Sources of support for parents of children with congenital heart disease

Many parents said that they had received the best support from talking to other parents of children with congenital heart disease. They had found that their experiences or concerns were not unusual, they could share their concerns and ask questions, seeing that other children and parents had got through similar difficulties gave them hope, and it made them appreciate that their situation could have been worse. (See ‘Messages to other parents‘). For one mother other parents provided a very important support network when her husband found it difficult to give her enough emotional support.

The best support she received was talking to another parent whose child had congenital heart…

Age at interview 3

Gender Male

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The best support I’ve ever had is talking to actually a friend who’s had another heart child. And that was, I’m never frightened of saying anything to her and she isn’t to me. So that’s, that’s probably the best source of support you can have really. I mean, more than family.

You say you’re not frightened of saying anything to her?

That’s right. You don’t like to, I don’t like to discuss how frightening or how awful a particular moment in hospital might have been. And I don’t like to discuss it. But I can just mention it to her, shes, shes been there and she knows exactly what I mean. And she does the same with me as well. And we don’t have to explain how awful or how good a certain moment is, because they know.

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National heart organisations can give information, advice and support and can put parents in touch with other families (see ‘Resources and Information’ section). One mother said that the first phone call had been hard to make but she was pleased she had. Another couple felt very alone and unsupported for the first six months after their son was diagnosed until they got in contact with the British Heart Foundation.

They felt very alone and unsupported for the first six months after their son was diagnosed and…

Age at interview 5

Gender Male

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Mother;Well, we would have liked to have, we would have preferred if they’d been straight with us and told us in layman’s terms what was actually wrong with him and then hopefully gave us leaflets on each of the problems that he had and let us read them to see exactly what was wrong with him and what they could do to help him. But we were given nothing. We were given it in medical terms and all we were told was that if you give him the operations you could have him until a certain amount of time.

Father;And also counselling, [Mother;Yeah] which we never got.

Mother;We had no counselling.

Father;We felt so alone.

Mother;No help.

Father;And we felt really alone, eh?
;We were on our own coping or trying to cope as best we could with a child with congenital heart disease. We knew nothing about it. We didn’t know how long he was going to live or [Mother;No] anything;

Mother;And it wasn’t until we actually got in touch with the British Heart Foundation that they gave us some, an absolutely fantastic booklet that explains everything that you can think of and it was then that we read the symptoms. We had a list of symptoms that he had and we read each and every one of the symptoms and that’s when we realised what was wrong him.

Father;And if you, if you felt down about it at one day, if you were really depressed about it you could phone the British Heart Foundation up and you could actually talk to somebody on the phone who knows about that sort of condition that weve got – eh? [Mother;Hmm] our son’s got and they can talk to you and I’ve phoned umpteen times and when, when I’ve come off the phone, I’ve felt slightly better because I knew a bit more about what we were going to go through. But we did not have a clue what we were going to go through, eh?

Mother;Yeah, it was very bad. I mean, OK people in hospitals and that, surgeons and things, they know these symptoms, they work with that. Parents don’t. It’s your child. It’s not somebody elses child, it’s your own.

Father;It’s not a number;

Mother;So, I mean, they work with that, that’s their job. OK they’re great at doing what they’re doing but that is your children and you, you’ve just got no idea that the emotions and everything that you feel from day one and if they explain things a little bit better and tell you about leaflets and help groups that you can go to I think it would help.

Did you speak to a nurse, was there a cardiac liaison nurse?

Mother;There was after, when we went for [our son’s] first operation. [Father;Hmm] But that was the first, he was 6 1/2 months old. That was the first we had really spoken to anybody like that.

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Some parents find local supports group helpful. One mother describes the benefits of going on a charity open day and meeting people who had experience of what they would have to go through. Another felt that the support group she went to tended to focus on negative things and she found this unhelpful. One mother had valued an internet support group.

