Cambridgeshire is the first of the “… more than medical” regional booklets.
“… more than medical” is a UK wide project and new regions will be added as their booklets are completed.
“… more than medical” is a resource designed to complement the medical information currently distributed, and complete the information available to parents considering genetic testing options during pregnancy, and for those receiving a pre or postnatal confirmed diagnosis of Down’s syndrome for their baby.
This resource takes the form of an attractive informative booklet that discusses very personal thoughts and feelings from families at the point of diagnosis, the assumptions initially made and the realities of everyday life, along with the challenges they face, any medical conditions or issues their child has or had and includes some highlights and family life.
These are the very honest experiences of families who have a baby, child or adult with Down’s syndrome today. These are not rose tinted stories from individuals with a pro-life agenda. These shared experiences are the realities and are being made available to ensure complete and balanced information is provided to all parents either making very personal and difficult choices about their pregnancy or beginning life with their new baby.
Booklets are being created on a regional basis throughout the UK and each include the experiences contributed by local families along with the contact details for the respective region support groups making further information and support accessible for parents.
Our first regional booklet is now available for Cambridgeshire and has been endorsed by the Down’s Syndrome Association.
“… more than medical” is a collaborative project of Lose the Label CIC and Rebekah Docherty, Project Lead and parent to Meadow 11 and Piper 5.
Whilst pregnant with her second child, who was diagnosed with Down’s syndrome at 17 weeks gestation, Rebekah was provided with and was able to obtain an abundance of medical information about the condition; but nothing that gave an insight into what life is really like for children with Down’s syndrome and their families.
The complimentary distribution of “… more than medical” together with the medical information currently provided to parents considering genetic testing options or receiving a pre or postnatal diagnosis of Down’s syndrome for their baby acts as a resource for medical staff and ensures every parent has the opportunity for fully informed choices.