Parents of children with congenital heart disease

For parents of a child with congenital heart disease who may have had major surgery, leaving the safe environment of the hospital can be very frightening. When parents leave hospital with their child it should be made very clear who they should contact if they are concerned about their child's health.

In our experience, parents had been able to telephone the ward or the cardiac liaison nurse at any time for advice about their child's health and could take their child to the ward to be checked over if they were concerned. Many parents had had occasion to telephone the ward and said they had felt very reassured and were never made to feel that they were wasting the doctors' time, which was very important to them.

Children with congenital heart defects are normally followed up for many years in a specialist paediatric cardiology department. The frequency of these outpatient appointments varies according to the child's treatment plan and progress.

Follow-up appointments generally involve a weight and height check, listening to the heart and chest, blood pressure and oxygen saturations check, an ECG and sometimes an echocardiogram. These appointments also offer parents a chance to talk about what is happening with their child, to ask questions and to discuss any particular problems they have experienced.

Parents much appreciated the efforts made by the hospitals to make the clinic a cheerful reassuring place that their child would enjoy visiting. Though most parents returned to the children's heart hospital for their child's follow-up, some families who lived far away were seen at an outreach clinic at their local hospital. One couple who had weekly appointments for three months after their son's operation, could be seen on the ward round on a Sunday rather than in the clinic, because both parents were working.

One child attended monthly follow-up appointments at the pacemaker clinic; her mother describes what this involved. Another mother, whose son has bradycardia, described how for his check-ups he had to have an electro-cardiograph tape fitted to monitor his heartbeat during normal activities at home or at school over a 24-hour period.

The frequency of follow-up appointments varied depending on the child's needs. Some children were being seen regularly to decide the right moment to have a corrective operation. Sometimes check-ups show the need for further treatment or changes to predicted treatment. Children whose condition was more stable might have some appointments with the paediatrician at their local hospital. This had the advantage of ensuring that the local hospital had details of the child's case.

One couple whose toddler has Wolff-Parkinson-White syndrome was seen monthly at both his local hospital and the specialist hospital. A child with pulmonary stenosis had six-monthly check-ups at the specialist hospital for the first 2 years of her life but later needed only 2-yearly follow-up appointments.

One mother who had to travel by plane to the specialist hospital for her child's follow-up appointments always asked to be seen by their own consultant, even though it meant waiting a bit longer, because it meant she went away completely happy.

Parents felt reassured that their child was having regular check-ups though some felt nervous beforehand. Others saw it as a routine appointment and were not too concerned. A few commented that follow-up appointments had got easier as they knew what to expect.

At follow-up appointments parents could also meet or talk to other parents and children with congenital heart defects, which many had found supportive. One couple explain that it helped to see other parents and children at follow-up appointments; a little boy impressed them by proudly showing everybody his scar.

A few parents who had spent a long time in hospital with their child found going back there strange, but felt comfortable because they knew so many people there. Others, whose children were well, said that outpatient appointments reminded them of their child's heart condition and of their painful feelings when their child was having surgery.

Several parents said that their child didn't seem to mind having tests and examinations and they were comfortable in the hospital environment. Others said that occasionally their baby or toddler became a bit clingy at hospital appointments. One couple had found it difficult keeping their baby still for his ECG. Another mother explains that her daughter was happy to be at the hospital for her follow-up appointments but when she was two years old she found it hard to keep still for the echocardiogram. Many tried to make hospital appointments fun for their child (see 'Talking to your child about their heart').

 

Last reviewed July 2018.