“we always thought we have 2 children, but after having a child
with PCD we decided not to have another child because we did not want to
risk that we would pass the …the faulty genes on again and have
another child with PCD….uhm I think very much …not so much from a
selfish point of view as in we don’t think we’ll be able to cope with
that…uhm….but we felt that it was not fair to risk having another
child and passing on the condition again” (mother 5)
Socially many parents felt their child’s PCD care did not leave any room
for spontaneity or time for themselves. They did not get a break, were
unable to go out much. The PCD care interfered with their ability to see
friends/colleagues/family and PCD limitations had changed family
activities. They no longer had time for hobbies or even time to spend on
their appearance. Although the PCD diagnosis of the child had placed a
strain on many marriages, most couples had been able to work through
this and came out the stronger for it.