Ethical approach to a child with an inborn developmental defect and to its parents

Fundamental principles of ethics, which form our ethical views, may, in this area, be confronted with conflicts and dilemmas. The crucial principle is to act always to the benefit of the child and in favour of its parents and the whole family. The Helsinki Declaration of Human Rights expressly emphasizes the rights of the child to the detriment of the society. Regarding the attitude of the parents ethical problems do not arise at the moment of birth of their child. They are the result of their lives, of relations within their families and of their system of values. Therefore it is not a surprise to find that each child is born into specific conditions. The unique quality of each human life is determined not only by genetic, but also by so called epigenetic influences. A handicapped child is born into some specific environment, materially and mentally prepared or unprepared. There exists a whole range of problems which enter the process of confrontation with the new reality in the case of the birth of an afflicted child and the solution of these problems requires time. The paediatrician needs the support and cooperation from other specialists: consultants, social workers, spiritual and ethical advisers, etc. The possible shortage of stimuli (insufficient quality and quantity) could lead to the development of secondary frustrations in the child and in the attending staff, which leads to further errors in the care of the afflicted. Social problems and answers to the questions are determined by such notions as quality and dignity of human life. To come to terms with the situation means first of all to take a stand against claims that an afflicted child is a burden to the family and society, that it has a lower quality of life or that principles of eugenics should be taken into consideration in making decisions, The paper discusses possible ethical attitudes and solutions in detail.