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Delivering care to women with congenital heart disease: the role of clinical nurse specialist

02 June 2024
Volume 32 · Issue 6


Congenital heart disease is now the most common reason for women to attend a high-risk joint cardiac–obstetric clinic. With advances in medical care and surgical techniques, most children born with congenital heart disease reach childbearing age and have a good prognosis for long-term survival with a good quality of life. Pregnancy remains a major life event for these women, posing additional risks with the potential for severe morbidity and mortality. The hemodynamic changes induced by pregnancy can unmask undiagnosed congenital heart disease or exacerbate pre-existing conditions. Therefore, specialist care is essential for a successful pregnancy outcome. Women with complex congenital heart disease embarking on pregnancy need the support of a multidisciplinary team, including cardiologists, obstetricians, anaesthetists, midwives and adult congenital heart disease clinical nurse specialists. Clinical nurse specialists in particular play a crucial role in coordinating, supporting, educating and advocating for the mother and fetus through preconception, pregnancy, the puerperium and beyond.

Cardiac disease is the most common cause of indirect maternal death globally (Sanghavi and Rutherford, 2014; Lameijer et al, 2020; Knight et al, 2023). The complex physiological changes induced by pregnancy to meet the metabolic demands of the mother and the growing fetus (Taranikanti, 2018) can precipitate cardiac decompensation in women with pre-existing heart disease, increasing the risk of heart failure and arrhythmia, as well as having a negative impact on maternal and fetal outcomes (Ramage et al, 2019). Pre-pregnancy counselling and close monitoring during pregnancy and the puerperium are critical to the early detection of complications such as heart failure, arrhythmia and thromboembolic events.

In the UK, as in the rest of the world, 1 in 100 babies are born with congenital heart disease (Bakker et al, 2019). At least 97% will survive to adulthood, highlighting the need for long-term management strategies (Mandalenakis et al, 2020). With improved survival, an increasing number of women with congenital heart disease are opting to become pregnant and make up the majority of women seen in cardiac–obstetric clinics (Elkayam et al, 2016; Ramlakhan et al, 2021).

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