Parents of children with congenital heart disease

Funeral, post mortem & inquest

The death of a child is very traumatic and difficult for parents. The funeral arrangements must be taken care of, and distress can be heightened when a post mortem or inquest is required. The Children's Heart Federation has a factsheet on 'Bereavement'. ARC (Antenatal Results and Choices) offers support and information for parents who terminated a pregnancy or lost their child before birth.

Both parents we interviewed chose a non-religious service for their child's funeral and tried to keep it light hearted and upbeat by singing children's songs, such as 'The animals went in two by two' or 'Who put the colours in the rainbow'.

Describes her son's funeral in church which she tried to keep lighthearted.

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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 Luke's 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.

Noah's mother explains that his funeral was an opportunity for many friends and family to learn more about their son who had been in hospital since he was born. His parents could talk about him and explain to family and friends that although Noah had spent all his time in hospital he had been happy most of the time.

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.

Luke's mother, whose son had died in hospital after surgery, was able to bring him home the day before his funeral, which had been so important for her. Family and friends were able to visit Luke and she was able to spend a lot of time with her son. She said that it had helped during the grieving process to have spent this time with Luke.

She arranged for her son to be brought home twenty four hours before his funeral which helped her...

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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 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.

When the cause of death is sudden, unexpected or unknown, a post mortem may be required. Parents have the right to refuse a post mortem that is not ordered by a coroner. Noah's parents chose not to have a post mortem and felt supported by the hospital in their decision.

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.

When a coroner orders a post mortem it is a legal requirement and parents cannot refuse. Luke's mother was very upset at the coroner's request for a post mortem, but was later glad that it had been done because it answered a lot of her questions. Her GP was very supportive in talking through and explaining the pathologist's report with her.

Describes her experience of a Coroner's post mortem and comments that although she was upset at...

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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. He's gone, he's 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 he'd 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 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.

Her GP had talked through and explained the pathologists report with her following her son's post...

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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, he'd 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.

An inquest in to the cause of death may also be held. This is a public legal inquiry. Luke's mother chose to have an 'open' rather than a 'closed' inquest, which meant that they could attend. It was held seven months after Luke's death; she explains what happened and what it was like.

Describes her experience of a Coroner's Inquest in to her son's death.

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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 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.

Last reviewed July 2018.