The reaction of parents, the attitude of health professionals, the child’s own environment – playmates, educators and others – all will play a crucial role on the child’s quality of life, on the child’s psychological and physical development.
Three factors explain the behaviour of the child:
the nature of the heart disease;
the age at which it appeared;
the current age of the child.
During the main stages of a child’s development, their character traits start to show. Dependency, aggression, depression, absence and even regression of psychological development are observed to varying degrees. For parents, the birth of a child with congenital heart disease instinctively means the loss of a normal child, a loss they must fully acknowledge before accepting the different child. Parents frequently experience feelings of helplessness and anger. They may be tempted to blame someone or something, to look for a cause they cannot find. They also often mistakenly feel guilt for a situation for which they are not responsible. Very varied attitudes stem from these difficulties, overprotection being the most frequent. It sometimes results in an exaggerated control which deprives the child of their natural initiative and slows down their psychological development.
Sooner or later, the child comes into contact with others: playmates, teachers, hospital staff. All these stakeholders can contribute to modifying, for better or for worse, the behaviours that the child will have acquired in contact with their parents. They will definitely influence their entire future life, as well as their social integration. Environmental reactions go from one extreme to the other. At school, for example, the child is either asked to follow others in all physical activities although unable to do so, or the child is instead put aside. The child then risks being singled out.
We believe that we should be optimistic in such a case. First, when behavioural changes do occur, they are usually mild. In addition, early surgical cure of the defect allows the child to enjoy a normal life in most cases. However, there is still a lot of work to be done, especially in improving the support to be given to parents from the moment they learn of their child’s anomaly.
By providing information to parents, En Cœur helps them to take stock of the specific needs of their child. A well-informed parent will be able to deal with their fears constructively and rationally.
