Parents of children with congenital heart disease

When a child is diagnosed with a congenital heart defect, the whole family is affected. Here, parents explain what they told their other children, how they reacted and the impact they felt it had on them. The parents we interviewed did not think there were any long-term problems with their other children although we know that in some families having a disabled or sick child can sometimes make other children feel neglected and less important.

Parents explained to their younger children in simple language and told older children in more detail. A few had used reading materials designed to help siblings understand what was happening to their sister or brother; most had been helped.

Many parents tried to involve their children in what was happening to their sibling by taking them to hospital appointments or to paediatric intensive care. Some worried about their children's reactions, but were relieved that they had coped much better than expected.

Many were amazed at how well their children coped with seeing their sibling in intensive care. One mother describes how her son liked going to the hospital with her for his brother's appointments because there was a playroom with lots of toys and the nurses made a fuss of him.

When the family live far away from the Children's Heart Hospital, some parents could take their children to stay with them at the hospital. Others arranged for relatives to look after their children. One mother explains how her children, who had never been to a hospital before, felt a bit left out and didn't really understand where their parents had gone.

Informing siblings of what is happening and giving them support can be more difficult when things are uncertain, for example, if children stay in hospital longer than expected, or before diagnosis, if they are admitted to hospital suddenly with symptoms.

Parents recognised a temporary impact on their other children but saw no long term ill effects, even when their sibling's illnesses and treatment continued. Sometimes siblings felt left out because of disruption to normal family life, parents being away from home and spending more time with their ill sibling.

Some children became very protective, worried, or sad about their brother or sister. One toddler was concerned that something would go wrong with his own heart. But over time parents recalled that their children had reverted to treating their brother or sister normally. One couple commented that their six-year-old daughter worried that her sister was going to die and that every trip to hospital for checkups or for minor illnesses was seen as something more serious, but this had got better with time. Another couple said that a few weeks after his sister's operation, their son had been anxious that his mother wasn't going to be coming back when she left him at nursery or other places, but after she reassured him this passed.

One mother explains that her daughter when she was older had to do a poster at school of major events in their life, and one of the events she had chosen was when her sister was taken to hospital to get an ECG in the middle of the night.

Sometimes younger siblings wanted attention too. One father describes how his toddler wanted to be seen by the doctors for imaginary illnesses. A couple recalled that their toddler complained of tummy aches every night after her brother had been in hospital. Another mother had to give his twin brother fake medicine because he felt left out.

Several parents said it had been difficult to leave their other children when they were staying in hospital with their sick child and had found it hard trying to divide their support and time between their children. Some tried to keep family life at home as normal as possible for their other children while their child was in hospital. Parents had taken it in turns to spend time with both children, used extended family support or had done something special with their other children to let them know they weren't forgotten.

In two cases, children had witnessed a sibling collapse due to their heart condition and their parents in a panic. At such times the help of other family members had been invaluable for talking to and supporting siblings, while their parents were tied up looking after their sick child. Neither parent felt that these incidents had had any lasting effect on their children.

Support from grandparents or other family members for siblings at times of crisis or during operations was very important in enabling children and their parents to cope. Support from the school and the hospital was also invaluable. Support groups can also support siblings. One mother explains that her son had benefited from going on outings and meeting other children who had brothers or sisters with a heart condition.

 

Last reviewed July 2018.