Read Standard 5: Fetal diagnosis

Congenital heart disease (CHD) standards
Healthcare Improvement Scotland

Standard statement

NHS boards have processes and pathways in place to support early diagnosis and effective management of fetal CHD.

Rationale

Diagnosing CHD in babies before they are born improves the outcomes for both mothers and babies.51, 52 When CHD is detected during pregnancy, the person and, where appropriate, their partner need to be provided with support throughout.53 Counselling from a qualified person and signposting to other organisations or support groups is good practice.54, 55

Families need to be informed about their child’s prognosis and options before the birth to support effective planning. They should be part of a discussion about the location and mode of delivery. All teams must communicate effectively with one another and the pregnant woman/person and their partner, where appropriate. This may involve obstetrics, neonatology, general paediatrics and paediatric cardiology.

Support and education should be provided for obstetric sonographers who undertake screening. This can increase rate of early detection and accuracy of diagnosis.56 In the event of a diagnosis of fetal CHD, access to prenatal genetic screening should be available.

Criteria

5.1

NHS boards, in collaboration with the national paediatric cardiology service, have agreed protocols for the care and treatment of all pregnant women/people with both standard and elevated likelihood of a baby with CHD. This collaboration should involve:

  • fetal medicine units
  • obstetric units
  • neonatal units
  • paediatric teams.
5.2

All pregnant women/people with a standard likelihood of having a baby with CHD are offered a routine anomaly ultrasound scan between 18 and 21 weeks gestation57 to detect fetal cardiac conditions.

5.3

Pregnant women/people at an increased likelihood of a baby with a fetal cardiac condition, including those with a previous history of fetal CHD have timely access to:

  • a fetal echocardiogram in their local area
  • advanced scanning as required from the national fetal cardiology service
  • prenatal genetic testing as required.58
5.4

NHS boards offer detailed fetal echocardiography when a biological parent has CHD.

5.5

Each NHS board has a designated multidisciplinary team with:

  • relevant expertise to identify fetal conditions
  • access to specialist midwives to provide continuity of care
  • responsibility for timely referral to the national fetal cardiology service.
5.6

NHS boards have processes and protocols in place for prompt online referral to the national fetal cardiology service in all suspected cases of fetal cardiac conditions, both structural and rhythm related.

5.7

Pregnant women/people are referred to the national fetal cardiology service and receive an urgent review within three working days of identification of a baby with suspected or confirmed cardiac condition during a routine ultrasound examination.58

5.8

NHS boards have access to safe and high quality ultrasound equipment.

5.9

NHS boards provide person-centred support to pregnant women/people and, where appropriate, their partners or families, after confirmation of a baby with fetal cardiac condition including:

  • ongoing routine maternity and perinatal care
  • assessment for the need for referral to perinatal mental health, clinical or practitioner psychology or wellbeing support
  • access to specialist nursing or midwifery support
  • signposting to services or support groups
  • signposting to the national CHD nurse specialist service
  • the opportunity for shared decision making
  • information and support about pregnancy options including termination counselling.
  • future care planning including bereavement support if required.
5.10

NHS boards implement the plan agreed between the pregnant woman/person, the national fetal cardiac service and fetal medicine teams regarding the mode and location of delivery.

5.11

NHS boards provide pregnant women/people with babies who have a confirmed fetal cardiac conditions with:

  • access to specialist cardiac support including specialist nursing and fetal cardiology if required
  • information regarding the proposed immediate cardiac management after delivery including prostaglandin infusion, cardiac catheterisation or cardiac surgical intervention
  • referral to paediatric cardiology after delivery, if required, in line with prenatal planning.
5.12

Decisions about palliative care are made locally in conjunction with families/representatives, the national fetal cardiology service, the local neonatal and paediatric teams and palliative care team as appropriate.

5.13

NHS boards ensure relevant staff can access:

  • information and support about how and when to refer to the national fetal cardiology service through the online system
  • protected time for training and professional development to improve early detection of fetal cardiac conditions
  • national teaching and learning including membership of national professional networks
  • training on particular genetic and chromosome conditions
  • ongoing advice, support and feedback from the national fetal cardiology service.
5.14

All NHS boards have access to and use a consistent digital platform to share images, fetal or parental demographics, scan reports and correspondence related to maternity or perinatal care in line with information governance protocols.

5.15

Ultrasound images and imaging studies are captured, stored, permanently archived and accessible on an electronic reporting system in line with local information governance protocols.

What does this standard mean for...

What does the standard mean for pregnant women/people?

  • You will be able to access high quality ultrasound scans in your area to find out as early as possible if your baby has CHD.
  • If your baby might have CHD, you will be able to access specialists as soon as possible.
  • Staff will work with you to design and put in place a plan that is right for you.
  • You will receive the support you need if a scan shows your baby has CHD.
  • You will be looked after during your pregnancy by the right people at the right time.
  • You will work with specialists to plan where and how you will deliver your baby.

What does the standard mean for staff?

Staff:

  • support and provide compassionate care to women/people who have confirmation of fetal CHD
  • continue to provide ongoing routine, person-centred perinatal care
  • work in partnership with the national services to plan for the delivery of babies with suspected or confirmed fetal CHD
  • involve and support pregnant women/people with suspected or confirmed fetal CHD
  • can refer online to the national service when they suspect fetal CHD
  • receive specialist training appropriate to roles and responsibilities to improve detection rates.

What does the standard mean for the NHS boards?

NHS boards:

  • routinely provide high quality ultrasound to support early detection of CHD
  • have referral pathways in place to support early intervention
  • work in partnership with the national service to provide shared care for pregnant women/people with detected fetal CHD
  • share information and images where required in line with established information governance protocols.

Examples of what meeting this standard might look like

  • Detection rates of fetal CHD are improving.
  • Referral pathways to specialist midwifery and obstetric services.
  • Signposting and referral to support services including perinatal mental health and wellbeing services.
  • National clinical audit of CHD screening and fetal diagnosis.
  • Documented referral pathways.
  • Shared care plans including plans for mode and timing of delivery.