Women’s Experiences and Decisions Related to Subsequent Pregnancies after Diagnosis of Peripartum Cardiomyopathy

Special Article - Cardiac Nursing

Austin J Nurs Health Care. 2017; 4(1): 1038.

Women’s Experiences and Decisions Related to Subsequent Pregnancies after Diagnosis of Peripartum Cardiomyopathy

Donnenwirth J¹* and Hess RF²

¹Administration, Aultman College, USA

²Research Department, Research for Health, USA

*Corresponding author: Donnenwirth J, Aultman College, 2600 Sixth St. S.W., Canton, OH, 44710, USA

Received: June 23, 2017; Accepted: July 10, 2017; Published: July 19, 2017


Peripartum Cardiomyopathy (PPCM) is an idiopathic form of dilated cardiomyopathy which presents in a woman, without a pre-existing heart condition, in her last trimester of pregnancy or first five postpartum months. The trauma of this diagnosis is often augmented by a directive to forego future childbearing. Knowledge is lacking about women living with PPCM and their decisions about Subsequent Pregnancies (SSPs). The aim of this qualitative study was to explore the experiences of women living with PPCM and their decisions regarding a SSP.

A modified grounded theory guided the study. A purposive sample of 16 women was recruited using admission data of a hospital in northeast Ohio and from membership in a Facebook PPCM survivor group. Semi-structured interviews were conducted face-to-face and by telephone. Data were analyzed using constant comparison procedures. Four women had an SPP; seven women had none; three were still undecided. The core variable was the risk of relapse into heart failure impacts decisions about future pregnancies. Four major themes were: receiving the ultimatum ‘no more children’, weighing the risks of a SSP, making the decision about a SSP, and experiencing a SSP. Women with PPCM who desire additional children face emotional distress before, during, and after the decision making process because personal wishes and plans conflict with others’ opinions. Nurses may mitigate the trauma by helping the healthcare team plan an appropriate time and way to speak about future childbearing and by providing support and guidance when women are making a decision about a SSP.

Keywords: Decision making; Grounded theory; Heart failure; Peripartum cardiomyopathy; Subsequent pregnancy


EF: Ejection Fraction; IVF: In-Vitro Fertilization; LVEF: Left Ventricular Ejection Fraction; LV: Left Ventricular; PPCM: Peripartum Cardiomyopathy; SD: Standard Deviation; SSP: Subsequent Pregnancy; SSPs: Subsequent Pregnancies


Peripartum Cardiomyopathy (PPCM) is an idiopathic form of dilated cardiomyopathy which presents in a woman, without a pre-existing heart condition, in her last trimester of pregnancy or in the first five months postpartum. It is characterized by heart failure secondary to left ventricular dysfunction [1] with an Ejection Fraction (EF) less than 45% [2]. The incidence of PPCM varies around the world, from 1 in 300 to 1 in 3,000 live births [3-7]. Risk factors include pregnancy over the age of 25, black ethnicity, parity of four or greater, pregnancy- associated hypertension, and multiple gestation pregnancy [4,8].

The aim of our study was to explore experiences of women living with PPCM and their decisions regarding Subsequent Pregnancies (SSPs). Much prior research done on women with PPCM who had a SSP focused on incidence, maternal morbidity and mortality, and birth outcomes [1,3,6,9-12]. SP is associated with a risk of relapse when there is a deterioration of Left Ventricular (LV) function, particularly where the LV dysfunction persists after treatment [9]. Ten to fifty percent of women who have experienced a complete recovery from PPCM relapse into heart failure during or after a SSP [5,11,13]. SSP-related deaths continue to be a grave concern, with a mortality rate reported to be 16% [9].

