WINNERSH family have shared their story in a book published this month.
The book focuses on the true stories of positive, lived experience typical of the majority of real people with Down Syndrome and their families.
Debbie Taylor-Stewart from Winnersh gave birth to son Noah in August, 2017. After an unexpected delivery at home, the family was transported to Royal Berkshire Hospital, Reading by two teams of paramedics.
A few hours after their arrival, the family received a post-natal diagnosis of Down Syndrome (DS). This was noticed after Noah needed to be urgently taken to the Neonatal Ward due to complications from what was later found out to be a Congenital Heart Defect.
Two years on, the Taylor-Stewart family have taken part in a book has been launched by charity, Wouldn’t Change A Thing and is to support new and expectant parents and maternity units in the UK with Down Syndrome diagnosis.
Debbie said: “We were lucky to have positive and supportive medical professionals who delivered Noah’s diagnosis.
“Unfortunately many other families receiving a DS diagnosis do not have this positive experience.
“Noah spent the following two weeks on Buscot Ward, the Neonatal Ward for babies requiring intensive, high dependency or special care. It was during this time that we started to process what his diagnosis might mean for us as a family,” said Debbie.
“We had discussed the possibility of a DS diagnosis during pregnancy, and for us, a prenatal diagnosis wouldn’t have changed the outcome.
“We were the only family in the ward who had that diagnosis. We wanted to get involved with this book because had it been there in the parents’ room, we wouldn’t have felt so alone.
Debbie explained that lots of the medical literature on Down Syndrome focusses on the negative effects, but this book focuses on the positive stories from real families.
Aged two, Noah is now at nursery and Debbie says that he’s thriving. She added: “Noah’s older brother, Cameron knows that it takes him a little longer to learn things, but other than that, he’s a normal playmate to him.
“The boys absolutely adore each other, their faces light up when they see each other and there is always lots of rough and tumble play.”
The Taylor-Stewart family hope that by taking part in this book project, they can spread a positive view of life with Down Syndrome, which will take away some of the fear of the unknown.
The book was released on Tuesday to coincide with Down Syndrome Awareness Month.
