Parents of children with congenital heart disease

How it affects daily life

When their child is diagnosed with congenital heart disease, parents may worry about how their daily life will be affected, whether they will be able to go on holidays and how their work will be affected. Here, parents talk about the impact on daily life during their child's early childhood.

All parents said their daily life had changed in some ways, but for several this had only been around the time of their child's operations and they said that life was now normal. One mother said that their 3-year-old's heart condition did not affect their daily life but she did worry about her.

Frequent hospital visits are usual. One couple whose son had four operations in his first ten months of life had not realised how much this would affect their life. They said that had they not been living close to the hospital where their son received treatment, they would have needed to move house.

Frequent hospital appointments can mean time off work. Many employers were very accommodating and had told them to take as much time as they needed after diagnosis, for hospital appointments or during operations. One father had been able to take one month off work when his baby had his operation. However, others said that they had to take holiday or unpaid leave for the times their child was in hospital. One mother had to take holiday leave when her son was having his operation and make up her hours. She advises other parents who have similar problems to get a certificate from their GP.

Some mothers took extended maternity leave or had not planned to return to work after the birth of their child. A few had returned to work. One mother said her career plans had changed (see Interview 04). Another returned to work part time when her son was six months old and explains that it had been good for both of them.

Another mother found people didn't always understand the stress of caring for a sick child 24 hours a day, and describes how the family reacted to her decision to return to work. She encourages other working parents not to think that the only option is to give up work.

Sleepless nights were common. One mother said her daughter's sleeping pattern was disrupted every time she was in hospital and it was difficult to return it to normal. Babies slept in their parents' rooms or parents relied on a baby monitor for longer than they would normally have done.

Social life can be affected. While waiting for surgery, some parents felt they had to stay at home. It could be difficult to find people willing to look after their child, or they preferred not to leave them with others. One couple explain that before their baby had corrective surgery their daily life was more home based, but after surgery it had returned to normal.

Children with heart conditions can have frequent coughs and colds during the winter months, and this can stop parents taking their child out to social events or leaving him with others. One couple went to fewer community events because of their son's susceptibility to infections. A single mother didn't leave her son with anyone for the first two years and they went out less as a family because she didn't want to risk an infection.

Parents had adapted their daily life to their child's heart condition. One couple whose child needed oxygen for the first four months of life insisted on getting small cylinders to use outside the house so that they could go out and about.

Some parents had been on holiday abroad with their child. Others were hoping to when their child's condition allowed it. Travel insurance had not been a big problem - parents found they either had to pay extra to cover their child or look around a bit more for a company that would provide cover.

Dealing with stranger's comments while on holiday had been difficult for a few parents. One couple describes their feelings when people at the swimming pool stared at the scar on their daughter's chest.

Some children's heart conditions had more impact on the family's daily life, and for longer, than others. However several parents stressed that despite these changes they did not hinder them too much and they had a good life. One father said that when they were in hospital they did not believe life would ever be normal, and now it was.

Last reviewed December 2014.

 

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