Supporting families after a diagnosis of Edwards' or Patau's syndrome

Imagine going from being happily pregnant to being told that the baby you are expecting has a rare and life-limiting condition. If your child does beat the odds and survives to be born alive, no-one can tell you with any certainty exactly how they may be affected by the many, sometimes serious, physical and developmental challenges they will likely face. Even worse it cannot be predicted how long your baby will survive after birth.

This is the experience that parents who are expecting a child with Edwards' syndrome (trisomy 18) or Patau's syndrome (trisomy 13) face (Box 1). A diagnosis of trisomy is a turning point for families; their world will never be the same again.

SOFT UK (Support Organisation for Trisomy) was founded in 1991 by two mothers, both of whom had exactly that experience. Their children, one who was diagnosed with Patau's syndrome and survived for 3 months, and one who had Edwards' syndrome and lived until they were 19 years old, were offered very little hope or support.