I made a statement the day after Luke died at the coroner’s office. It was about 6 weeks later I spoke to the coroner, I spoke to the coroner’s office a lot in between and after about 6 weeks I was told the cause of death was natural causes. The operation had been successful, hed died simply and surely because he couldn’t accept the operation. Which did make things slightly easier to know that it was natural causes;

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.

We could choose whether we wanted an open inquest which is where we get to go to the coroner’s office and under oath the surgeon gives his report, answers any questions and so does the pathologist. Or we could do it, I think it’s called a closed inquest where the coroner just simply does his paperwork and that’s it;

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 Lukes 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 Lukes 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 Lukes 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 hed 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 hed found and he found that all the operations Luke had had gone successfully. He did find a lot of fluid in Lukes 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 Lukes 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 hed died because hed 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 weve now got a copy of Lukes death certificate, which is like the final bit of paperwork that well ever get about Luke.

And then I received a letter from the coroner, a couple of days later, because Lukes they’d taken samples from Lukes 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.

And then the cardiac liaison nurse, me and my mum and my partner went with her to the coroner’s office. We had to go and make a statement for the coroner because they wanted to do a post-mortem which I found really hard. They told me just after Luke had died that he would need a post, probably would need a post-mortem and I said ‘No. Hes gone, hes suffered enough. Leave it. No. And they sort of calmed me down and said that they wouldn’t be a choice, the coroner would have to be informed because hed died so soon after surgery. The coroner would have to be involved and it was his decision. But they did warn me that the chances were that the coroner would say ‘I want a post-mortem’ which is what he did.

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 Lukes 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.

I also had Luke at home for 24 hours before his funeral which I found helped me spend a lot of time with him. Although I’d gone to see Luke every day at the Chapel of Rest, he had his pyjamas put on him and he came home and he was put in his own bed and it was just so nice. We lit candles in his bedroom and a lot of people came to the house the night before the funeral. Some people went upstairs to say their last goodbyes to him. Not everybody did, which was fine. I know it, a very difficult thing. It didn’t matter whether people wanted to see Luke or not, but I was in and out of his bedroom constantly;

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 Lukes 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;;

He was happy. He loved Bob the Builder, Noddy, Postman Pat. Bob the Builder was his favourite. We took him to see the Bob the Builder live show. It was a week before his operation, last year so I’m really pleased we did that. He was such a chatterbox, he was very determined. He used to get frustrated because he couldn’t do things. He used to get frustrated because he couldn’t ride his bike but he persevered and he could ride a bike with stabilisers. Not as fast as other children but he could.

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, hed 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. Hed 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, theres 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. Theres no, we did so much with him in such a short space of time and I’m so pleased that we did;

On sports day. Luke actually joined in with the first sports day just before he was five. It was school sports day and all week, the week prior, Luke was upset he couldn’t join in. He couldn’t run like the other children. His poorly heart wouldn’t let his legs work. We had tears at night. And it wasn’t a problem. Luke didn’t have to join in. He could have sat on the side and watched; It didn’t matter. I went to school and spoke to the teacher and said ‘Look Lukes crying every night. He doesn’t want to join in, he can’t run. And she said ‘But he is wanting to join in when hes here. He is doing his best. Were not pushing him. He knows he doesn’t have to join in’;

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 hed ran. We were so proud that he wanted to join in that hed ran. But to actually to come first, yeah, hed only ran a little way but for him to do it was amazing. And that really boosted Lukes confidence;

Luke went to a mainstream nursery and they were very good with Lukes needs. They treated him as best they could as a healthy child but taking into considering, consideration his health. He also went to a mainstream school where he had a one-one helper and they was brilliant, they was very understanding, nothing was too much trouble. In fact he used to go to bed in the afternoon because he was tired. But rather than him getting into a routine of him coming home he used to go on a little bed. He just used to say ‘I’m really tired’ or ‘Can I go to sleep?’ and hed potter off and get on the bed. And it wasn’t a problem. They knew, and the other children just totally accepted ‘Oh is Luke tired? Oh hes gone to bed. Oh, OK. And that was it. So everybody has been really helpful, friendly;

