Parents of children with congenital heart disease

Telling others

It can be hard for parents to know how to tell people that their unborn baby or child has a congenital heart defect, and for others to know how to react. Many found it too upsetting at first to talk to others about it, apart from close friends and family.

Some found it hard to tell people because they either thought it was something very severe or it was a 'hole in the heart'. Many said that people did not really understand the complexity of their child's condition. One couple describe how information about their son's heart condition became distorted in being passed on to others. Some older people did not realise that advances in technology enable many children to survive and go on to lead normal lives (see 'How it affects  grandparents').

Several parents found that friends or relatives did not always understand why outcomes and treatment options should be uncertain. One mother describes various different reactions from friends and family.

Sometimes another family member has the condition, which can influence their reactions. One mother describes how they overcame the problem when a senior member of her family disagreed with the treatment her son was being offered for his bradycardia.

When parents discover during pregnancy that their child has a heart problem, the diagnosis and the outcomes may be uncertain. Parents had to cope with telling family who were looking forward to the birth of a grandchild, niece or nephew. Many were shocked and upset but at the same time supportive.

A few parents gave their family only limited information until they knew the full diagnosis and tried to be positive and reassuring because they didn't want to worry them.

Some mothers found it upsetting to cope with questions or interest in their pregnancy from people who didn't know. One mother explains that she stopped telling people about her baby's heart condition during pregnancy because she realised it upset them. Another decided to prepare people by saying that her baby might need surgery at birth, so that they weren't shocked or alarmed when her baby was born.

Sometimes people don't know what to say or how to react. Some parents said friends had avoided them or were too afraid to ask. Others were optimistic and encouraging. One mother describes telling friends who were shocked and frightened for them and explains that when one friend was honest with her about how she felt it was a great help to her.

Some parents told their work colleagues and found they were very supportive. One mother felt it was important that people at work knew what she was going through. When one father told his work colleagues, he was surprised by how many of them knew of a child with congenital heart disease, and they were doing well, which he had found comforting.

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One father did not tell his family, who live abroad, for the first two weeks after being told the news because the hole in their baby's heart might have closed naturally. He then wished he had told them earlier because they were reassuring and supportive.

Another couple did not tell anyone about their son's heart murmur until he needed heart surgery when he was three and a half years old. Surgery might not have been necessary and they didn't want their son to be treated any differently.

Parents found it difficult to talk in detail about their child's heart condition because people didn't understand, or it was too technical to explain. One mother recalled that when her hairdresser asked how her baby was, she didn't know what to say, because it was something too emotional to be discussed in a hairdressing salon. 

Another used to tell acquaintances that her baby had 'a problem with his heart, but he's fine' because otherwise she would need to explain it in great detail and several times. As their child got older, parents told others only as they needed to know.

When things are uncertain in the hospital after birth, or a child is suddenly admitted to hospital, parents found it difficult to keep everyone informed and to know what to tell them. One couple explain that when their daughter was taken in for emergency surgery, they let others know by telling one friend who told others and who kept everyone updated on progress.

Last reviewed December 2014.

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