Heart Education Awareness Resource and Training through eLearning (HEARTe)

Kirsten meets the nurse specialist

Kirsten attends an appointment with the nurse specialist. The nurse gives Kirsten the contact details of the members of the nurse specialist team, before discussing a number of issues with her.

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The nurse specialist also signposts Kirsten to the following support resources:

Kirsten and the nurse specialist discuss other issues including:

Other issues
Contraception and pregnancy: Most patients are able to use any contraceptive method, however, some patients should avoid using contraception that contains oestrogen. Cerezette is a contraceptive pill that is safe for all congenital patients. Implanon is also an effective and safe method for most congenital patients.

Pregnancy carries risks for any woman, however, for patients with CHD, that risk can be increased. This risk will vary depending on the type of lesion the patient has and can be anything from very little risk through to a possible 50% risk of maternal death in some patients who are cyanotic. Pre pregnancy counselling, including updated assessment, is advised prior to the patient becoming pregnant. The highest risk patients are:

  • Patients who have significant pulmonary hypertension (Maternal risk of mortality = 30-40%)
  • Patients with poor systemic ventricular function (Ejection fraction less than 30-40% or NYHA >2)
    • If the patient has peripartum cardiomyopathy the maternal mortality rates range from 6-50%. If the LV has returned to normal after delivery, there is still approximately 30% chance of developing heart failure during future pregnancies
  • Severe obstruction of the left ventricular outflow tract (severe aortic valve or mitral valve stenosis)
  • Fragile / dilated aorta – Marfan syndrome, Turners syndrome, Ehlers-Danlos or Loeys-Dietz, unrepaired or residual CoA

Pregnancy has a significant effect on the cardiovascular system:

  • There is approximately 60% expansion in blood volume and an increase in cardiac output by 30-50% from 6 weeks gestation.
  • It causes a decrease in peripheral and systemic vascular resistance and increases peripheral vasodilation. This includes increasing aortic dilation. There is also an increased risk of thrombotic events and arrhythmias.

Patients with CHD have a higher chance of having a baby with a congenital heart condition, although not necessarily the same condition as the parent. The risk varies depending on the lesion, with recurrence anywhere from 2-50%. The incidence rate increases if it is the mother who has CHD.

See ESC guidelines: Cardiovascular Diseases during Pregnancy (Management of) for more information.
Endocarditis risks: Patients who have a congenital heart condition have an increased, lifelong risk of endocarditis. Patients need to be advised to avoid higher risk behaviours such as piercings and tattoos. Patients need to attend for dental checks at least 6 monthly and maintain good dental hygiene.

ESC: Infective endocarditis (Guidelines on prevention, diagnosis and threatment of), (2015) and NICE: Prophylaxis against infective endocarditis: antimicrobial prophylaxis against infective endocarditis in adults and children undergoing interventional procedures (updated 2016). It is worth noting that the ESC now advocate prophylactic antibiotics for the highest risk patients (patients who have had previous IE; patients who have cyanotic CHD; and patients with prosthetic material in their heart) who are undergoing dental procedures that involve manipulation of the gingival or periapical region of the teeth, or perforation of the oral mucosa. NICE, however, do not advocate prophylactic antibiotics.
Financial:
  • Employment: patients with a diagnosis of CHD may find it difficult to find employment, depending on their heart condition. Some patients will be very restricted due to physical limitations. Patients” choice of career may be affected due to the nature of that job. For example, having a CHD diagnosis may disqualify a patient from a career in the police or armed forces.
  • Insurance: patients with CHD can have difficulty getting life insurance and travel insurance will be at a much higher premium. Patient support websites often provide useful advice with regard to this issue.
Sport and exercise: Advice will vary depending on the patient’s condition and the nature of the exercise itself. ESC: Grown-up congenital heart disease (management of), (2010) provides guidelines for each condition. Most patients can safely carry out cardiovascular exercise, however, in certain cases patients will be advised to avoid isometric activities which cause straining and increases the pressure in their chest (for example, patients with coarctation of aorta, marfans and conditions that involve dilated aortas). Patients who have cyanotic CHD will be much more restricted in terms of their exercise capacity.
Psychological health: Growing up with a congenital heart defect can be very difficult and patients can experience problems such as anxiety and/or depression as a result of their heart defect and its impact on their life. There are several patient support groups that offer help and advice for patients, however, some patients will require referral for professional psychological help.