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Parents of children with congenital heart disease

Interview CH28

Brief Outline: Noah (2000-2001) was diagnosed with critical aortic stenosis at 12 hours old. He died aged 4 and a half months old following three operations to try to repair his heart. Noah spent 4 and a half months in intensive care.
Background: Parents marital status: cohabiting. Occupation: Mother-Researcher, Father-Internet programmer. Other children: one child aged 5 weeks old. The family do not live close to a specialist hospital.

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Explains what it was like having another baby after her baby died from congenital heart disease.

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 we'd 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.  
 

Explains that her baby's grandparents were always optimistic and positive when speaking to her...

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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. 

 

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.

 

CHD was diagnosed soon after birth. Describes having to follow their baby who had been...

CHD was diagnosed soon after birth. Describes having to follow their baby who had been...

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And Noah went in an ambulance and we couldn't go with him; we had to go separately and we had to wait for relatives to take us to the hospital. And when we got there, I think it was in the early hours of the morning, the surgeon met us there and they explained that the operation that they thought they would have to do. Noah was on a ventilator and they had lots of support drugs. It was really scary but they said if he got through the surgery he would stand a good chance of being okay.  

So I think they operated in the early hours of the morning and they gave us a room to go to while they were, while they were carrying out the operation and we just lay there really frightened and waited until the surgeon had finished. And the surgeon came out and told us that he had survived the surgery and was doing really well and we were allowed to go on to the ward and see him. 

 

 

Explains how they made a decision to take their baby off the ventilator.

Explains how they made a decision to take their baby off the ventilator.

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It was a real roller coaster because in a way I think after your baby has survived such a major operation there is a, a feeling of joy, really. Hooray, he's got through it, he didn't die, he's come off the operating table, he's got through the next 24 hours. And you would feel good and people would be relieved. Your family would be relieved and your friends would be relieved and you might even manage to go out and have a drink and try not to, you know, try and relax a bit. But then as the days following the surgery continued and he just levelled off, he didn't continue improving. That was the hard, they were the hard days, they were the depressing days because that is when you thought well, they've done this huge operation, they have done the thing most likely to help and it has still not helped. And that is when you really felt disheartened. 

And after the third major operation when he still didn't pick up and he didn't come off his ventilator that is when we all felt really, we'd just had enough and he had had enough and we thought, you know he's never going to get out of here. And that's when'

I don't think we ever gave up until the day that he died though. We never gave up hope because we always thought whilst he is being so brave and he's smiling and looking, you know he just had a look that he wanted to carry on. And whilst all that was there we kept rooting for him to get better but in the few days before he died he just started to look a bit pissed off, really. If you can say that, you know he just started to look like he had had enough. And I think also the nurses who were looking after him started to feel that they had had enough of having to fiddle about with him and they wanted him to have a bit of peace as well. And I think they wouldn't have wanted to see him go through any more. You know he had lived in those wards all his life and the nurses who looked after him were very loyal to him and looked after him beautifully. And I think they had had enough of seeing him, you know, go through so much.

 

 

They chose not to have a post mortem after their baby died and they felt supported by the...

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They chose not to have a post mortem after their baby died and they felt supported by the...

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We didn't let anybody touch him after he'd died because we wanted to claim him back in a way. I think also around the time Noah was ill there were a lot of things in the paper about organ donation and children's bodies being used after they had died without the parents' consent so we were quite adamant that we didn't want anything to happen. We didn't want the post-mortem; his body had been through enough really. And the hospital were really good in that way. They didn't try and persuade us to let them do anything that we didn't want them to do.  

 

 

It had been important as parents to have control over what happened when their baby died in...

It had been important as parents to have control over what happened when their baby died in...

