Interview CH19
Brief Outline: Luke (1996-2002) was diagnosed with coarctation of the aorta, transposition of the great arteries, VSD, pulmonary stenosis and double inlet left ventricle. He died when he was nearly 6 yrs old after his fourth operation (not including cardiac catheters).
Background: Senior Housing Support Officer, single parent for 4 years. Luke's natural father left before he was born ceasing all contact by 36mths. Met current husband in 2000, he had a very special & close relationship with Luke. No other children.
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Describes the way the doctors talked to her son and explained that they always had time for him.
Describes the way the doctors talked to her son and explained that they always had time for him.
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Describes how her son's school reacted when he died.
Describes how her son's school reacted when he died.
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She went to school the next morning and obviously all the staff knew and the head of the 4+ unit which is where Luke was, he was repeating his first year at school, she had to break the news to the parents waiting to take the children into school that, that, and she said it was the hardest thing she'd ever had to do and she was very distraught. School was very supportive, both to Luke while Luke was alive and to me since.
The headmaster has been astounding, he's been brilliant. He spent all, all of the next day in the 4+ unit with the children and the children was given the opportunity in groups to say whatever they wanted to say and, about, some children said they were upset and they wished that Luke didn't have a poorly heart and 'Oh he's with Jesus, he's safe now, he won't be poorly anymore'. And one little girl stood up and said 'I'm really upset that Luke's died'. So the teacher said 'Well we are all are'. And she said 'Yes but I am because I was going to his birthday party, and now he won't be having one, will he?' And the teacher told me and she said 'I don't know whether to tell you this or not' she said 'but I will do'. And when she told me we just laughed and it was like, crying and laughing at the same time because it was so sweet what she'd said but children, yeah, they was really distraught.
School was brilliant, they had school nurse brought a teddy bear and all the children the teddy bear was placed on a special table for Luke and for the period between Luke's death and his funeral the children could go to the teddy bear and they spoke to the teddy bear and they said messages which the children think the teddy bear was given to Luke. The teddy bear's actually sitting on my living room floor, I couldn't bear for it to go. But they called it 'Luke Bear'.
There was a school disco, which they wanted to cancel and I said 'No, the children should continue as normal as possible'. So Luke Bear went to the disco and he sat on top of one of the speakers. But the children gave their messages that was then passed on by the teddy bear to Luke and I think that helped.
The school nurse was present for a, a number of days as well in case the children, although they were only 4, 5 year old's they was very attached to Luke. And even now the kids say 'Oh look, there's Luke's mummy' or, and some of the children I know visit his grave, some of them take him flowers and they do, they still talk about Luke which I like.
School have been brilliant, they doing a bench in memory of Luke in the playground and we're going to plant a tree, but we'll wait until springtime before we do that. They've been very good.
She used to get comments from people that her son's development was slower than children the same...
She used to get comments from people that her son's development was slower than children the same...
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Describes using the Child Death Help Line.
Describes using the Child Death Help Line.
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She tried to make medicine time fun for her son.
She tried to make medicine time fun for her son.
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And the antibiotics, he never used to complain because he knew that he felt so poorly. We always used to say, 'If you have your medicine you'll feel much better and that's what we want'. So we always tried to be positive. And you never heard me say 'Oh well that medicine tastes disgusting'. It was always 'Oh that's a yummy medicine'. It's like, perhaps we was kidding him, I don't know. It worked.
Is there any advice you'd give to other parents about medication?
About medication? Try and get it over and done with as quick as possible. Be light-hearted about it. Don't get stressed about it because your stress'll just rub off on the children. And try and make it into a game if necessary. We used to give the teddy bear some medicine, pretend medicine. I've seen the time I've put water in a syringe for Luke to give his teddy bears. Because that's what 'Oh my teddy's not very well. They want some medicine'. So, it doesn't hurt, sort of a bit of plain water in a syringe. Try and make it fun and I'm sure that it does work. And be light-hearted. But you've got to be firm as well.
The family spent several hours in a private room with her son when he died in hospital, which had...
The family spent several hours in a private room with her son when he died in hospital, which had...
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And my brothers and sister-in-laws came over. And I think they were so shocked that they, that they was coming, they thought they was just coming to see Luke. They knew he'd died but I don't think they realised that they was going to see him. But it just, we was in this little room, it was very private, the nurses was very good, they kept bringing tea and coffee in and asking if we needed anything. And they sat with us and explained what had happened, what they'd tried to do, what the next steps would be. And we sat in this room, we was with him until gone 10 o'clock at night, which to me was the most natural and most important thing to do.
We, we just was with him, which was so right. To be able, I, I couldn't just have walked away without spending that time with him. That time was very important.
Describes the practicalities in the hospital after her son died and the support given by her...
Describes the practicalities in the hospital after her son died and the support given by her...
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And they took care of the arrangements, the arrangements, they just, were ever so helpful. The, the lady there's really friendly. She did everything; she came to see us at home to save us from going there. They dressed him for me in his own pyjamas. Very understanding, answered all my questions, they sorted everything out with the vicar. The vicar, actually the nurse who was with me when they told me that Luke had died, his, I know her, she's from the village, her husband was the vicar. So he came over that night to see us in the hospital with Luke and he came to see us and we arranged the funeral.
