Skip to main content

Section 3 – What is Edwards' syndrome and living with Edwards' syndrome?


What is Edwards' syndrome?

Edwards’ syndrome is a genetic condition caused by an extra chromosome 18 in all or some cells. Edwards' syndrome is also known as trisomy 18, or T18. A person with Edwards’ syndrome has 47 chromosomes instead of the usual 46. The extra chromosome cannot be removed from cells even if Edwards’ syndrome is diagnosed before the baby is born.

All women have a chance of having a baby with Edwards’ syndrome.

Nothing you or the baby’s father have done or not done can make any difference to this chance.

Antenatal tests will not be able to tell you what specific challenges your baby might have.

Most babies with Edwards’ syndrome will die before they are born or shortly after birth. Of the babies who survive, about 13% (1 in 7) will live for more than a year. Some babies with the less severe types of Edwards’ syndrome (such as those with a mosaic chromosomal change) can survive into early childhood but rarely survive to adulthood.

You can watch some family stories on living with Edwards’ syndrome here. 

All people with Edwards’ syndrome will have severe lifelong learning disabilities.

There are support organisations available for families who have a child with Edwards’ syndrome. These include the Support Organisation for Trisomy 13/18 (Patau’s syndrome and Edwards’ syndrome) (SOFT).

Babies born with Edwards’ syndrome will have a narrow but often serious range of conditions.

  • A significant delay in their development (all babies).
  • Heart conditions (many babies).
  • Feeding difficulties (many babies).
  • Medically fragile, especially with respiratory conditions (most babies, especially when small).
  • Cleft lip and palate (some babies).
  • Prone to conditions such as urinary tract infections (UTIs).

At the other end of the scale, research shows, for example, that:

  • babies and children make progress, however slowly
  • older babies and children show some level of communication
  • some will stand and walk with help, and
  • parents consistently report a high quality of life for their babies and children, because they are involved in family activities.

Babies and children with Edwards’ syndrome will be under the care of a specialist medical team who will be aware of the increased chances of the medical conditions and will do tests to monitor their wellbeing. Some of these conditions can be treated effectively.

Children born with Edwards’ syndrome usually develop and learn more slowly than other children. They have a range of specific challenges. They will need to attend special school.