Parents of children with congenital heart disease

How it affects parents

When they learned the diagnosis, parents felt shocked and devastated to discover that their child had congenital heart disease (see 'Parent's reactions'). During the following months, parents were on an emotional roller-coaster, with down days and good days and sometimes found it hard to cope. 

Some mothers felt very low and depressed. One mother describes how different it had been to having a healthy baby. Another said she had difficulty coping and just wished the responsibility could be taken away from her. A couple of mothers said that at one stage, they couldn't face being left at home on their own with the baby.

One mum for several months couldn't face seeing her friend who had a baby the same time as her. Another said she was on antidepressants for 2 years after her son was born. The National Childbirth Trust provides support for mothers with post-natal depression. Some fathers coped by trying to forget about their child's illness and spent more hours at work. One mother said her husband withdrew into himself for a long time.

The impact of having a baby who was ill, facing the possibility that he might die, or seeing him in a paediatric intensive care unit, didn't hit some parents until later. Some found it hard at first to accept that there was something wrong with their child. A few said they still hadn't come to terms with it.

As time went by, several felt that having passed through the emotional roller-coaster they were better able to accept and cope with their child's diagnosis. In some cases it wasn't until after their child had major surgery, and health had improved, that feelings of depression lifted. One mother said that she had been depressed for nearly 6 years, but when her son's health improved after his pacemaker operation she felt more positive.

Another recalled that after her son had his first SVT (supraventricular tachycardia) episode she felt better able to cope because until then the threat of an attack had always been looming over her. One mother said that two years after her son's diagnosis she felt that what her family had gone through had enriched their lives, and they were much stronger and happier.

Having a child with congenital heart disease had had an impact on parent's decisions to have another child, their relationship as a couple and their daily life (see 'How it affects relationships' and 'How it affects daily life'). 

Some parents, who had hoped to have more children, felt apprehensive about having another child. They were worried that it might happen again and didn't think they could cope a second time. In fact the risk of having another child with congenital heart disease is relatively low. In some cases the disease has a genetic cause, and genetic counselling is available, but in most cases the cause is unknown.

A few parents had another child quite soon after their CHD baby and all were healthy. One mother explains that becoming pregnant again had helped her through the difficult first year after her daughter's diagnosis. One couple said they had been able to enjoy having a newborn baby, which had not been possible with their CHD baby because they had been so stressed and worried.

Mothers had a specialist scan during pregnancy and one couple had genetic counselling before trying for another child. Most mothers described feeling anxious during their subsequent pregnancy and wary after birth. Babies had had checks at the specialist hospital after birth.

One mother, whose baby died from congenital heart disease when he was four and a half months old said they waited a year and had genetic counselling, arranged through their GP, before they tried for another child. They needed a lot of reassurance during pregnancy and after birth. She describes her feelings during pregnancy and after birth.

Many parents felt that their outlook on life had changed. One mother said her priorities had changed, she was no longer as ambitious in her career and appreciated things a lot more. Another thought she had become more relaxed about minor illnesses having realised how resilient her baby was.

One couple mentioned that they had become stronger and had learned to be more assertive in fighting for everything their child was entitled to. A father said that he was now confident that his family could face any problem and cope. It had changed his perspective on life and he now had a more philosophical attitude. Another couple said they had become less sociable and enjoyed spending more time at home.

Some parents wanted to 'give something back' and had become involved in raising money for heart research or for the specialist hospital. One father said that raising funds for charity had helped him to feel that he was doing something beneficial during the months when he felt unable to contribute to his daughter's care.

Last reviewed July 2018.

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Last updated April 2010.


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