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, hes 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-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. Lukes balance was very poor so Luke would have been pushed over. So he had one-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 hed 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;

Mum and Dad have took Lukes death very bad. They’re just like I am absolutely distraught. And it doesn’t seem to be getting any easier after all this time. People say times a great healer, I don’t know how long this time scale is. It’s not, it’s not getting any easier. Mum and Dad have been really affected by it as my brothers, my brothers have both got two healthy children each, they’ve been affected. And my sister-laws have and Lukes little cousins, even the littlest of them still talks about Luke and sort of, you know, ‘Why couldn’t the doctors make Luke better?;

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 Lukes 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. ‘Weve heard such a lot about this brave little boy, were devastated. Which was really touching that strangers were saying such pleasant things about Luke. That was very, so hes touched everybody.

Some people have been really insensitive, some people have been sensitive, some people have avoided me, some people have said ‘I’m here for you but I don’t know what to say. I know when it was Lukes inquest a couple of weeks ago, a couple of people said ‘[mother’s name] I can’t mention it because no matter what I say it’s not going to make it any easier for you, but you know where I am. And then other people want to talk. But I, I know who I can talk to comfortably about it and I talk to those people and Lukes name is always, we talk about him constantly to anybody that will listen to us. We talk about him, which is good; We talk about him all the time. And hopefully we always will do. And I’d like to think that people can continue to talk to him about me and say ‘Can you remember the time?’ or ‘Do you remember when Luke said, did this?’ or ‘Can you remember when Luke did that?’ or ‘Can you remember when you took him to the seaside and he did whatever?;

People, I want people to talk about Luke. I don’t want people just to think ‘Oh, hes gone, let’s not mention his name. Hes still in my life in a big way and he always will be.

We then got the post-mortem results that revealed that the surgeon had done nothing wrong at all in any of Lukes operations, everything had been carried out perfectly normally and the reason that Luke died was that Lukes little body couldn’t take the operation, it was just too much for him. So that was a relief but throughout, even before I knew I didn’t blame the surgeon and I still don’t. It’s like without the surgeon, the consultant, Luke would have died within a couple of weeks of being born. So I see it that the surgeon and the consultant, they gave me nearly 6 years with Luke, not that they’ve took, took him away now. Yeah, I’ve lost Luke and it’s, it’s horrendous without him but I’ve got such good memories of those 6 years with Luke. Theres been a lot of sad ones within that time when Lukes been really ill, but weve got some, some great memories of the time that we did have with Luke.;

It was quite a nice funeral if a funeral can be nice. I didn’t want it to be really religious service because at the end of the day there can’t be a god because they take, they make children poorly and they take them away from you. But he was, he was very light-hearted. We was very involved with it. I wrote quite a long speech to be read out which the vicar did and we had children’s songs ‘Who put the Colours in the Rainbow. We didn’t have your traditional heavy religious hymns, we had quite light-hearted songs which was quite nice. And we had music playing. We didn’t have the organ as we walked into church. We had a couple of songs that ‘I Need a Miracle was the one, we had ‘Reach for the Stars’ when we went in which I thought was appropriate and coming out Lukes favourite record was ‘I Need a Miracle. And we always used to say to him ‘You do, mate. And, so that was very fitting. And then afterwards Luke was buried up at the local cemetery which is where we go every 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 Lukes 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.

And they took care of the arrangements, the arrangements, they just, were ever so helpful. The, the lady theres 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, shes 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.

We was all in pieces and a couple of nurses came in and I said I wanted to see Luke. And I expected to walk out of the room and see Luke in his intensive care bed but they said no; I stood up and they said for me to sit down. And they brought Luke to see me, they wouldn’t let me see him in his surroundings because I suppose there was still equip, equipment. The crash trolley would still have been there and at the end of the day it didn’t work so they brought Luke, they wrapped him in a quilt cover and they just carried him in and he looked just like he was, he was fast asleep. They wrapped him in a, the quilt cover was a kiddy one, it had Tigger on. And I, I couldn’t have Luke on my knee, I panicked to begin with. So my mum held Luke and cuddled him but then it seemed so natural. Within a couple of minutes they handed him to me and we cuddled him and we stayed with him. Some of my family come, my brothers and my sister-laws came over and the hospital let us use a phone so we was private not standing at a public phone to make as many phone calls as we wanted in private to tell family and friends what had happened.

