“It’s horrible, it’s the worst time…I used to think it was
hard when (child) ended up in hospital and at the time that was like the
end of the world. You know, we had one child and that child was in
hospital and you worried about that child and it was just awful. But
actually, now having 2 with it and one without – having 3 children,
what actually now has materialised is hideous, as a mother having to
pick between your children, having to choose between them.” (Mother 3)
Impact child’s health status on parent
In general, parents did not anticipate their child being born with
health problems when they decided to start a family. Now that they were
living with a child with a long-term health condition, they sometimes
wished the child did not have PCD, were wondering why this happened to
them or wished that there was a cure. Emotionally, the worries about PCD
never left some parents. For some parents PCD worries were in the back
of their mind surfacing as soon as the child was feeling unwell, the
child needed to visit a doctor or therapist, or they received PCD
related correspondence. Parents wanted their child to live as normal a
life as possible as explained by the following mother: