Maternity Care

Our aim is to help you build a contemporary understanding of what it means to have Down syndrome today, to challenge the outdated perceptions that can still surround a diagnosis, and to give you easy access to reliable information, training and support.

Join our Healthcare Hub

As a maternity professional, you’re often there for some of the most significant moments in a family’s journey – through screening, at a diagnosis, and in the first hours and days after a baby arrives. The way that news is shared, and the language and attitudes that surround it, can shape how a family feels about their baby for years to come. That puts you in a really valuable position, and we’d love to work alongside you.

We work with midwives, sonographers, screening teams and the wider maternity and neonatal team, so we can support you in caring for birthing women and people through a high chance result, a confirmed diagnosis, and beyond – with up-to-date information and guidance you can trust.

In January 2019 we were proud to launch the Personalised antenatal care of pregnancies suspected or diagnosed with Down syndrome, in collaboration with St George’s University Hospital Trust and Down’s Syndrome Research Foundation. We would encourage all maternity units to adopt this pathway to provide expectant parents with the best care.

Lived experience maternity training

Lucienne is our Training Manager who liaises with Maternity Units to arrange training and provide resources to health care practitioners to ensure they understand the lived experience of having Down syndrome and realise the importance of their language and attitudes when speaking of Down syndrome.

We would be delighted to deliver training to you and can offer a bespoke session to meet your individual needs.

Free online monthly webinars

We offer free informal monthly ‘lunch and learn’ webinars, aimed at supporting and training all healthcare professionals around best practices to improve the maternity experience of parents of a baby with Down syndrome.

Created and delivered by parents, experts in the lived experience of pregnancy and life with a child with Down syndrome, the sessions will provide you with a chance to learn from our experiences, to seek advice, and ask questions.

See upcoming webinars

View past webinars

Sharing the news

In 2019 we published the findings of a survey of 1,410 women who had had a baby with Down syndrome in the preceding 10 years, in our report Sharing the news, the maternity experience of having a baby with Down syndrome. This sadly highlights some of the pressures women are put under around screening and continuing a pregnancy with a baby with Down syndrome. The publication has been published in the BJM and RCM journal.

Sharing the news: the maternity experience

Breastfeeding

We have a Breastfeeding Supporter – Sarah – who has extensive experience and knowledge around breastfeeding.

Sarah hosts online information sessions for professionals on breastfeeding a baby with Down syndrome, which features parents sharing their stories, general information and best practice.

We also offer training sessions, which generally last an hour including time for Q&A at the end.

'Nobody told me the truth about Down syndrome' book

We aim to provide parents with ongoing care and support through their pregnancy and beyond.

We love to share the reality of our everyday lives to give a contemporary understanding of what it can look like to be parent to a child or young person with Down syndrome.

We send out a copy of #NobodyToldMe the truth about Down syndrome to expectant and new parents. We’re happy to provide copies to maternity units. Please get in touch.

PADS Maternity Packs

We are passionate about ensuring expectant and new parents have access to the everyday reality of what it means to have Down syndrome in modern Britain. We have created a Maternity Pack that comprises of posters for wall displays, together with leaflets to pass onto expectant and new parents.

We would love to send to maternity units, doctors’ surgeries and health centres some resources to raise awareness and ensure patients have access to information and support.