And my brothers and sister-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 hed 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;

And the times he was on diuretics he didn’t like the taste of them but he knew that if he didn’t have them hed be poorly. I was always really straight with him. I used to say ‘Look if you don’t have this medicine you’ll be really poorly and we don’t want that, do we?’ And he said ‘No, I’ll have it. And a tut and a sigh hed have it. Occasionally hed run away but that was more to make a game rather than because he didn’t want it. Hed go and hide in the porch and say ‘You can’t find me. And it’s like I’d go in and hed, gave his medicine. And his cousins used to like help him. If the cousins was here and it was medicine time they used to watch me prepare his medicine and they used to like help, play nurse and give him his medicine as well. So we just used to try and make it as fun as possible. And as quick as possible and I used to say ‘The sooner you have your medicine, the sooner you’ll get better’ or whatever;

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 Child Death Help Line and the Elder Centre at Liverpool have been helpful. I think the hospital gave me a leaflet about them and I rang one night when I was in a bit of a state, on their help line and all the people who work on the help line are bereaved parents themselves so although they don’t know what you’re exactly feeling they are, or have been along those lines somewhere in the past. That was very helpful. I’ve only rang them the once but I also got put on their mailing list so, I think it’s about every 6 weeks I get a newsletter from them. And it’s just nice to know that you’re not on your own in this situation. Theres a chance for you to put poems and photographs, stories, just a couple of words if you like. So hopefully come the summer Lukes first anniversary of his death is the 1st July. His birthday’s the 25th July, so weve got two anniversaries very close together. So hopefully were going to put something in the newsletter for Lukes first anniversary, although weve already had his first birthday without him;;

They always used to sort of tickle his tummy while they was listening to him and say silly things, doctor’s looking in his ears, they used to say ‘Oh weve carrots growing today, Luke or ‘Have you cleaned you ears?’ They always used to play with him and ask him what hed been doing either at nursery or at school. Ask him about his home life and his food and ‘Have you been to MacDonald’s?’ and ‘Where are you going on holidays?’ and ‘What are you doing today?’ They always had plenty of time for Luk; which is, I think really important to build a relationship and it felt like wed got a relationship with the doctors rather than just going to see a doctor. They’d always got time for him. Wev; some of the time weve seen the doctors down the corridor and they’ve stopped to pass the time of day with Luke to build Lukes confidence with the doctors, I think is extremely important and they definitely had Lukes confidence as well as our own.

Lots of instances where people have said things. I used to get, ‘cos Luke didn’t sit up until he was 9 months old ‘Oh, isn’t he sitting up yet? Oh, my kid’s the same age and they’re crawling. And then there was one time when Luke had been in hospital and hed been very poorly and wed gone to a Christmas fair and I’d seen a lady who’d had a child a couple of months after Luke and she said ‘Oh isn’t Luke walking; Oh my daughter’s been walking for months. Well her daughter was a healthy little girl, not got Lukes problems. And it used to really upset me. It used to make me really angry and I used to get very upset and I just used to say ‘Oh no’, but while the other children was playing and running and wanting to walk and things Luke was basically fighting to live on a day-day basis without having to worry. That was the last thing. But it didn’t matter to me that Luke didn’t walk;

I’d phoned the care lady, Lukes one-one helper. She was my point of contact when Luke was poorly and she let all the other staff at school know what was going on. So I’d phoned her to say that Luke had had his operation but he was very poorly and then after Luke died I phoned and told her that Luke had died. She let all the staff know, she was absolutely distraught. Shed become very fond of Luke. She was like the third child of hers. Luke was like her third child;

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 shed 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, hes 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 hes with Jesus, hes safe now, he won’t be poorly anymore. And one little girl stood up and said ‘I’m really upset that Lukes 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 shed 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 Lukes 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, theres Lukes 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 were going to plant a tree, but well wait until springtime before we do that. They’ve been very good.