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.

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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.

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 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.

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Last reviewed July 2018.


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