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INTRODUCTION: Survival and healthcare for patients with congenital heart disease have improved, and the number of pregnancies among women of childbearing age with congenital heart disease has increased. Our aim was to investigate obstetric outcomes in a large retrospective, national registry study of women with congenital heart disease compared to controls.

MATERIAL AND METHODS: The study included women over 18 years of age from the Swedish Registry of Congenital Heart Disease. Each case was matched with 10 controls from Statistics Sweden, based on the mother's birth year and birth county and all were subsequently linked to the Swedish Medical Birth Register. We included 7998 pregnancies in women with congenital heart disease and 84 799 in controls during 1973-2020.

RESULTS: The mean age at delivery for women with congenital heart disease and controls was 28.7 (±5.0) and 28.7 (±5.1) years, respectively. Women with congenital heart disease smoked less, had a shorter gestation and a higher incidence of delivery by Cesarean section compared to controls. The likelihood of Cesarean section was increased in women with congenital heart disease compared to controls: odds ratio 1.45 (95% confidence interval (CI) 1.37-1.54). Compared to controls, women with congenital heart disease had an increased likelihood of giving birth to small-for-gestational-age neonates: odds ratio 1.40 (95% CI 1.23-1.58). The association regarding small-for-gestational-age remained after adjusting for body mass index, age, smoking, comorbid diseases and preeclampsia. Women with congenital heart disease had an increased likelihood of prematurity compared to controls: odds ratio 1.47 (95% CI 1.35-1.59). The likelihood of Cesarean section, small-for-gestational-age neonates and prematurity was higher in women with severe congenital heart disease than mild/moderate congenital heart disease, both compared to controls.

CONCLUSIONS: In this large national case-control study in women with congenital heart disease, we showed an increased likelihood of giving birth prematurely by Cesarean section, and having a small-for-gestational-age neonate compared to matched controls. The likelihood seems even higher in women with severe congenital heart disease. Further research is needed to explore the underlying reasons for the high rates of Cesarean section in women with congenital heart disease.

Background: Sexual health and functioning are significant, yet often overlooked, components of psychosocial well-being of adults with congenital heart disease (ACHD). Prior research reports inconsistent findings, limited data on older adults with CHD, and few studies have compared patients with controls from the general population. This study investigated sexual functioning in middle-aged and elderly ACHD patients and compared it with controls.

Methods: This was a Swedish sub-study of the international APPROACH-IS II project . Patients 40 years or older with moderate or severe CHD were recruited along with controls from the general Swedish population. The design was case control. Erectile dysfunction (ED) in males was assessed using the International Index of Erectile Function. Sexual dysfunction (SD) in females was assessed using the Female Sexual Function Index.

Results: Overall, 146 individuals were included in the study; 90 patients with CHD and 56 controls. Among males, the prevalence of ED was higher in patients (n=57) than in controls (n=37), (21% vs. 2.7%, p=0.01). ED was associated with increasing age (OR=1.11; 95% CI 1.03-1.20). Among females, no difference in the prevalence of SD was observed between patients (n= 33) and controls (n=19) (27% vs. 30%, p=0.76)

Conclusion: Sexual dysfunction was more common in male patients than controls, whereas no differences were observed between female patients and controls. Given that approximately one in five males and one in four females with CHD reported sexual dysfunction, increased empirical and clinical attention is warranted.

More adolescents with congenital heart disease (CHD) are reaching adulthood and reproductive age. They face challenges transitioning from pediatric to adult health care and need to manage their health and developmental goals. The 2030 Agenda emphasizes a holistic approach to sexual and reproductive health rights (SRHR), aiming to provide accessible information to adolescents. Healthcare providers (HCPs) must offer appropriate information about CHD and SRHR issues. This study aimed to describe HCPs' experiences of informing adolescents with heart disease about SRH. An explorative study with a descriptive design using semi-structured interviews. The qualitative content analysis method by Graneheim and Lundman was used to analyze the data. The interviews provided a wealth of data, revealing different opinions and experiences. The analysis resulted in four main categories: (1) organizational culture, (2) health care professionals' perception of adolescents' needs, (3) skills and ability are essential, and (4) parents' influence on conversation

Conclusion: Discussing SRH is universally accepted among HCPs, but prioritization varies. HCPs must customize information, consider the timing and setting of the conversation. Enhanced knowledge and skills in SRH are essential, including strategies to overcome barriers and respectfully involve parents. Crucially, adolescents' rights to SRH information must always be upheld.

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. 

Aims: 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.

Methods and results: 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.

Conclusion: 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.

Aims: With a growing population of women with congenital heart disease (CHD), pregnancies in this group are expected to increase. However, pregnancy in women with CHD is associated with increased adverse outcomes for both mother and child. The aim of this study was to evaluate pregnancy and foetal complications in women with CHD and to test their association with the modified WHO (mWHO) classification.

Methods and results: Using two national registers, the national register for CHD and the Pregnancy Register, primiparous women giving birth between 2014 and 2019 were identified. Women with CHD, n = 829, and women without CHD, n = 4137, were matched by birth year and municipality in a ∼1:5 ratio. The women with CHD were classified according to the mWHO criteria. Caesarean deliveries (25.7 vs. 17.2%, P < 0.001), preterm delivery (10.3 vs. 6.4%, P < 0.001), and preeclampsia (6.2 vs. 4.1%, P = 0.007) were more common in women with CHD compared with controls. Using logistic regression, there was an association between high mWHO class (mWHO III, IV) and caesarean section [odds ratio (OR) 3.4, 95% confidence interval (CI) 1.8–6.7], preterm birth (<37 weeks) (OR 8.3, 95% CI 4.1–17.1), and preeclampsia (OR 3.8, 95% CI 1.5–9.9).

Conclusion: Pregnancy complications are more common in women with CHD. In women with CHD, the mWHO classification is associated with maternal complications and preterm birth. Thus, large national register data corroborate the advice provided in current guidelines, and the mWHO class is deemed a valuable risk stratification tool in women with CHD.

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.

Objective: To investigate the time to first childbirth and to compare the prevalence of assisted reproductive treatment (ART) in women with congenital heart disease (CHD) compared with women without CHD.

Methods: All women in the national register for CHD who had a registered first childbirth in the Swedish Pregnancy Register between 2014 and 2019 were identified. These individuals (cases) were matched by birth year and municipality to women without CHD (controls) in a 1:5 ratio. The time from the 18th birthday to the first childbirth and the prevalence of ART was compared between cases and controls.

Results: 830 first childbirths in cases were identified and compared with 4137 controls. Cases were slightly older at the time for first childbirth (28.9 vs 28.5 years, p=0.04) and ART was more common (6.1% vs 4.0%, p<0.01) compared with controls. There were no differences in ART when stratifying for the complexity of CHD. For all women, higher age was associated with ART treatment (OR 1.24, 95% CI 1.20 to 1.28).

Conclusions: Women with and without CHD who gave birth to a first child did so at similar ages. ART was more common in women with CHD, but disease severity did not influence the need for ART. Age was an important risk factor for ART also in women with CHD and should be considered in consultations with these patients.