Women's Experiences Being Diagnosed With Peripartum Cardiomyopathy: A Qualitative Study

Introduction: Cardiovascular disease has been identified as the leading cause of maternal mortality in the United States, with cardiomyopathy, including peripartum cardiomyopathy (PPCM), accounting for 12% to 16% of all pregnancy-related deaths. The purpose of this study was to describe women's experiences being diagnosed with PPCM. Methods: This investigation was conducted using a qualitative design. We collected publicly available narratives posted by 92 women with PPCM (mean [SD] age 29 [6] years, mean [SD] ejection fraction 25.5 [10.8]%) in 3 online support groups. Data were coded and thematically organized so as to produce a richly detailed account of this experience. Results: The experience of diagnosis was marked by the women's distinct memories of their initial symptoms and whether they were dismissed or taken seriously. The most commonly reported symptoms were extreme shortness of breath, orthopnea, tachycardia, palpitations, chest pain, cough, and edema. Nearly 40% of women experienced symptom dismissal by health care providers. One-fourth of women were initially given inaccurate diagnoses ranging from “new mom anxiety” to asthma. Women described their initial reaction to diagnosis as feeling terrified, devastated, and feeling a sense of doom. Women had difficulty caring for their newborns during the postpartum period, and they struggled with the medical advice they received to not get pregnant again. Discussion: Despite experiencing severe subjective and objective symptoms, nearly 40% of women with PPCM experienced symptom dismissal by health care providers, in part due to the overlap between normal symptoms of pregnancy or the postpartum period and symptoms of heart failure.