Describes her son's funeral in church which she tried to keep lighthearted.
Describes her son's funeral in church which she tried to keep lighthearted.
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She describes how people reacted towards her after her son's death and says that it was important...
She describes how people reacted towards her after her son's death and says that it was important...
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People, I want people to talk about Luke. I don't want people just to think 'Oh, he's gone, let's not mention his name'. He's still in my life in a big way and he always will be.
Reflects that she didn't blame the surgeon when her child died after surgery but is thankful to...
Reflects that she didn't blame the surgeon when her child died after surgery but is thankful to...
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Explains how family, friends and acquaintances have been affected by her son's death.
Explains how family, friends and acquaintances have been affected by her son's death.
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We always believed that the doctors could make Luke better. So it's not only affected me, it's affected everybody who was in touch with Luke's life. And a lot of people when Luke first died who knew a friend of a friend of a friend came to see me or sent me a letter or sent me a card. 'We've heard such a lot about this brave little boy, we're devastated'. Which was really touching that strangers were saying such pleasant things about Luke. That was very, so he's touched everybody.
Her son had a one-to-one helper at school and when he went to school with his NG tube the other...
Her son had a one-to-one helper at school and when he went to school with his NG tube the other...
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They was very helpful, very supportive and Luke loved going to nursery. He was and the kids were really good. Luke went with NG tubes and it wasn't a problem. It was like 'Oh what's Luke got up his nose?' 'Oh it's to help him feed because he doesn't eat his dinner'. 'Oh you ought to eat your dinner, Luke'. And they moved on and they never, he's just, children just accept things the way they are. They ask questions, as long as they're told the basics that's all they need to know.
Hmm.
And then Luke started school just after his fourth birthday and he started full time into a mainstream school and he loved it. He wasn't the brainiest of children but he loved it. He did do really well. He came on, he blossomed really. He was in the school Christmas play. His confidence grew. He was very, he wasn't shy that he wouldn't speak. He just didn't, he lacked confidence. And his confidence really came on. He had one-to-one help with the physical side of things mainly. The stairs, things like that. There wasn't any steps other than the steps to go outside but like, children lining up in a queue to go into assembly or for lunch, children push. Luke's balance was very poor so Luke would have been pushed over. So he had one-to-one care for all his time at school. And he needed help, he had concentration problems a well. Luke needed like 'Come on Luke, you need to do this' or to keep bringing him back to him. But there was times when he sat on his hands and said he couldn't use a pencil because he'd got no hands. And it was because he, he found gripping a pencil difficult. So they used to make exceptions and give him a big chunky crayon rather than a slim pencil.
But he was included in as much as his ability would allow him. The same as the other children. He joined in with everything. There was nothing that he didn't join in. He did join in with everything.
Describes how her son managed to come first in the running race at the school sport day.
Describes how her son managed to come first in the running race at the school sport day.
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So I told Luke that the following day, sports day, he didn't have to join in. If he didn't want to do it you don't have to do it. Mrs O'Brien won't be cross, it doesn't matter. You do the best you can and mummy will be there, mummy will be proud whatever. And the following day me and my mum went to sports day and Luke sat with his friends and the running races come and Luke was taken to 3/4 of the way down the track and the lady behind said 'Ooh, why's he half way down the track? That's not fair'. And I didn't say anything. It was like 'Well we know the reasons why' and the whistle was blown and off they ran and on the practices apparently all the children had overtaken Luke and Luke had sort of come in last. But where he got his strength from, his little legs ran and ran and he actually came first so he got a certificate for coming first.
So it was, we cried. It was very emotional. He was so proud that he'd ran. We were so proud that he wanted to join in that he'd ran. But to actually to come first, yeah, he'd only ran a little way but for him to do it was amazing. And that really boosted Luke's confidence.
Explains that her son had a very good quality of life, even though he had a serious heart...
Explains that her son had a very good quality of life, even though he had a serious heart...
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And about two weeks before he died he learnt to go on his scooter properly. He used to stand on it and we used to push him around the garden but he learnt, he'd mastered his scooter. He was very slow but he mastered his scooter. He used to struggle with the stairs, he used to get frustrated because he wanted to go to the toilet and he couldn't walk upstairs quick enough, we had to carry him upstairs because he used to get so tired and breathless. And he used to sleep an awful lot. He used to be in bed for half past six at night. And other kids in the summer would be out playing and Luke would be in bed. That used to upset me. He'd sleep for 12, 14, 15 hours a day. Sometimes more, especially if he was poorly.
He was such a lively chatterbox and an entertainer. He was, his imagination was amazing. He was like, so imaginative, I don't know where he got it from but he was so imaginative. The things he was, he used to come out with, he used to pretend he was a magician and do little shows for us. It was so, we could see what he was doing but we had to pretend that we couldn't.
But he lived a very full life. He lived life to the full, within his limitations he. I've got no regrets, there's not one thing that I could say 'Oh if only I'd have done'' or 'If only I'd have took'' and we did it. If Luke wanted something we did it. If Luke wanted to go somewhere we did our uttermost to go and I'm so pleased, looking back, that we did. I've no regrets on that side of things. Luke did everything he wanted to do.
