A Day with the Down’s Syndrome Association

I attended a brilliant study day last week that was organised by the Down’s Syndrome Association.

I had heard of the study day on a birthy facebook page and it immediately grabbed my interest. My daughter has Turner’s Syndrome, also a chromosomal variation and finding information and someone to talk to was incredibly hard when we got her diagnosis. She was 7 when we saw a paediatric consultant and she was diagnosed. It was overwhelming. I had so many questions but felt very alone and unable to chat to anyone who had been through anything remotely similar.

I really wanted to have some up to date information to share with any clients that may be in the position where they are thinking about pre natal testing for a baby that may have Down’s Syndrome or have a brand new baby with Down’s Syndrome.

It was held over in Queen Alexandra Hospital Portsmouth. The lovely speaker, Jenny, asked how many of us were consultants, registrars, pediatricians, midwives… every hand shot up at that last one. Apart from mine! I had to timidly call out “I’m a doula”. And then explain what one was. A common occurrence but one i am always happy to share information on!

Jenny went through some attitudes and facts about DS exploring just what it is like for someone living with Down’s Syndrome today. We heard from parents with children that have Down’s Syndrome. Along with local support groups and activities available in my area. The lovely Alice (who has Down’s Syndrome) got up and chatted about her life and what she gets up to. It was great to hear how happy, full of life and confident she is. So brave to stand up in front of us all!

There are around 750 babies born with Down’s Syndrome every year in the UK and more than half of all babies with Down’s Syndrome are born to mothers under 35.

This highlighted the very real need to properly inform all women of the choices available to them in prenatal screening, not just those at a higher chance of having a baby with Down’s Syndrome. There are NICE guidelines here for just that. However women reported that only 22% were given verbal information, 11% written information and 60% no information at all on the screening offered. (Tell it right, start it right campaign)

Women felt that they were not counselled adequately before taking any form of screening. Midwives felt they didn’t have enough time to properly go through the process. Not all women realised the potential outcomes or had adequate understanding of the screening. Something that must change.

It was such an informative day. It left me feeling much more confident in my ability to help support parents with any screening they may choose to have and support them in any way i can as they tread the winding pregnancy, birth and postnatal path.

If you’ve been sent into a spin by test results and would like to talk them through I’m more than happy to support you with making the right decision for your family whatever that may be. As your doula i am here for you at every stage of pregnancy. I can’t think of any other time when women and their families need to be more supported, cared for and informed.

NHS screening tests for you and your baby.

DSA Leaflet for parents- Continuing pregnancy with a diagnosis of Down’s Syndrome.

Down’s Syndrome – New Parent Pack