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Parents of children with congenital heart disease

How it affects grandparents

Parents recalled that although their child's grandparents were shocked, worried, upset and devastated when they learnt that their grandchild had a heart defect, their support had been invaluable during the difficult times ahead.

One mother explains how her mother hid her feelings, trying to be strong for them, and she only found out from a friend later how devastated her mother had been. While some parents had been comforted by the grandparents' tendency to take a positive, optimistic view of the future, one mother felt she needed a more realistic acceptance of the situation.

 

Explains that she only found out from a friend at a later stage how devastated her mother was by...

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Age at interview: 8
Sex: Male
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My parents were divorced when I was quite young. So I guess my step-father is the one who's more involved with my son and I think it's, I mean, it's been difficult for him. He's not a very, he doesn't express his emotions very well but my, my mother was, was very much devastated by, by the diagnosis and I think a lot more than she let on. And, you know, I had a friend who had, who had told me after my mom had died that one day she had come to visit my mother and my mother was in tears because she knew that Andre wasn't going to live a normal life. And that was very upsetting for me because she would never say that directly to me. But it does, you know, that was quite difficult. 
 
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Explains that her baby's grandparents were always optimistic and positive when speaking to her...

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I don't really know how our family and friends really thought because I think when we talked to them they were always trying to support us. So they would just say 'of course he's going to get better' and 'this time next year we'll be on holiday' or, or you know. They tried to be really positive. I think they didn't, and also they weren't there from day to day and seeing the day to day of it all and the amount of small things that had to be done to keep Noah alive. So they perhaps weren't fully in the picture about what exactly was going on. And I don't think I would have wanted them to be because I think it would have been quite upsetting for them. 

Many felt that the discovery that their grandchild had a heart condition had been very difficult for grandparents. They were concerned for their children as well as their grandchild and felt helpless because they weren't directly involved. Several parents hadn't realised the impact on their child's grandparents at first because they were caught up with looking after their ill child.

 

Describe the impact their daughter's diagnosis had on both sets of parents.

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Mother' I think they were, I think, the thing is I think that where we're younger and we watch the news and everything and we know about advances in science and you can understand things I think from a grandparents era things like that didn't used to be repaired [Father' No] and things, cardiac problems in their age were a death sentence. [Father' Yeah] And I think for them it's been quite a shock and quite a learning curve because they've wanted to know all the information and all the pamphlets we've been talking about they've wanted to read and I think it's, I think it overwhelmed them. And I think, I think you know quite often they came into the hospital and they were speechless. I mean [Father' Hmm] just the machines, the equipment, a baby being there, the terminology of the operation. I think it.

Father' Yeah it took them aback a bit, didn't it?

Mother' I think it took them aback but I think they drew a lot of strength from being together and we're lucky that they're very, very close and they spent a lot of time together and when we were actually in the operations they were all together waiting for news and...

Father' Well I think that...

Mother' They helped each other.

Father' I think not just that, it is that the, them as grandparents it's, it's, it's almost more difficult for them because a) they're slightly removed from it, although they want to be completely involved and they're almost waiting for, for us to give them information or to say 'Come in'. Which must be terrible because we're still there [Mother' Yeah] knowing, you know, [Mother' Well they say] all the changes.

Mother' They say, they love the children as if they're their own but they are this step back, it must be awful.

Father' But not just that, I think that, then the thing I didn't realise until your mum said it to me is that you've got to understand that they're my grandchildren but also you're our children as well [Mother' Yeah] and, and you can only understand when you've got children how harrowing it is to see them distraught and upset and worried and you know you almost want to take it on yourself [Mother' Yeah] and...

Mother' We were only worried about Millie and they were worried about us and Millie.

Treatments and survival rates for children with heart conditions have changed dramatically in the past few decades. Grandparents are likely to remember children diagnosed with heart conditions who did not survive which means that they can have overwhelming fears that their grandchild's condition is much worse than it actually might be (see Interview 22).

Grandparents may want to be involved but it can be difficult for parents to keep everyone aware of developments concerning their child's condition. One mother explains how her mum had found it useful to contact the national support organisations directly when she was concerned about her grandson's heart condition but didn't want to upset her daughter by talking to her about it. She had also been able to find out extra information for her daughter.

 

Explains that her mother had found it useful to contact the national heart support organisations...

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And I think that the questions that she wanted to ask us she couldn't because, you know, she wanted to know, you know, would he die? And she can't say that to us, you know. To somebody else then she could say, and they can say 'No. This, you know, this is this' or you know, I think when you hear condition, you know, because you know the heart is something that, you know keeps your body going and so, I think, you can presume the worst. And I think that's what she did really. She got in touch with the Children's Heart Federation and the British Heart Foundation and, and they told her lots. My mum started making it her mission to come to the hospital with us which in, again in hindsight was brilliant because what I didn't hear she heard and when I'd say things afterwards she could say 'Yes, the doctor said that' or 'No he didn't' because I'd focus on one thing or I'd have a question so that'd be the main thing for me. And she would listen to all the rest for me.

But I think that she found that, you know, by talking well getting in touch, there's area contacts there, people that you can ring and I think she found by talking to other people she could sort of scale how serious this was and what the long term affects were as well. And she could ask the questions without upsetting me because I, you know, she was more concerned with not upsetting me so she was in like a no win situation. No one to ask and you know she didn't want to make things worse for me. And also sometimes when you're very close to people it's really hard to talk because you get emotional and you, you get you're almost too involved to be objective. So to have someone else say, you know, 'Well that is normal isn't it?' you can sort of go 'Oh yeah, it is'. You know, whereas you might sort of, talking, you know, me and my mum talking together, wind each other up. Sort of go, 'Is it serious, I don't know'. You know, you almost need someone to sort of stand back and say, you know, 'Yes that is bad but this is what you can do'. And just keep their level head, you know, for you. So, yeah, I think my mum found, you know, that that was brilliant for her.  

They sent her a video of the operation so she looked at that before me. And sort of said 'I don't know whether you should watch that yet. We'll give it another time when it's closer to when Jack's got to have his operation' and, you know, 'We'll look at it then'. Which it, it helps me because she helps me make decisions like that because she's found out separate information. 

Some parents recalled that their child's grandparents were concerned at first about looking after their grandchild when they were on medication, or before corrective surgery, in case anything happened and they couldn't cope. One couple felt that their baby daughter had missed out on day trips with her grandparents because they lived a plane journey away from them, and during her treatments and recovery they had not been able to visit them. One mother describes the close relationship her parents had with her son when she was a single mother.

 
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Describes the close relationship her parents had with their grandson.

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My mum and dad was very close to Luke. My mum was present with me when I had my caesarean. Dad was waiting in the waiting room. So mum actually watched Luke be born. She was always, mum and dad had a very close relationship. Because I was on my own with Luke for nearly four years my dad was not only a grandparent he was like a father figure as well to Luke. Luke worshipped his Nanna, he worshipped his grandpa and they have always been by my side for hospital visits. Luke's stays in hospital mum and dad have always been there. And they've had the phone calls in the middle of the night when Luke's been poorly. They've shared everything. They've had the good times with Luke as well. They've come on holiday with us. We've had days outings together. So they've had the good times as well as unfortunately the very bad times with Luke. 


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Last reviewed July 2018.

Last updated April 2010.

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