And we went everywhere we wanted to go. There's no, we did so much with him in such a short space of time and I'm so pleased that we did.
She arranged for her son to be brought home twenty four hours before his funeral which helped her...
She arranged for her son to be brought home twenty four hours before his funeral which helped her...
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And the morning before, during the morning of the day of his funeral it was nice to spend the time with Luke and we, a lot of people brought in things to take brooches or cuddly toys, somebody put a flower with him and everything was put inside Luke's coffin. I'd made up a little rucksack of all his little favourite things. Some birthday candles for him, all sorts of, which I look back and perhaps seem really silly things but they was things that I wanted Luke to have with him forever. His favourite teddies didn't go; my brothers had one each, but he had a different, like his third favourite teddy went with him. And his trumpet. All he wanted for Christmas, on his last Christmas, was a trumpet. So his trumpet went with him. So, and some photographs as well. His cousins and his grandparents and me and my partner.
Describes her experience of a Coroner's post mortem and comments that although she was upset at...
Describes her experience of a Coroner's post mortem and comments that although she was upset at...
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And although at the time I was very upset, I'm so pleased that they did because it's answered a lot of our questions. We had to go to the coroner's office and we made a statement. The coroner's office, the guy was every so understanding, he was, 'In your own time'. There was no pressure. It took quite a while to make rather a short statement because we was all so distraught. And while we was there they took Luke over to a different hospital where they carried out the post-mortem the following day.
The, he died on the Monday. I seen him on the Tuesday. I didn't see him the Wednesday, that's when they did the post-mortem. On the Thursday we got permission for his body to be released to the undertaker's and I had to sign some forms to say that they'd withhold some of Luke's tissues. The form clearly stated that no body parts was retained. It was just tissues and from which parts of his body. I had to sign that before his body could be released. And his body was then brought back to our village Chapel of Rest where we went and seen him every day.
Describes her experience of a Coroner's Inquest in to her son's death.
Describes her experience of a Coroner's Inquest in to her son's death.
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I thought about it for a couple of weeks and I went back and said I would like an open inquest. The coroner's office had said that they wouldn't accept a decision from me straight away. It was something I needed to think about for a little while. And two weeks later we went back and I wanted an open inquest and the inquest took place about 7 months after Luke's death, which I knew it would take a long time. And we went to the inquest. We, the statement I gave initially that when he first died was read out by the coroner on my behalf and I was given the opportunity to add or to amend anything. But I was so upset I just agreed everything that was there, I could have added a lot more to it but it was irrelevant really.
The surgeon then stood up and gave his account or Luke's past history and what he thought had happened on the day that Luke died which was that the operation was fine, there was no major problems while Luke was in theatre but unfortunately on the way from theatre to intensive care Luke's health took a turn for the worst. They couldn't decide why Luke was deteriorating as rapidly as he did and they was discussing him when he actually arrested by which time it was too late. But they didn't know why he was deteriorating.
The coroner asked him a few questions just to clarify a few things that he'd said and then he sat back down and the pathologist, under oath again, read his, not all of the report because it was rather long and very complex. He gave a brief account of what he'd found and he found that all the operations Luke had had gone successfully. He did find a lot of fluid in Luke's lungs which was just one of the things from the operation and he said that he could see that there was no other explanation for Luke's death other than natural causes. But the coroner did like a little summary of what I'd said, what the surgeon said, what the pathologist had said and he said that, excuse me, that Luke had died because of the operation. Although it was natural causes he'd died because he'd had the operation on that day. So he recorded a verdict of misadventure and it was very, it took you back to it all, it just relived it all.
We don't need reminding, but it just, it, it wasn't nice. The cardiac liaison nurse was there as well. She was very supportive. My parents and my partner came with me. We was given the opportunity to ask questions but I couldn't read them so my partner read them out for the surgeon. And it was misadventure. So we hadn't got a death certificate for Luke neither. That couldn't be released until after the coroner's inquest. So we've now got a copy of Luke's death certificate, which is like the final bit of paperwork that we'll ever get about Luke.
And then I received a letter from the coroner, a couple of days later, because Luke's they'd taken samples from Luke's body and they wanted to ask what we wanted to do with these little slides. I think there was 37 slides that they'd taken from various organs. The choices I think was for us to have them and dispose of them, sort of bury them with Luke, or they dispose of them or to give them to medical science. So I signed to say that they could go to medical science to perhaps help somebody else in the future. And they're only little slivers, they're only very small, there was no organs or anything taken.
Her GP had talked through and explained the pathologists report with her following her son's post...
Her GP had talked through and explained the pathologists report with her following her son's post...
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We were then given a copy of the pathologist's report which again had lots of words in that we didn't understand and the GP spent hours going through the report with me. He was very good, he spent a whole afternoon with me and my mum talking through the report explaining things, re-explaining things. He was very good and it must have been about October so like 3 or 4 months after Luke died the coroner's office contacted me to ask what sort of inquest we wanted.