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Background: Most people with congenital heart disease (CHD) now reach adulthood, and many wish to become parents. However, many in this group struggle with health challenges and are at risk for complications related to their heart disease early in life. What parenthood means for adults with CHD is still an unexplored area. Objectives: Describe experiences of being a parent with CHD.

Methods: Ten semi-structured interviews with six women and four men were conducted using an inductive approach. Inclusion criteria: (i) visiting a CHD clinic at least once after age 18 and (ii) having biological children. Data were analysed with qualitative content analysis, from a manifest level to deeper latent interpretation.

Results: The results comprised three themes. The complex emotional landscape of parenthood covered how heart disease became a tangible concern after becoming a parent, making life feel fragile. Strategies for navigating life as a parent illustrated how participants dealt with parenthood by adapting to their limitations and accepting their present and future. Sharing eases life’s challenges described the participants’ need to be met as whole persons facing both physical and emotional challenges.

Conclusion: The heart disease became visible in the daily lives of parents with CHD, both as a tangible reminder and in a physical sense. Healthcare professionals should address physical and emotional challenges, as parenthood can heighten awareness of personal vulnerability. The study, underlines the need for inquire about support and counselling needs, as parenthood for adults with CHD can add an extra dimension to life’s challenges. 

Background: The number of pregnant women with congenital heart disease (CHD) is rising, and the disease poses increased risks of cardiovascular and obstetric complications during pregnancy, potentially impacting breastfeeding success. This study aimed to investigate breastfeeding in primiparous women with CHD compared to primiparous women without CHD, and to examine potential hindering factors for breastfeeding in women with CHD.

Methods: The data were gathered between 2014 and 2019 and obtained by merging the Swedish Congenital Heart Disease Register (SWEDCON) with the Swedish Pregnancy Register. Primiparous women ≥ 18 years of age with CHD (n = 578) were matched by age and municipality to 3049 women without CHD, giving birth after 22 gestational weeks. Multivariable logistic regression analysis was used to identify factors associated with non-breastfeeding in women with CHD.

Results: Fewer women with CHD breastfed than women without CHD two days (94% vs. 97%, p = 0.001) and four weeks after birth (84% vs. 89%, p = 0.006). When all women were analysed, having CHD was associated with non-breastfeeding at both two days and four weeks after birth. For women with CHD, body mass index (BMI) ≥ 30 (OR 3.1; 95% CI 1.4, 7.3), preterm birth (OR 6.4; 95% CI 2.1, 19.0), self-reported history of psychiatric illness (OR 2.4; 95% CI 1.2, 5.1), small for gestational age (OR 4.2; 95% CI 1.4, 12.2), and New York Heart Association Stages of Heart Failure class II − III (OR 6.0; 95% CI 1.4, 26.7) were associated with non-breastfeeding two days after birth. Four weeks after birth, factors associated with non-breastfeeding were BMI ≥ 30 (OR 4.3; 95% CI 2.1, 9.0), self-reported history of psychiatric illness (OR 2.2; 95% CI 1.2, 4.2), and preterm birth (OR 8.9; 95% CI 2.8, 27.9).

Conclusions: The study shows that most women with CHD breastfeed, however, at a slightly lower proportion compared to women without CHD. In addition, factors related to the heart disease were not associated with non-breastfeeding four weeks after birth. Since preterm birth, BMI ≥ 30, and psychiatric illness are associated with non-breastfeeding, healthcare professionals should provide greater support to women with CHD having these conditions.

Background: Poor maternal self-rated health in healthy women is associated with adverse neonatal outcomes, but knowledge about self-rated health in pregnant women with congenital heart disease (CHD) is sparse. This study, therefore, investigated self-rated health before, during, and after pregnancy in women with CHD and factors associated with poor self-rated health.

Methods: The Swedish national registers for CHD and pregnancy were merged and searched for primiparous women with data on self-rated health; 600 primiparous women with CHD and 3062 women in matched controls. Analysis was performed using descriptive statistics, chi-square test and logistic regression.

Results: Women with CHD equally often rated their health as poor as the controls before (15.5% vs. 15.8%, p = .88), during (29.8% vs. 26.8% p = .13), and after pregnancy (18.8% vs. 17.6% p = .46). None of the factors related to heart disease were associated with poor self-rated health. Instead, factors associated with poor self-rated health during pregnancy in women with CHD were ≤12 years of education (OR 1.7, 95%CI 1.2–2.4) and self-reported history of psychiatric illness (OR 12.6, 95%CI 1.4–3.4). After pregnancy, solely self-reported history of psychiatric illness (OR 5.2, 95%CI 1.1–3.0) was associated with poor self-rated health.

Conclusion: Women with CHD reported poor self-rated health comparable to controls before, during, and after pregnancy, and factors related to heart disease were not associated with poor self-rated health. Knowledge about self-rated health may guide professionals in reproductive counselling for women with CHD. Further research is required on how pregnancy affects self-rated health for the group in a long-term perspective.

Background: As more women with congenital heart disease (CHD) are reaching childbearing age, it becomes more common for their symptoms to be evaluated during pregnancy. However, pregnancy-related symptoms are similar to those caused by heart disease. This study investigated the prevalence of factors associated with symptoms during pregnancy in women with CHD.

Methods: The national birth register was searched for primiparous women with CHD who were registered in the national quality register for patients with CHD.

Results: Symptoms during the third trimester were reported in 104 of 465 evaluated women. The most common symptom was palpitations followed by dyspnea. Factors associated with symptoms were tested in a univariable model; higher NYHA classification (>1) (OR 11.3, 95%CI 5.5–23.2), low physical activity (≤3 h/week) (OR 2.1 95%CI 1.3–3.6) and educational level ≤ 12 years (OR 1.9 95%CI 1.2–3.0) were associated with having symptoms. In multivariable analysis, low physical activity level (OR 2.4 95%CI 1.2–5.0) and higher NYHA class (OR 11.3 95%CI 5.0–25.6) remained associated with symptoms during pregnancy. There were no cases with new onset of impaired systemic ventricular function during pregnancy.

Conclusion: Symptoms during pregnancy are common in women with CHD but are often already present before pregnancy. Because ordinary symptoms during pregnancy often overlap with symptoms of heart disease, it is important to know if symptoms were present before pregnancy and if they became worse during pregnancy. These results should be included in pre-pregnancy counselling and considered in the monitoring during pregnancy.