Episode 21: Kai and Andrea – life with Trisomy 21

For most parents of children with Down Syndrome, a diagnosis comes while they are still pregnant, or at birth. Down Syndrome is common enough, and recognisable enough, that it very rarely is diagnosed later.

For Andrea and her husband Joe, they were that example of rarity. When their son Kai was born, any questions were brushed aside, and it wasn’t until he was 14 months old that they got a formal diagnosis.

Episode 21 Transcript

This late diagnosis of their healthy baby rocked Andrea and Joe. Getting a diagnosis like this means you have to rethink who your child is and what their future will look like. It’s heartbreaking and confusing, because your child is still your child, nothing has changed except your knowledge of their chromosomes.

In this episode Andrea tells of how she went into “doer” mode in her efforts to come to terms with her son’s new identity and diagnosis, and ensure he was as happy and healthy as possible.