Read Standard 9: Preconception and pregnancy care

Congenital heart disease (CHD) standards
Healthcare Improvement Scotland

Standard statement

Women/people with CHD who may become pregnant receive preconception care, counselling and specialist antenatal care.

Rationale

Cardiovascular disease is the leading cause of perinatal death in the UK.54 This risk can extend beyond the pregnancy.70 Studies in women from Black and Asian ethnic backgrounds or from lower socioeconomic backgrounds show that they are at higher risk of maternal death, stillbirth and neonatal mortality.70, 71

Women/people with CHD who can become pregnant are more likely to have menstrual cycle disorders72 which can result in infertility or miscarriage.73 Support should be given to people with CHD exploring adoption or infertility treatment.

The World Health Organization has classified people’s health risk during pregnancy. This classification (mWHO) can be used to support NHS boards to develop care pathways and manage risk.53 Pregnant women/people in mWHO risk class II-III, III and IV, should be cared for by a multidisciplinary pregnancy heart team.54 This includes a cardiologist, obstetrician and obstetric anaesthetist. It may also include specialists in genetics or sexual and reproductive health. Obstetric pathways should take account of local, regional, and national expertise and include access to a local congenital cardiac nurse.

Preconception care and counselling supports people to make informed choices about their future. It can improve general pregnancy health and cardiovascular status. Pregnant women/people should be informed about their risk as soon as possible. Planning should consider anticoagulation, medication review, pain relief and anaesthesias.54

People with CHD should be offered information about safe, effective contraception. They should be informed about the risk of cardiovascular disease in their children. This information should be provided by a healthcare professional with knowledge in obstetric cardiology.

Criteria

9.1

NHS boards ensure that women/people with CHD who may become pregnant are routinely provided with:

  • contraceptive advice and preconception care including advice to take folic acid
  • ongoing reassessment if medication is reduced or stopped.
9.2

Staff undertake a person-centred and validated risk assessment of women/people with CHD who may become pregnant, which considers:

  • their cardiovascular status
  • co-morbidities
  • obstetric history
  • social factors that could impact outcomes for them and their baby.
9.3

NHS boards ensure that women/people who may become pregnant are offered preconception counselling as indicated which may include:

  • assessment and counselling by a cardiologist and/or obstetrician with expertise in cardiac obstetric care
  • access to a local congenital cardiac nurse to support the person’s pathway
  • information and counselling on the risk of CHD recurrence and/or inheritance in their baby.
9.4

Women/people who may become pregnant receive as indicated:

  • information on the implications of anticoagulation during pregnancy for them and their baby, in partnership with a haematologist where relevant
  • a plan for anticoagulation, developed in partnership with a haematologist.
9.5

Women/people who may become pregnant have access to advice and information relating to all fertility and contraception options including:

  • emergency and long acting contraception
  • risks associated with medication withdrawal or assessment
  • risk associated with stopping contraception during medication withdrawal or assessment
  • benefits and implications of assisted reproductive technologies
  • processes for adoption and how CHD can influence the outcome
  • supporting the decision not to have a family.
9.6

Women/people who are pregnant are supported as early in pregnancy as possible to make informed choices, including, where appropriate, whether to continue a pregnancy.

9.7

Each NHS board has established referral and escalation pathways that include the national service for people with complex or high risk CHD requiring preconception counselling and pregnancy management.

9.8

Pregnant women/people with complex or high risk CHD, based on mWHO classification:

  • are involved in the development of a joint obstetric and cardiology care plan which includes information on the frequency of assessment and review
  • have access to a multi-disciplinary team including CHD cardiologists, obstetricians and obstetric anaesthetists, relevant to their care plan
  • have access to echocardiography as required.
9.9

Pregnant women/people with CHD have an individual care plan which:

  • is developed jointly with them and where appropriate their family/representatives
  • is reviewed and updated continuously as things change
  • is shared between NHS boards, specialist services and all health professionals involved in ongoing care.
9.10

NHS boards ensure staff:

  • recognise when pregnant women/people with CHD experience a change in cardiovascular status
  • facilitate timely investigations to assess change in cardiac status and prioritise pregnant women/people as appropriate
  • facilitate appropriate assessment, investigation and referral to a consultant obstetrician and/or cardiologist where required
  • support and signpost pregnant women/people with CHD who require psychological support.
9.11

Following pregnancy, women/people with CHD have access to:

  • pre-discharge contraception within the principles of informed choice
  • ongoing cardiology review.

What does this standard mean for...

What does the standard mean for people with CHD?

  • You will be fully informed about what may happen if you become pregnant to support you to make decisions about your future.
  • You will be supported to make the right choice for you.
  • Your risk in pregnancy will be assessed and shared with you.
  • The team that looks after you when you are pregnant will be highly trained and specialist.
  • You will be cared for and monitored throughout your pregnancy.

What does the standard mean for staff?

Staff:

  • work in partnership to keep pregnant women/people with CHD safe
  • provide advice and support to women/people with CHD who may become pregnant
  • know who to go to for specialist advice and when to refer to the national service
  • support people’s choices about their future.

What does the standard mean for the NHS board?

NHS Boards:

  • provide high quality local antenatal and postnatal support for pregnant women/ people with CHD
  • have protocols and referral pathways in place to ensure safe care for pregnant women/people with CHD
  • share information, skills and expertise when needed.

Examples of what meeting this standard might look like

  • Assessment and documentation of risk in line with mWHO guidance.
  • Evidence of multidisciplinary working as a pregnancy heart team, including team meetings and information sharing.
  • Clinical audit and case review.
  • Escalation and risk protocols.