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Section 4 – What is Patau's syndrome and living with Patau's syndrome?

What is Patau's syndrome?

Patau’s syndrome is a genetic condition caused by an extra chromosome 13 in all or some cells. Patau's syndrome is also known as trisomy 13, or T13. A person with Patau’s syndrome has 47 chromosomes instead of the usual 46. The extra chromosome cannot be removed from cells even if Patau’s syndrome is diagnosed before the baby is born.

All women have a chance of having a baby with Patau’s 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.

Around 90%  (9 in 10) of babies with Patau’s syndrome will die before they are born or shortly after birth. Of the babies who survive, about 12% (1 in 8) live past the age of one. Some babies with the less severe types of Patau’s syndrome, such as those with a mosaic chromosomal change, do survive beyond a year and can survive to adulthood, but this is rare.

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

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

Babies born with Patau’s 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 infection (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 Patau’s syndrome will be under the care of a specialist medical team as babies and children with this condition will have complex needs.

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