Parents of children with congenital heart disease

How it affects grandparents

Parents recalled that although their child's grandparents were shocked, worried, upset and devastated when they learnt that their grandchild had a heart defect, their support had been invaluable during the difficult times ahead.

One mother explains how her mother hid her feelings, trying to be strong for them, and she only found out from a friend later how devastated her mother had been. While some parents had been comforted by the grandparents' tendency to take a positive, optimistic view of the future, one mother felt she needed a more realistic acceptance of the situation.

Many felt that the discovery that their grandchild had a heart condition had been very difficult for grandparents. They were concerned for their children as well as their grandchild and felt helpless because they weren't directly involved. Several parents hadn't realised the impact on their child's grandparents at first because they were caught up with looking after their ill child.

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Treatments and survival rates for children with heart conditions have changed dramatically in the past few decades. Grandparents are likely to remember children diagnosed with heart conditions who did not survive which means that they can have overwhelming fears that their grandchild's condition is much worse than it actually might be (see Interview 22).

Grandparents may want to be involved but it can be difficult for parents to keep everyone aware of developments concerning their child's condition. One mother explains how her mum had found it useful to contact the national support organisations directly when she was concerned about her grandson's heart condition but didn't want to upset her daughter by talking to her about it. She had also been able to find out extra information for her daughter.

Some parents recalled that their child's grandparents were concerned at first about looking after their grandchild when they were on medication, or before corrective surgery, in case anything happened and they couldn't cope. One couple felt that their baby daughter had missed out on day trips with her grandparents because they lived a plane journey away from them, and during her treatments and recovery they had not been able to visit them. One mother describes the close relationship her parents had with her son when she was a single mother.

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Last reviewed December 2014.

Last updated April 2010.

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