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But we, but because of that we had a lot of control over what happened in the end when he died and they moved him off the ward into a side room so that we could have some privacy. And a friend of ours who's a vicar came and blessed Noah and he died a few hours later. We took him off the ventilator and we held him and he died in my arms and it was really lovely because he looked at me and he looked at Sam and he grinned at us both before he died. He wasn't very conscious by then because we had given him a lot of pain relief. But that was really special that he did that and we knew it was the right thing to do and we kind of felt that he was, in a way, for the first time since he had been born we felt a huge sense of relief because we knew he was safe. We knew he couldn't get any worse, in a way. So in some ways it was a relief, for him it was a release from all the constant having to have things done. And it was sad because we won't see him grow up, but I think by that stage we had come to accept that even if he did get out of hospital he wouldn't live to be a man, probably so. But it was important to have that control at the end and we bathed him and washed him and dressed him and took him down to the chapel ourselves. And we arranged his funeral ourselves. 

 

 

Describes how women she had known when she was pregnant did not know how to talk to her after her...

Describes how women she had known when she was pregnant did not know how to talk to her after her...

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Yes, I went to a mother and baby group in the village where we live and I was still pregnant when I went to the mother and baby group and there was another pregnant lady there as well and lots of women with new-born babies. And you know, they were all saying 'well we'll see you in a few weeks when you have had your baby'. And I saw a few of them afterwards and they didn't, they were really embarrassed and didn't talk to me and just kind of ignored me and that was really hard.  It was hard, generally, because there were a few people who would have seen me pregnant and then not seen me for 4 ' months and seen that I didn't have a child with me. And it was difficult.

 

Describes problem when attending antenatal classes during her second pregnancy after her first...

Describes problem when attending antenatal classes during her second pregnancy after her first...

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But generally the most difficult thing is that all the time in your life you meet people who are asking 'have you got any children?' And then when I was pregnant the second time round people were always saying 'is this your first baby?' and I never wanted to deny that Noah had existed so I have always told people 'no it's not my first, my first son died'.  And that can be difficult because you don't want to upset people but at the same time it doesn't feel right to pretend that you haven't had this child. It's a horrible thing to do.  

So it was really difficult because when I was pregnant for the second time I wanted to go to National Childbirth Trust classes so I rang up about them. And they said 'well, it's a bit difficult because should you go to the one for first time mums or should you go to the one for second time mums?' And they were saying 'for the first time mums we will be talking about labour and all that sort of thing which you know about because you have done it so you probably shouldn't go to those classes. But if you go to the ones for second time mums they will all be talking about their toddlers and how to cope with a baby and a toddler'. So there were times when I felt that I didn't really fit in but again, the Compassionate Friends web site helped with that because I knew that I wasn't the only woman who didn't fit in. And in the end I went to the NCT classes for second time mums and I didn't tell them immediately but we all talked about our first births and how we would like things to be different the second time round and all these sorts of things. And then I think in the second class, people were talking about how they would introduce their new babies to their toddler and it was at that point I had to tell them about Noah. But they were all fine about it really so that was okay, it was a relief to tell them.

 

Describes being upset that because her baby had died people did not acknowledge that she had...

Describes being upset that because her baby had died people did not acknowledge that she had...

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I did and I got really upset when people would act as though I didn't know anything about babies or children. Friends who had babies would treat me as though I was a childless woman. And I wanted to say to people, when other friends or relatives had babies, I wanted to say 'oh that happened with Noah or Noah used to do that'. And I could see people squirmed a bit and felt a bit uncomfortable almost like if they didn't want their healthy baby to be compared with this baby that's been in hospital. So that was difficult and I think it was a relief to actively be a mum again because you are not in that awkward situation any more.
 

Explains that they don't regret the decision they made to keep trying with different operations...

Explains that they don't regret the decision they made to keep trying with different operations...

