Living With Known Unknowns: Prognostic Uncertainty in Congenital Cytomegalovirus Following Diagnosis.

OBJECTIVE

To examine how parents experience and navigate prognostic uncertainty following a diagnosis of congenital cytomegalovirus (cCMV) and identify implications for clinical communication and newborn screening.

METHODS

We conducted in-depth qualitative interviews with 41 birth parents of children with cCMV. Interviews explored diagnosis, communication with health care practitioners, health care navigation, and perceptions of child development. Transcripts were analyzed using inductive reflexive thematic analysis.

RESULTS

Prognostic uncertainty emerged as a central and enduring feature of parents' experiences. Five themes characterized how families navigated uncertainty: (1) families live with the burden of an unpredictable future, (2) families struggle to make meaning from incomplete and inconsistent information, (3) families become drivers of the diagnostic journey to gain clarity and control, (4) knowledge provides families direction even when certainty is impossible, and (5) families value early diagnosis because it makes uncertainty more manageable. Uncertainty contributed to anxiety, information seeking, and ongoing monitoring. However, parents consistently valued early diagnosis because it provided direction, facilitated treatment and developmental surveillance, supported access to intervention, and informed decision-making. Rather than eliminating uncertainty, diagnosis transformed an unpredictable future into possibilities on which families could monitor and act.

CONCLUSIONS

Prognostic uncertainty is an inherent and longitudinal feature of cCMV and should be acknowledged in counseling following the diagnosis. Despite persistent uncertainty, parents valued early identification because it provided direction and opportunities for surveillance and intervention. As cCMV screening expands, family-centered communication, anticipatory guidance, care coordination, and longitudinal support can help families navigate uncertainty over time.