Table 3 Parent quotes pertaining to the psychosocial impact of receiving a genetic diagnosis.
Quote 3.1 | “At the first it’s really going to be a hard pill to swallow, but then once you’ve digested it and can empower yourself with the knowledge, I think that outweighs the negative of you’ve just robbed me of my dream of this child.” (Mother…clinical referral) |
Quote 3.2 | “…inside I felt like I failed [redacted] in a way because I hadn’t done anything for her. I could have done something earlier for her, or I could have done something before getting pregnant.” (Mother…NBS) |
Quote 3.3 | “We were lost in trying to identify those symptoms instead of enjoying the moment that we would ideally have with that little one.” (Father…NBS) |
Quote 3.4 | “[My partner] and I handled it very differently… There were some very tense times where I think we weren’t each other’s person anymore, that we were dealing with it so differently.” (Mother…NBS) |
Quote 3.5 | “The benefit of getting that diagnosis earlier, I think would ultimately outweigh, I guess, the impact of finding that information out, because, with a condition like [my child’s], if she’s on the inside deteriorating every day, then every day you wait to treat her is a bad thing.” (Mother…clinical referral) |
