Parents of children with congenital heart disease

The operation

“In 2010/11 around 1,900 surgical procedures were performed on infants (31 days to 1 year) and around 1,800 on children aged 1 to 16 years. Around 80% of those were bypass procedures.” (Children and young people statistics 2013 -British Heart Foundation Health Promotion Research Group.)

When it is known that a child will need an operation, the family is offered a pre-admission visit to the hospital to meet the staff and become familiar with the environment. One mother describes the benefits of the pre-admission day and of visiting paediatric intensive care before their daughter went into hospital.

With a planned operation, the child is often admitted to the hospital on the day before or spends the day in the outpatients department having tests.. One couple remembered that day, when they were kept busy with meeting the anesthetist, the surgeon, the nurses and other members of the team.

Parents who visited the intensive care ward before their child's operation said this made the shock of seeing their child in intensive care easier to deal with. One couple who preferred not to see the ward beforehand were shown pictures instead. 

Before surgery, children need various blood tests. A few parents and their children had found this distressing. One couple always asked for their son to be sedated first.

Various other tests such as nasal and mouth swabs to test for infection, an ECG and chest x-ray may be done before the operation.

On the morning of the operation, children are not allowed to eat anything. One mother said it had been difficult waiting for the operation time and coping with a fretful, hungry baby. 

Parents must consent to surgery and intervention procedures before their child's operation. Before having to sign, parents should be told by a senior member of the team of the potential complications and risks of the surgery and also the risks of not having the operation. One mother describes her feelings about consenting to their daughter's operation. Another couple describe being told the risks of their son's operation before signing the consent form. Although legally parents have to be informed of the risks of their child's operation, a few parents said that this information had frightened them and they would have preferred not to have known.

On the day of the operation both parents are able to go to the anaesthetic room with their child. Handing their child over to the anesthetist was traumatic for some parents. Sometimes this role was taken by one parent when the other found it too upsetting. One father said he found taking his daughter to the anesthetists room rewarding because he was able to meet the surgeon and anaesthetist again.

When a child is older and more aware of what is happening it can be even harder for parents. One mother describes taking their toddler to the anaesthetic room for her operation and how they made it a less traumatic experience for her.

During their child's operation, parents should be given a pager so that they can be contacted if they want to leave the hospital. Parents stayed in the parent accommodation, went to the chapel to pray, went shopping, or for a walk or visited a museum.

One couple had found it useful to have some time away from the hospital with their other child. Another mother had found it a distraction to go clothes shopping. Many could not concentrate and just waited for the time to go by. One couple whose child's operation had previously been cancelled describe their relief that the operation was finally happening and would soon be over.

Sometimes operations take longer than expected. One couple advises other parents to be prepared for this. How long the operation takes depends on the type of surgery and whether complications occur. One couple describe their experience of their son's cardiac catheterisation. A mother of a child with pulmonary stenosis describes their experience of the balloon catheter operation.

The hospital informed parents when the operation was over and the surgeon talked to them about the outcome of their child's operation. They were asked to wait in a room outside intensive care for about half an hour to an hour while their child was prepared, and the various drips, drains and tubes were attached but after this they could be with their child as much as they liked.

Children's heart surgeryin the UK has recently been reviewed. Children and parents may have to travel further because of a concentration of expertise into a smaller number of centres (see NHS specialist services).

For information on national survival rates of congenital heart disease operations see Central Cardiac Audit Database.

Last reviewed March 2015.

Last updated March 2015.

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