The experience of pregnancy for women with congenital heart disease: a qualitative study of women in Sweden

An increasing number of women with congenital heart disease (CHD) reach childbearing age. These women have a higher occurrence of cardiac events, such as heart failure and arrhythmia, than women without CHD. We aimed to illuminate women’s experiences in connection with pregnancy and how they understand and manage signs and symptoms in relation to their heart defects.

Semi-structured interviews were conducted with 18 women with CHD of varying complexity registered at four tertiary adult CHD centres in Sweden. The interviews were conducted by video call online via Zoom, and 30–60 min in duration. The qualitative content analysis method according to Graneheim and Lundman was used to analyse the recorded interview data.

The analysis revealed one overarching theme, Concerned but feeling safe during pregnancy, which was built up from three themes: Feeling confident, Having concerns and fear, and Understanding bodily changes. These themes emerged from seven subthemes.

Despite concerns, the women in this study reported feeling confident during pregnancy. They needed support throughout their pregnancy to manage the many worries and fear they experienced, both for themselves and for their unborn child. They found it somewhat difficult to interpret symptoms, but with the establishment of regular follow-up, the need for acute and unplanned interventions might decrease since the women could recognize symptoms connected to their CHD and report them earlier. The availability of a multidisciplinary team to provide support to this patient group is therefore of utmost importance.