Despite all the advances made in the medical and social care of individuals with Down's syndrome, many still believe that babies with the syndrome are not fully accepted by their parents and society, and stereotypical perceptions of the condition persist.
The main reason for this lack of acceptance is the predominantly negative nature of the published work on the syndrome; prenatal screening, for example, is offered on the basis of the assumption that parents should be able to choose to prevent the birth of a baby with Down's syndrome. In reality, starting from birth, parents have a key part to play in determining the extent of their child's handicap. Moreover, although people with Down's syndrome share many similarities, each person is unique, and many parents who initially perceive the birth of a baby with Down's syndrome as a tragedy change their opinions greatly over time.
Nancy Roizen and David Patterson1
state that “most of the positive improvements in the quality of life of people with Down's syndrome are the results of parental support”. would like to add that parental support is strongly influenced by the way in which their child's diagnosis is initially conveyed.
Communication of the diagnosis is a delicate task, the importance of which, with respect to parental acceptance, cannot be overemphasised. The diagnosis communication should be adapted to, and modulated by, the characteristics of the individual parent's personality, and to their particular emotional state and family situation.
Health professionals are responsible for reducing the social stigma that surrounds Down's syndrome, hence making the public more accepting.2
Too often parents complain that during the initial communication of diagnosis too much negative information is provided, and that both the communication skills and the basic knowledge of the disorder on the part of the professionals could have been better.3
After communication of diagnosis the support of another family who has been affected by Down's syndrome is often very important; only the parents of children with Down's syndrome are familiar with the day-to-day realities of living with a child with special needs, and with the special contributions that such children can make to their families and to society.