Parents of children with congenital heart disease

Waiting for an operation

Parents whose child is having heart surgery for the first time can be very frightened. Several said they were scared that their child might die and many were apprehensive about what the operation would be like.

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One couple waiting for an operation date had been helped by seeing other children at hospital appointments who had already had surgery. One father explains that they were afraid before their baby had his operation, but waiting two months for surgery gave them the strength to accept that it had to be done.

Several children were well while they were waiting for their operation. Parents had mixed feelings - wanting their child's operation done and not wanting it to happen.

To one couple it felt like a shadow hanging over them until the operation took place. Another felt they were living in limbo - they had not been able to plan anything. One couple said that their child's future operation was always at the back of their mind, but they tried not to dwell on it.

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Another mother had felt upset giving her daughter a bath in the days leading up to her operation because she knew her chest would never look the same again.

Some children had had several operations. Parents said that every time their child had an operation they had the same feelings and were frightened that their child might die. Parents of a child who had surgery as a newborn describe their feelings when their daughter was waiting for her second operation.

One mother said that it was easier the second time her son had surgery because they knew what to expect and were prepared for possible setbacks.

Parents said that it was hard to give consent to an operation when their child was happy and healthy, but they had focused on the long-term benefits of their child's operation.

Some parents had very short notice of their child's operation. One couple had a phone call from the hospital on a Friday asking if they could come to the hospital the next day for their child's operation on the Monday.

When operation dates came at short notice, parents were busy making practical arrangements and they said they did not have time to worry. One mother who had been given a date in advance said she found the slow build up to the operation agonising.

Sometimes operations need to be cancelled at the last minute because of a shortage of intensive care beds, an emergency admission of a newborn baby, or the operation of the child before them takes longer than expected. Parents found this very distressing, especially when it happened three or four times. One couple remarked that although it had been extremely distressing and difficult to cope with at the time, in hindsight they realised that their child's place had to be given to a more urgent case.

One mother had found it very difficult to explain to their 3-year-old daughter that her operation had been cancelled when they received a phone call an hour before they were leaving the house.

Sometimes treatment plans change, which can be hard for parents. One couple were distressed when they were told that their daughter's first stage operation hadn't been successful and had to be repeated. Another mother was upset when a catheterisation planned for her child was cancelled.

Last reviewed December 2014.

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