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I think afterwards, when he died and people talked to us about it, I think they thought we had been through a really hellish experience and that Noah had had a terrible, terrible life in hospital. And, you know, he did have to have a lot of things done to him, he had a tracheotomy and he was always having lines put into his veins and three lots of open heart surgery. And I think people thought he had a terrible life and, you know, it was really sad and we were really sad parents. But we don't look back and remember them as really bad days. We look back and we remember them with a lot of warmth because he was our baby and we spent 4 ' months with him and the nurses and doctors and surgeons were all very loving and caring for the most part. They were fantastic. So I wouldn't say that we ever regretted it. There were times when I thought would it have been better if we had just come home the day he was born and he'd have probably have passed away in his sleep or something. There were times when I thought would that have been better because he wouldn't have had to go through all the surgery. But in actual fact we would never have got to know him or got to see him smile or anything like that so I think we did what we thought was right at the time. 

 

Describes the impact Noah's death had on his grandparents when subsequent children were born in...

Describes the impact Noah's death had on his grandparents when subsequent children were born in...

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It was very hard, I think it was very hard for everyone because our families were worried as well that something was going to go wrong. I know for Sam's parents had 2 other grandchildren between Noah and Alfie being born and when those 2 girls were born they were really worried, especially the grandchild that was born after Noah, the first one. They were petrified that something was going to go wrong again. And I think my Mum was the same when I was pregnant with Alfie. The second time she was really worried and my Dad, a week after he was born rang up in a huge panic and asked me had I got a monitor for his cot to check that he was breathing. So it affected everybody.

 

She had emailed other bereaved parents through the Compassionate Friends website, which had...

She had emailed other bereaved parents through the Compassionate Friends website, which had...

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We hadn't lived here for very long before I had Noah so I felt quite lonely. Sam went to work and I felt that I was supposed to just get on with life and maybe I should start looking for a job but I didn't really feel ready to look for a job. So I had a few months of feeling really lonely but I got in touch with other people whose, whose children had died on a web site for, for parents who had lost who've lost children in lots of different ways. So I spent quite a lot of time e-mailing other parents and that was quite useful because you didn't feel so lonely then. You knew that you weren't the only person in the whole world who'd been through that.

How did you find that web site?

I can't remember now but I think somebody must have told me about it.

Can you remember what it is called?  It might be useful for other people.

Yes, it's Compassionate Friends is the web-site and lots of parents whose children have died in all different circumstances, they can write a little bit on the web-site and then they can e-mail other parents who have had similar experiences. And I am still in touch with quite a few people. And that was useful also when I got pregnant again, the second time because I was in touch with a few other women who'd lost babies and then gone on to have other babies so we could talk about how we felt. And they could say how they felt after their second child was born because we didn't know how we would feel and we were quite scared and everything. So that was really useful and it was useful because sometimes you're not sure you actually want to pick up the phone and talk to somebody and you can control it yourself if you are e-mailing somebody. You don't have to listen to them; you don't have to reply there and then. So it is quite a nice way of doing it.

 

Describes her baby's funeral at a woodland burial site and explains that at his funeral they were...

Describes her baby's funeral at a woodland burial site and explains that at his funeral they were...

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We buried him in a woodland burial site. We were really lucky because we'd been, everything just seemed to fall into place. We had been put in touch with somebody who was setting up this woodland burial site and then we found a basket-weaver who weaved like a Moses basket with a lid on which we used to bury Noah in. We found a really nice vicar to do the service and me and Sam and Georgie all spoke about Noah during the service and we sang the 'Animals Went In Two By Two'. We tried to keep it upbeat and jolly because we didn't believe we'd had a miserable time with Noah and we didn't want people to come to a miserable funeral and mourn. We wanted to people to wear bright colours and we wanted them to plant wild flowers in the field and we wanted them to be positive because he was a baby and we wanted to do things that a little baby would like. And I think we managed to do that and it was a really lovely day and in some ways it was a day for people to, for family and friends who had never got to meet him, to meet him because obviously normally they would have done. And so we put lots of photographs of him up around the walls in the church hall and we talked to people about him. We told them what kind of little boy he was, that he grinned and that he had a little bunny that he liked to feel its ears. And all this sort of thing, we chatted to people about him so that we felt that they had got to know him. And, importantly, that they got to know that it wasn't a really miserable existence that he had had because despite everything he went through his pain was controlled and he was happy most of the time. 

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