15 The lived maternity experience of having a baby with Down syndrome

May 5, 2023 @ 12:00 – 12:50 UTC Timezone
Room C

Speaker: Nicola Enoch

Facilitator: Adebukunola Olajumoke Afolabi 

Down Syndrome UK is a charity fully immersed in supporting expectant and new parents of babies with Down syndrome.  We are passionate about ensuring parents have access to contemporary information about the reality of living with Down syndrome and relevant compassionate ongoing support.

We have been conducting research since 2018 in order that the findings of the research can translate into effective inclusive practice to improve outcomes for patients.  

We are currently undertaking collaborative research with University of Warwick as a follow up to the report Sharing the news: the maternity experience of having a baby with Down syndrome. and will share preliminary findings. 

Our previous report published the findings of a survey of 1,410 women which sadly highlighted systemic discrimination towards those with Down syndrome.  It revealed an assumption by medical professionals that an expectant woman will terminate when discovering their baby has Down syndrome. It also highlights the pressure put on women to undergo further tests in addition to a lack of information and of support.  We have also undertaken research and will share findings around breastfeeding babies with Down syndrome.

As experts by experience, we are passionate about sharing the findings of our research with the aim to empower all by promoting best practice ensuring the voices of parents are heard to improve the maternity experiences of future parents.

Recording: https://youtu.be/jTZ4QaPeS38