Research on PPCM and subsequent pregnancies from a woman’s perspective is rare. Many women diagnosed with PPCM desire to have more children [9,14,15]. Hess and Weinland’s [15] analysis of 247 online postings related to PPCM revealed that SSP was the most frequently discussed topic. Some women described getting pregnant again and encouraged others, during support group encounters, to have hope. Some women expressed the pain and sorrow of an unfulfilled longing for more children while others considered the risk of relapse or death too great. Dekker and colleagues [14] analyzed posted narratives of 92 women diagnosed with PPCM active in online support groups. Many of the first time mothers were unhappy with the advice to not get pregnant again. Nine women had SSPs; eight had good outcomes; one relapsed into heart failure but recovered. Many others were still hoping to have another child. Patel et al [12] studied 19 PPCM women in Sweden; nine women (47%) desired more children while ten (53%) believed the risk of relapse was too great. None of these women had yet had a SSP. Chee [16] studied nine women with PPCM in Malaysia; two women who had regained normal LV function got pregnant against advice. One woman’s pregnancy was terminated at seven weeks gestation; the other woman gave birth without complications.


Design and sample criteria

A grounded theory design, with a focus on decision making, guided our study. Ethical approval was granted by the Human Research Review Board of the Aultman Health Foundation, Ohio USA. A purposive sample was recruited using these inclusion criteria: diagnosis of PPCM within the previous five years, ability to read and speak English, and agreeable to a tape-recorded interview.

Recruitment of participants

Since PPCM is a rare condition and recruiting participants is a challenge, two approaches were necessary to obtain an adequate sample size. First, the admission data of a hospital in northeast Ohio was accessed for cases of did not return our phone call; three were interviewed. After receiving ethical approval for a different recruitment tactic, messages with the consent form and interview guide were posted on a Facebook PPCM survivor group. Included on the consent form was a description of the researchers’ expertise, previous research on PPCM, and objectives of this study. Thirtyfour women initially contacted us asking for more details; 19 did not contact us again. Their reasons for non-participation are unknown. Two others were not eligible; 13 were interviewed. Each woman had the opportunity to ask questions before giving oral consent to participation. No participants withdrew from the study once they consented to the interview.

Data collection

The first author conducted 11 interviews and the second author did five. Three interviews took place face- to-face and thirteen were conducted over the telephone. Each interview lasted about 60 minutes. The face-to-face interviews were conducted in a private setting, either at the hospital or the participant’s home. Interview questions were broad and open-ended, such as: Tell me the background of your diagnosis with PPCM; describe being told about future pregnancies; talk to me about your decision about more children. Probing questions were used to delve deeper into participants’ comments. Field notes were made during the interviews. Each interview was transcribed verbatim by a hired transcriptionist. To maintain confidentiality, information that might identify the woman, including names of spouse, children, physicians, hospitals, and cities, was obscured in the transcripts.

Data analysis

Data analysis was done using a modified constant comparison method [17]. Each author individually used the following steps for the first 12 interviews. First each transcript was read while listening to the tape-recorded interview to be immersed in the data. At the next reading, illustrative words and phrases were highlighted with a pen. During the third reading, these key words and phrases were extracted and preliminary themes were developed. When comparing each of our themes we decided that data saturation had not been reached; the narratives were wide ranging and data quality was not rich enough to justify the themes [18]. Therefore four more women were interviewed with probing questions pulled from the original narratives. The previous steps were repeated with all 16 interviews and data saturation was reached. All significant statements related to the topic of SSP were extracted from each interview and the analysis process was repeated. Both authors independently wrote preliminary themes and sub-themes and then refined them together.


Participants’ characteristics

Sixteen women living in the United States were interviewed with a mean age of 35.8 years; the majority were Caucasian, married, had at least a college education, and primiparous at diagnosis. Participants’ demographics are found in Table 1, comparing details at diagnosis and at time of interview. Table 2 details the participants’ cardiac and pregnancy history in relation to their PPCM diagnosis. One woman was diagnosed with PPCM before giving birth. Seven women had symptoms of PPCM before giving birth but were diagnosed after delivery. Eight women became symptomatic and were diagnosed during the postpartum period. Over half of the women were initially diagnosed with PPCM during their first pregnancy. Three women had decided before being diagnosed with PPCM that that pregnancy would be their last one. Seven women took measures to not get pregnant again after the PPCM diagnosis. Four women had a total of seven additional pregnancies. Three women were undecided and still weighing the risks of another pregnancy. Table 3 displays characteristics at diagnosis and summarizes reasons for or against SSPs; contraceptive methods are noted if known.