when we first met them. They were also saying very much the same thing and it’s not that these peoples report will be taken to this other hospital and somebody would just look at it and start operating. They would investigate again.

So there is in effect 6 people looking at this. So what is a second opinion now? I didn’t see the benefit of going for a second opinion. I thought there were 6 opinions for me. 6 different people looking at him. And each time there would be somebody doing an echo of the heart. Each time he went somebody would do an echo of the heart and they would confirm exactly. And these reports that various doctors make out, they are made independently of each other. And they verify the two reports actually, it’s not that this report is. So I thought pretty much, yes this is good as any second opinion I could get. And I didn’t go for the second opinion. But that is an option that people might want to consider but I felt it was possibly not, not called for.

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Many parents emphasised that one of the most helpful sources of information had been other parents (see Interview 10). Talking to other parents had given them a non-clinical perspective about daily life with a child with a heart condition and they could ask questions that they might not want to ask a specialist.