Describes the benefits of going on a charity open day and meeting people who had experience of…

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And one thing that we did which was really helpful to us was that we went on a charity open day. Again it was Left Heart Matters even though it turned out that [my son] didn’t have Left Heart Hypoplasia and we went on, on their open day and what we found really, really helpful was that at that event there were people who had been through what we were going through but had come out the other side and they could look back on it. Whereas when you’re actually in the hospital environment all the other parents are going through the same as you at the same time so nobody can actually sort of say ‘We got through that and we can look back and say ‘It was horrible but look at what weve got now.

So that’s something that I’d say was really important to us, was to actually meet parents who’d been through what wed gone through but had come out the other side and had like a little toddler running round or even a young child running round. So that was really a very important thing.

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Felt that there was a tendency in the support group she attended to focus on negative things and…

Age at interview 2

Gender Male

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Then again theres the other side of it that, you know, sometimes I’d go to these support groups and because I’d got through the pain and I was ready to be positive and ready to face it, I just found that a lot of them were focusing on the negative things. And it almost became a competition as to see whose child was the sickest and for me, personally, I just wanted positive reinforcement. And I wanted people to say you know this is really going to be good and everythings going to be fine. And I wasn’t getting that there, so I stopped sort of getting involved with them, after a while. But they were when I needed them, and they gave me the information that I needed at that time. So they are good, they have got a role, definitely.

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Not all parents felt comfortable with support groups. One mother did not want to get too involved in other people’s experiences because it was difficult to cope when a child died. Another complained that parents seemed to compete to claim they had the most severely affected child. One mother who spent four and a half months in intensive care with her baby said she became saturated with all the good and bad news.

Many parents described the support they had from the cardiac care team at the hospital. In one case, intensive care nurses had taken time to support the whole family. Many said they had been able to contact the ward when they had concerns about their child at home (see ‘How it affects daily life’ and ‘Follow-up’). Some consultants had helped by writing letters for insurance companies or for child-minders.

Health Visitors, District Nurses, GPs and the cardiac liaison nurse can offer support when parents are at home. One mother explains that the cardiac liaison nurse was her lifeline when she was caring for her baby at home after surgery. Another describes finding it very hard to ask for help but that once her health visitor was told about her problem she had become very supportive.

They felt very supported by the cardiac liaison nurse, intensive care and ward nurses.

Age at interview 3

Gender Male

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There was a sister who was a liaison person, officer and she was very good. She used to come to us and see that we had got a bed for the night in the hospital. Basic practical things. She used to discuss what the consultant had told us that day, how Alex was doing and she would liaise basically with the medical staff and with us and she was a good support in the Intensive Care Unit, just for knowledge.

But I found that the greatest support in Intensive Care was probably the nurses. They were very good. As they treated Alex they would talk to us all the time and say ‘That’s OK, don’t worry about that. That, that’s just normal. Were going to this now. And they were a huge source of support. And the ward as well. We would have nurses saying to ‘Oh, truncus babies do very well you know. And that made us feel a lot better, a lot better.

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Describes finding it very hard to ask for help but that once her health visitor was told about…

Age at interview 4

Gender Male

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So it was very hard. That was the hardest thing, I just felt all alone. Because our parents were not here, they obviously wanted bulletins on how, on how things were going and I could never be really honest and say ‘well I’m really worried because I didn’t want to worry them because they were over, over the water and they couldn’t just pop in and comfort me or see how our son was doing. So I always felt as if I had to put on a brave face for them. I always felt that I was bottling things up and this went on for a few months until I was able to get a grip on things.

