Many within the Down syndrome community have for some time been concerned at the lack of a care pathway for those women expecting a baby with a high chance or confirmed result of having Down syndrome. Positive About Down Syndrome  and the Downs Syndrome Research Foundation UK were invited to collaborate with St George’s University Hospitals, London to create such a document, which we are delighted has today been published.

The pathway is divided into six key areas:

• Antenatal Care – case-loaded by a named midwife or team for continuity of care
• Assessment for Fetal Structural Problems – to allow early care planning
• Assessment of the Risk of Prematurity -detection of polyhydramnios related to duodenal atresia
• Assessment of the Risk of Placental Dysfunction – detection of placental dysfunction will allow monitoring and timely scheduled birth
• Emotional and Psychological Support – use of unbiased language and attitudes and early access to psychological support (both formal and informal)
• Postnatal Considerations – opportunity to meet members of the neonatal team before the birth to discuss the postnatal plan of care

Dr Elizabeth Corcoran of the Foundation advises, “Absence of good practice pathways can mean poor and substandard care can flow into the gap. By leading the way with pathway we hope St George’s will be a beacon of antenatal care of women with pregnancies affected by Down syndrome.”

“We will ensure this pathway is shared to promote good practise and believe it will save lives.”

Nicola Enoch writes, “PADS provides online support to women with a high chance/confirmed result of baby having Down syndrome via DSUK PADS Great Expectations For Pregnant mums expecting LO w Down syndrome and it has concerned us how little support and information there is in some trusts around care of such pregnancies. We will ensure this pathway is shared to promote good practise and believe it will save lives.”

PADS and the Foundation thank St George’s University Hospitals NHS FT for acting upon the community’s concerns that pregnant women were not receiving care guided by the latest evidence or taking into account the poor care experiences.

We would ask that this pathway is shared to reach as many maternity units as possible.

Pathway document available here 

REFERENCES USED IN PATHWAY
1. Muglu J et al. PLoS Med. 2019;16: e1002838.
2. Rasmussen SA et al. J Pediatr. 2006;148:806-812.
3. Skotko BG et al. Am J Med Genet A. 2009; 149:2361-7.
4. Sparks TN et al. Prenatal Diagn. 2016; 36:368-74.
5. Van Riper M and Choi H. Genetics in Medicine 2011; 13: 714 – 716.

Additional references of interest

Ivan, DL & Cromwell P.Clinical practice guidelines for management of children with Down syndrome: Part 1.Journal of Pediatric Health Care 2014; 28(1): 105 – 110.

Skotko BG, Capone GT, Kishnani PS; Down Syndrome Diagnosis Study Group. Postnatal diagnosis of Down syndrome: synthesis of the evidence on how best to deliver the news. Pediatrics. 2009;124(4).

Van Riper, M. A change of plans. American Journal of Nursing 2003; 103: 71 – 74.

Enoch N Sharing the News Report and UK Survey 2019

Phillips, C & Boyd, M. Relationship-based care for newborns with Down syndrome and endocardial cushion defect. Nursing for Women’s Health 2015; 19: 413 – 421.