Table 5.

Quotes describing parental uncertainty about infant prognosis

24 h EEG group	“[we] had no idea what to expect” “[TH] either worked or it didn’t” “We had no answers so I think that’s the hardest part and then waiting the 3 days until cooling’s over to really get any answers.”
72 h EEG group	“it was very reassuring when she [doctor] told us that if he hadn’t had any seizure like activity, that within a certain amount of time, that the chances of him having a seizure now were… extremely slim.” “if it were some of the problems [on EEG] we’re looking for, you’d see different patterns going on. She [doctor] called it the inchworm pattern [sleep wake cycling]… because [it was] good to know that at least there were no alarming problems … not to feel worried; just wait for that MRI to at least confirm it.”
Longer-term concerns	“we were wondering if she was ever going to speak when she was cold” “we have to watch out for things now like he could have a seizure at any moment and we won’t know.” “okay, yes, his MRI was pristine, but I mean, is he going to be autistic?”