Welcome to our community. The Foundation knows these can be bewildering times, but you are not alone.
Receiving the news your baby has Down’s syndrome can be a difficult time for a family. Thankfully resources are available to guide and support you on your journey. Offering that important component – hope.
The community you have joined is an exceptional one, call on them for support.
There have been great advancements in education and therapy interventions, but the promise of medical research means the future is brighter than ever for your baby.
“This booklet was hands down the best information source I received in the early days when my daughter was born almost 13 years ago.”
Down syndrome Pregnancy has created books (e.g. Diagnosis to Delivery: A Pregnant Mother’s Guide to Down Syndrome) to offer support to expectant parents who are preparing for the birth of a baby with Down’s syndrome/Trisomy 21. All of their materials offer compassionate, practical, and up-to-date information and have been reviewed by leading medical and Down syndrome experts.
>Positive About Down Syndrome is a website by parents for parents and aims to show the reality of life with DS and offer support through answering your questions and providing up to date information. We invite you to take some time to look through our stories – stories written by parents of and young people with Down syndrome who have discovered that there is much to celebrate. They also have a new book #NobodyToldMe which is a collection of personal experiences written by young people with Down syndrome, their friends and family. #NobodyToldMe challenges outdated perceptions and attitudes towards those with Down syndrome by showing the reality of our lives. There is a secret group on Facebook you may wish to join, exclusively for parents who have received a positive diagnosis or high chance result and are continuing with their pregnancy.
>NEW- We have collaborated with St George’s University Hospitals andPositive About Down Syndrome to create a a care pathway for those women expecting a baby with a high chance or confirmed result of having Down syndrome.
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
We suggest you download the pathway document here and bring it to your appointments as a model of good care for your team.
The Down’s Syndrome Association produce a booklet “Looking Forward to Your Baby” free to download. They offer support to new parents via their helpline on 0333 1212 300 (Monday to Friday 10:00 am – 4:00 pm or by email firstname.lastname@example.org