Pregnancy experiences of expectant parents with Neurofibromatosis type 1: a qualitative interview study

Pregnancy in the context of Neurofibromatosis 1 (NF1) may be emotionally complex due to uncertainties surrounding inheritance and the condition's variable presentation. This study aimed to explore how expectant parents with NF1 experience pregnancy and relate to their unborn child. Fourteen participants took part in individual semi-structured interviews, and data were analysed using reflexive thematic analysis. Participants described how decisions around conception and genetic testing were influenced by personal and medical history, perceived severity of NF1, and concerns about potential impact on their child. Participants described how ongoing uncertainty contributed to feelings of anxiety, guilt, and emotional restraint, which they managed through internal strategies such as seeking reassurance, information, and acceptance, as well as through external support networks. Notably, internal representations of the unborn child were sometimes shaped by cautious and emotionally regulated engagement in response to uncertainty. In a condition like NF1, where uncertainty may complicate prenatal bonding, adapting psychological interventions that have been used antenatally to promote early bonding and support later parenting outcomes could help strengthen emotional wellbeing and the developing parent-infant relationship.