Highlighting DSUK’s work in maternity care

In a recent Maternity & Midwifery Forum session, Nicola Enoch, founder of Down Syndrome UK, shared her deeply personal journey and insights into supporting families of children with Down syndrome. Her story highlights not only her own challenges but also the broader issues faced by many families.

Nicola’s journey began when she was pregnant with her son, Tom, and faced a potential prenatal diagnosis of Down syndrome. She vividly recounted the fear, isolation, and lack of meaningful support she encountered. Determined to change the narrative and improve the experience for others, she founded local and national support networks, including Positive About Down Syndrome and Down Syndrome UK.

Key themes from Nicola’s talk include:

• Challenging negative language and attitudes: Nicola emphasised how terms like “risk”, “abnormality”, and “disorder” can negatively affect families and perpetuate outdated stereotypes. Instead, she advocated for respectful, person-first language and the use of “difference” over “disorder”.

• Promoting informed decision-making: Many parents receive inadequate information and support at the time of diagnosis. Nicola shared survey findings showing that a majority of women were not provided with meaningful support during this critical time, and some felt pressured to terminate their pregnancies.

• Providing ongoing support and education: Down Syndrome UK offers training for healthcare professionals, information-sharing sessions for parents, and comprehensive support services, including peer networks and publications like the Nobody Told Me book. They also collaborate with universities and healthcare providers to improve awareness and care.

• Advocating for respectful care: Nicola stressed the importance of recognising each child as an individual, moving beyond stereotypes, and fostering high expectations for children with Down syndrome. Her message underlined the need for compassionate, respectful communication from healthcare providers.

Nicola concluded by encouraging healthcare professionals to access Down Syndrome UK’s training resources, join webinars, and become advocates for respectful, informed care. She also highlighted the charity’s collaborative efforts with the Royal College of Midwives to develop educational modules aimed at improving care for families.

Her heartfelt presentation serves as a powerful reminder of the importance of language, compassion, and support in maternity and midwifery care for families navigating a Down syndrome diagnosis.

You can watch the full video below.