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Parents of children with congenital heart disease

Dying in hospital

When a child dies in hospital, parents can expect to be supported by hospital staff in doing whatever seems right for them. Some parents will want to wash and dress their child, others may wish to take photographs, some may want no further contact with their child's body. The hospital should also offer support to help parents deal with the practical arrangements after the death of their child, for example, registering the death and arranging a funeral.

Sometimes a child dies suddenly at home. This can be extremely traumatic, especially if the death is unexpected, or the police are called and it is treated as a suspicious death.

Here, we describe the experiences of two parents whose child died in hospital. Luke was nearly six and died unexpectedly after his fourth operation. Noah was a baby who had been in intensive care since birth and he wasn't getting any better; his mother describes how they made the decision to take him 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.

 

Noah's parents were able to talk with the hospital staff beforehand about what they would like to happen when he died. They stressed that it had been important for them to have control over what happened at this time. Noah's mother explains that they had a lot of privacy to be with their son when he died; that they had washed and dressed him and took him to the chapel themselves.

 

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. 

 

Paediatric Cardiac Units should provide a place where parents can be alone with their child's body and where other family members can congregate. Luke's mother explains that after her son died, the nurses brought him to a private room where the family could spend several hours with him. She recalls that for a few minutes she panicked at holding Luke; that the other family members were shocked at first because they weren't expecting to see him, but it had been a time which had been so important to her and was the most natural thing to do.

 

The family spent several hours in a private room with her son when he died in hospital, which had...

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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-in-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-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. 

The family returned to the hospital the next day to spend some more time with their son. The nurses had dressed him and put him on a bed settee in the intensive care ward. Luke's mother said that she had taken photos, bronze hand and foot prints and a lock of her son's hair.

Luke's mother recalls that after the post mortem her son was taken to the chapel of rest, where the staff had been very supportive in helping her to arrange her son's funeral.

 

Describes the practicalities in the hospital after her son died and the support given by her...

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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.

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.


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Last reviewed July 2018.

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