Fetal Cardiology Nurse Specialist

  • The nurse’s role in the fetal cardiology clinic

    To offer support and give information and advice on treatment options to families whose baby is suspected of a having a cardiac defect.

    Following diagnosis

    Following the diagnosis of fetal heart disease a thorough explanation of the heart defect is made to the family, along with a description of the anticipated neonatal course, possible surgical interventions and long term prognosis/outlook. Information is given in a clear non-directive manner in a way that is appropriate for the family’s needs/understanding.


    Following diagnosis there are many feelings parents/families may be trying to cope with:

    Shock. It was probably assumed the baby would be healthy.
    Grief. For the loss of the healthy baby they thought they were carrying and for the baby they are now carrying.
    Anxiety. Worrying about what the results mean for the family and the baby.
    Isolation. They may feel as if they are the only people this has ever happened to.
    Guilt. They may wonder if they did something to cause the problem (though this is highly unlikely).Their feelings about the baby may have changed.
    Confusion. They may be finding it difficult to take in the information they have been given about the problem and their options.
    Information, Education and Support

    After giving parents/family information about the cardiac problem:

    Allow parents time for questions, to express grief and to be left alone if desired.
    Give them written information to take away with them, including contact numbers and information about relevant support groups.
    Make appropriate arrangements for follow-up. Some conditions have a lot of information available while with others there is very little known. We would offer referral to fetal medicine unit for consideration of further testing i.e. Amniocentesis or Karyotyping.
    1 baby out of 10 who has a cardiac condition will have problems with other organs or with the genes that are responsible for the development of these organs (chromosomal defects).
    Communicate with local hospital/community teams/GP regarding plans for the remainder of the pregnancy.
    Follow up

    In continuing pregnancies:

    Offer support during every outpatient appointment and offer phone contact/home visits between appointments.
    Check appropriate arrangements have been made for delivery (local or Leeds).
    Offer appointments to see other professionals.
    e.g. Cardiac surgeon and/or cardiac wards.
    Neonatologists and/or neonatal unit.
    Offer to arrange contact with other parents.

    If pregnancy not continuing:

    Referral to community midwife for post delivery care.
    Offer contact pre and post termination and suggest referral for specialist support:
    Hospital psychologists/counsellors.
    ARC (antenatal results and choices). Offer practical advice and individualised support for parents’ pre and post termination.
    Sands. Self-help support group for bereaved parents and their families.

    If opting for comfort care:

    Offer care as for those continuing their pregnancies, (though some women choose not to attend all their appointments/have further scans).
    Offer referral to children’s hospice/ paediatric palliative teams for end of life care and support.
    Offer bereavement follow up.

    Office 0113 3925467 (Mon-Fri 8am-4pm) ccns.lgi@leedsth.nhs.uk