Fetal Cardiology Nurse Specialist

  • The nurse’s role in the fetal cardiology clinic

    When you come to the appointment for your fetal echocardiogram there may be a fetal cardiology nurse specialist present.

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

  • Following diagnosis

    Following the diagnosis of a heart condition we can provide you with a thorough explanation of the heart defect, 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 to your needs.

    Your feelings

    Following diagnosis there are many feelings you may be trying to cope with:

    • Shock. It is likely you assumed your baby would be healthy.
    • Grief. For the loss of the healthy baby you thought you were carrying and for the baby you are now carrying.
    • Anxiety. Worrying what the results mean to your family and the baby.
    • Isolation. You may feel you are the only person this has ever happened to.
    • Guilt. You may wonder if you did something to cause the problem (though this is highly unlikely). Your feelings about the baby may have changed.
    • Confusion. You may be finding it difficult to take in the information you have been given about the problem and options.

    Information, Education and Support

    After providing you with information about the cardiac problem:
    • We will allow time for questions, to express grief and to be left alone if desired.
    • We will provide you with written information to take away with you, including contact numbers and information about relevant support groups. Some conditions have a lot of information available whilst with others there is very little known.

    The team will make appropriate arrangements for follow-up. If appropriate, this will include a referral to the fetal medicine unit for consideration of further testing i.e. amniocentesis or karyotyping or for further scans as 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). We will also communicate with your local hospital/community teams/GP regarding plans for the remainder of the pregnancy.

    Continuing with your pregnancy:

    • We offer support during every fetal cardiology outpatient appointment and offer phone contact between appointments.
    • We check appropriate arrangements have been made for delivery (in your local hospital or in Leeds).
    • We can also offer appointments to see other professionals.
    e.g. Cardiac surgeon and/or cardiac wards, Neonatologists and/or neonatal unit, Geneticists, Psychologists/counsellors
    • We can arrange contact with other parents who have been in a similar situation to yourself. .

    If you chose not to continue with your pregnancy:

    We can offer contact pre and post termination and referral for specialist support:
    • Our psychologists/counsellors work with our team.
    • ARC (antenatal results and choices) who offer practical advice and individualised support for parents pre and post termination.
    • Sands, a self-help support group for bereaved parents and their families.

    We will also speak to your community midwife so they can give you post delivery care.

    If you are opting for comfort care:

    • We will continue to support you during your pregnancy and if you wish, can refer you to children’s hospice/ paediatric palliative teams for end of life care and support.
    • We offer bereavement follow up.

    Contact details

    Office – 0113 3925467 (Mon-Fri 8am-4pm)
    Email – ccns.lgi@nhs.net