ABSTRACT
Twentieth-century Western society ill-prepares its members for the loss of children. Life is for living—death is remote and taboo. Yet some families must face death in not only one, but several, or all of their children. In a very real sense this ‘doomed family’ has to try to make dying a part of living. The major medical advances in the management of families with genetically determined diseases have been detection of the abnormality in the first three months of pregnancy. The hospital-based social worker’s intervention should be early and preferably at the first visit or while investigations are being undertaken as an inpatient. The social worker’s approach is based on the view that just as the family is the unit of living, so it is also the unit of illness, and sometimes of dying. One of the most stressful periods for the afflicted child must be in the initial stages of certain degenerative brain diseases.
