What does this mean for my baby's future?

KS/XXY is not life-threatening and is not an illness.

Many boys with KS/XXY are not diagnosed until puberty or adulthood or may never be diagnosed at all. This is because symptoms may be mild or can be hard to detect, but this is different for every boy with KS/XXY.

At birth:
Many babies with KS/XXY do not show any signs of the condition from birth although boys with KS/XXY have an increased chance of undescended testicles as babies. They may also be ‘floppy babies’.

Early childhood:
Early childhood is an important time for children where they constantly absorb new information to learn about their environment and themselves. Giving your son awareness of KS/XXY from an early age when he is ready can help to build the foundations of his understanding, and open up honest communication and support between you and your child. Describing to him that he has a few extra instructions inside his body can be a good place to start.

Some boys with KS/XXY can have problems with learning and development. More specifically, boys can have difficulty learning to talk and may need more time but services such as speech therapy can help children with this. There can also be problems with learning to sit up, crawl and walk, for which a physiotherapist may be helpful.