“when our first born was diagnosed, I mean oh my gosh, it was horrific. I was petrified, I was scared, I didn’t know what was going on, we didn’t have a clue what we were facing, didn’t have a clue what they were testing her for, so it was very much a case of we were scared. Whereas with our current child we knew exactly what they were testing him for, we were 99% sure that he had it (PCD), so actually it was more sadness that our thoughts, our worse fears kind of being confirmed I guess.” (mother 3)
Once the child was diagnosed, most parents felt mixed emotions. They had feelings of relief now having a name for their child’s condition mixed with feelings of sadness because the child had a life-long condition that always needed to be managed.