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.
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...
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...
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...
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...
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...
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.
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.