Severely disabled babies with irreparable problems, need special care and even short lives can be lived in a loving atmosphere. Parents, shocked and grieving, may at first shrink away, needing time and support to decide what to do but in the end, most take their babies home. Very sick infants sometimes need drugs such as analgesics, or have to be fed by tube. Ongoing support is vital, particularly for those who go on to survive for years. When a child's condition deteriorates and is no longer responsive to active therapy, much can still be done.
Palliative drugs can control unpleasant symptoms.
Their use and purpose should be tactfully explained to parents and an interested child. A child's level of understanding will vary with age, intelligence and experience but until insight develops, certain forms of therapy can feel like punishment. To avoid such confusion we need to tune in to the child. A five year old with cancer asked his mother if he was going to die. She said,'Yes, you are poorly and you will die before we do, but it won't be today'.