New pathway created for women with pregnancies affected by Down Syndrome

By Nicola Enoch, Positive about Down syndrome on 15 February 2021 Maternity Safety Maternity Services Wellbeing Of Women

Positive about Down syndrome (PADS) works with maternity units by providing information and support to new and expectant parents of a baby with Down syndrome.  We understand how these parents crave an understanding into the lived experience of having a baby with Down syndrome in modern Britain. 

A collaboration between PADS, the Down Syndrome Research Foundation (DSRF) and St George’s University Hospitals NHS FT, has created a Pathway based on the latest evidence and taking into account poor care experiences. 

Founder Nicola Enoch advises, ‘Through our online support group Great Expectations, we are in daily contact with expectant women across the UK.  It has become apparent how little support and information there is in many trusts, around the care of such pregnancies.  We have sadly seen too many losses and much fear and worry experienced by women who are not being fully supported.  We are extremely appreciative to St George's University Hospitals NHS FT and believe this Pathway will save lives.’

The Pathway highlights the additional midwifery, medical and psychological support recommended to deliver personalised medical care and includes:

  • The need for care to at least follow the nulliparous pathway
  • The increased chance of prematurity with c20% delivering prior to 37 weeks
  • The increased risk of placental dysfunction
  • The requirement for extra monitoring and planning to avoid stillbirth
  • The excess risk of stillbirth with expectant management beyond 39 weeks
  • The need for unbiased language and attitudes from medical practitioners
  • Discussion of postnatal care and considerations

Dr Elizabeth Corcoran of the DSRF advises, 'Absence of good practice pathways can mean poor and substandard care can flow into the gap. By leading the way we hope the Pathway will be a beacon of antenatal care for women with pregnancies affected by Down syndrome.'

We thank the RCM for disseminating the Pathway in order to reach as many maternity units as possible.