When we came back I was here alone again. My older son was at school then. I suppose I did like go into myself a bit again as I had done the first time. But I was more willing to see people, but nobody came to see me. My health visitor didn’t come out to see me. My GP didn’t come out to see me. Nobody came out. I didn’t ring anybody up or ask, ask them to come and see me, but I was desperate for somebody to just to come, to come out to see me. Then probably about a month or six weeks after we were home, I had a card come through from the health visitor, saying to come for this like routine check up at clinic and I just rang up, it was the voicemail, and I said, I’m sorry we can’t make it. I didn’t say any more than that. But a friend of mine, had, had her appointment was about ten minutes after ours. So when she went, she said, ‘have you been, been to see me. What happened was our normal health visitor had gone off sick, she was on long term sick leave. So the person that had taken over wasn’t aware of [our son] they hadn’t yet received the information from the hospital.

So here was me thinking, nobody cares, I’m all alone. Why hasn’t somebody been out to see how were doing? When really, it was a matter of, they weren’t aware and I, I should of picked the phone up and asked for help. I really feel as if I really should of rang somebody up and said can somebody please come out and see us. But I didn’t, I was waiting for someone to come and knock on my door. And that’s wrong. You should, I realise now, you should not be afraid to ask for help. If I need, I mean, whenever this happens again, I shall be ringing up asking someone to come out and see us because it is just too much too cope with alone. I really, really would have benefited from having somebody. And once the health visitor came out, she was great. She was coming out a couple times a week and she wasn’t really doing anything, just coming and having a chat and that was what I needed. Then somebody from hospital came out to see us and that just started the ball rolling. Then I was able to relax a bit, a bit more because I didn’t feel so alone.

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The GP practice had helped by providing quick appointments or getting prescriptions after their child had been diagnosed. Some said they had to be assertive in getting the provision they needed, for example physiotherapy support or prescriptions for oxygen cylinders. A few parents had introduced themselves to their GP when their child was well. Sometimes parents found GPs were less experienced in dealing with congenital heart conditions and preferred to contact the hospital for follow-up care.

Describes the support she received from her GP.

Gender Female

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We had great, great support from my GP actually. We did. As I said we moved house actually, we moved to a different area before her operation so we were on the waiting list and so when we moved in I went to see the GP and said, ‘This is my daughter and shes got this problem’ and I brought the letters from the hospital and, it’s a lot to kind of present a GP with; shes got this complex lesion, she needs this operation, whatever. And the GP was great. He said, ‘That’s fine. How can I help, what can I do?’ He was, was really sort of supportive. When we needed drugs when we came out of hospital they got them for us straight away and, they, they were very help, helpful.

And they’v; always probably seen her quite quickly if shes had any problem because they know that she does have a heart history as well. So they probably have been very supportive in that way.

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Respite care can support mothers by giving them a break from the responsibility of looking after their child. One mother had spent three weeks in a mother and baby unit when she was finding it difficult to care for her baby at home. A single mother describes the respite support she was given for six months when her son was a baby.

Describes the respite support she was given for six months when her son was a baby.

Age at interview 3

Gender Male

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Yes, the hospital I could contact at any time if I was concerned about him. They did also organise sort of a respite for me. They had an organisation that had charity workers and they would come in for two hours one day a week and they were fully aware of his condition and I felt confident leaving them with her. And that was a great help. Although it was two hours a week, it was just nice to just be able to walk out of the door on my own with no children at all and just walk down the road. You know, and just have that break of, of handing the responsibility over to somebody else. Not so much not having screaming children or anything like that, just suddenly not having that ultimate responsibility because it is quite a weight on your shoulders and, you know, you just [sigh], and it’s just nice to go, just walk down the road, sit on a park bench and just relax for 1/2 an hour or whatever;

Typically you try and cram as much as you can into that two hours. You know, ‘Oh, I’m going to do this, that and the other’ you know but I think the main thing was to have that responsibility taken away just for a little while and that was a great help I have to say. It didn’t, it didn’t go on for very long. I think sort of 6 months maybe but it was, it was a great help. Yeah, so we did have that support.

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A few parents had found support in their religious faith and from the church community.

Talking to health professionals

There is no easy way to tell a parent that their unborn baby or child has a congenital heart defect. But how parents are told...