“So, that then triggered lots of things put in place for as soon as he was born. So we had like heart tests and things like that and obviously one of the things that they tested for, was PCD…..So it was just really quick. Like we were kind of aware that it was something that he might have even before, I think, I don’t know if PCD was mentioned before he was born, but pretty soon afterwards.” (mother 4)
All parents noticed the child’s symptoms at birth, yet only 11 of the 20 children were diagnosed at this time. During the pre-diagnostic period, parents had no knowledge of how to support and care for their child; when reflecting on this, parents recollected their helplessness and emotional distress.