From diagnosis to accompanying in mourning : support for families with a child with a lethal defect

This article characterizes the interactions and institutions in which parents can receive support after their child has been diagnosed with a lethal defect. First of all, parents need information and emotional support when making decisions regarding their child. The primary source is the hospital staff and the perinatal hospice – if the parents decide to contact them. If the child is born alive and discharged home parents need support during its treatment (which often means palliative care) and rehabilitation, even social rehabilitation. Home-based hospices for children have a lot to offer in this area. At every stage of the child’s illness it is important to contact other parents of children with a lethal defect. They can help to eliminate the feeling of isolation, give practical advice regarding the situation and, above all, provide hope that some children live despite fatal diagnosis.