The journey of pregnancy: a qualitative study on the lived experiences of women with dwarfism

Due to being short, a series of persistent misconceptions, such as being incapable of sexual activity, unsuitable for reproduction, and having a high chance of genetically transmitting dwarfism to offspring, predominantly exist over women with dwarfism. Such distorted dispositions had kept these women either from becoming pregnant or in a state of confusion to bear a child. In addition to being categorized as high-risk women, it is significant to understand their journey from their perspective to bring out more sensible and grounded means in approaching pregnancy. The present study aims to understand the perceived meanings that women with dwarfism ascribe to their journey of pregnancy.

This qualitative investigation used a hermeneutical phenomenological research design. Seven women with dwarfism were recruited through purposive sampling, and face-to-face in-depth interviews were conducted using a semi-structured guide. The data collected were then transcribed and analyzed using Braun and Clarke's six-stage thematic analysis approach.

Four themes emerged from the data: (1) Ambiguity at the preconception phase, (2) Fear associated with childbirth, (3) Pregnancy-related complications, and (4) Psychosocial challenges during pregnancy. Uncertainty around their ability to reproduce, anxiety over the child inheriting dwarfism, and apprehensions about the caregiving burden were the key findings. They longed for supportive care to manage their overall health during the journey of pregnancy.

In the journey to motherhood, women with dwarfism suffer from pre-conception planning, fear associated with childbirth, pregnancy-related complications, and psychosocial challenges during pregnancy. The findings highlight the need for an interdisciplinary approach that focuses on understanding the expectations of women with dwarfism during pregnancy, including support from family, peers, and health practitioners. Engagement with advocacy groups would maximize the chance of meeting women with similar experiences and learning from them the best possible ways to traverse pregnancy gracefully.