Parents of children with congenital heart disease

Sources of support

Many parents said that they had received the best support from talking to other parents of children with congenital heart disease. They had found that their experiences or concerns were not unusual, they could share their concerns and ask questions, seeing that other children and parents had got through similar difficulties gave them hope, and it made them appreciate that their situation could have been worse. (See 'Messages to other parents'). For one mother other parents provided a very important support network when her husband found it difficult to give her enough emotional support.

National heart organisations can give information, advice and support and can put parents in touch with other families (see 'Resources and Information' section). One mother said that the first phone call had been hard to make but she was pleased she had. Another couple felt very alone and unsupported for the first six months after their son was diagnosed until they got in contact with the British Heart Foundation.

Some parents find local supports group helpful. One mother describes the benefits of going on a charity open day and meeting people who had experience of what they would have to go through. Another felt that the support group she went to tended to focus on negative things and she found this unhelpful. One mother had valued an internet support group.

Not all parents felt comfortable with support groups. One mother did not want to get too involved in other people's experiences because it was difficult to cope when a child died. Another complained that parents seemed to compete to claim they had the most severely affected child. One mother who spent four and a half months in intensive care with her baby said she became saturated with all the good and bad news.

Many parents described the support they had from the cardiac care team at the hospital. In one case, intensive care nurses had taken time to support the whole family. Many said they had been able to contact the ward when they had concerns about their child at home (see 'How it affects daily life' and 'Follow-up'). Some consultants had helped by writing letters for insurance companies or for child-minders.

Health Visitors, District Nurses, GPs and the cardiac liaison nurse can offer support when parents are at home. One mother explains that the cardiac liaison nurse was her lifeline when she was caring for her baby at home after surgery. Another describes finding it very hard to ask for help but that once her health visitor was told about her problem she had become very supportive.

The GP practice had helped by providing quick appointments or getting prescriptions after their child had been diagnosed. Some said they had to be assertive in getting the provision they needed, for example physiotherapy support or prescriptions for oxygen cylinders. A few parents had introduced themselves to their GP when their child was well. Sometimes parents found GPs were less experienced in dealing with congenital heart conditions and preferred to contact the hospital for follow-up care.

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Respite care can support mothers by giving them a break from the responsibility of looking after their child. One mother had spent three weeks in a mother and baby unit when she was finding it difficult to care for her baby at home. A single mother describes the respite support she was given for six months when her son was a baby.

A few parents had found support in their religious faith and from the church community.

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Last reviewed July 2018.

Last updated April 2010.


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