Celebrating World Down Syndrome Day with Holly and Theodore
This World Down Syndrome Day, we’re celebrating with our partners at Down Syndrome UK by sharing the inspiring story of Holly and her little one, Theodore. From the moment she discovered the Positive About Down Syndrome (PADS) community, Holly found a network of support that empowered her through her journey as a mum to a child with Trisomy 21.
A special part of their journey has been learning to swim with Water Babies. Water is a great leveller—a place where everyone can flourish, have fun, and build confidence in a non-competitive environment. For babies and toddlers with disabilities or learning differences, swimming offers a range of benefits. As well as the physical rewards swimming, it also helps improve their confidence, all while creating joyful moments of connection.
Receiving a T21 Diagnosis
Joy, curiosity, and sheer determination are just a few ways I’d describe our youngest son, Theodore. During our 12-week gestation scan, the sonographer observed an increased Nuchal Translucency (NT) measurement in our baby. Following a referral to our local foetal medicine team, we were offered a non-invasive prenatal test (NIPT), which indicated a 1 in 2 chance that our baby had Trisomy 21.
Although the unexpected news brought an abundance of emotions, my instinctive maternal protection arose. Yes, my unborn baby would learn differently from their typically developing peers, and that’s okay. I chose to decline further invasive testing to confirm a diagnosis of T21, as it would not have changed the course of my pregnancy.
Finding Community
Fortunately, after navigating negative and outdated information of T21, I discovered the amazing community of Down Syndrome UK and PADS. I felt privileged to connect with a peer supporter, a mother of a young child with T21 and a similar congenital heart condition. Instantly, I felt comforted and validated.
I’ll always cherish the beautiful congratulations card and the booklet of real-life stories from other families of children with T21 that she sent me—it answered all the questions I had been worrying about. Had this kind of community support been visible to me during the early days following my 12-week scan, I’m confident I wouldn’t have spent so much energy on sadness.
Discovering the Benefits of Swimming
Theodore, our little boy, has overcome critical illness, and remains a tenacious soul who must work incredibly hard discovering his own developmental milestones and navigating the world around him. His prematurity and complicated long NICU stay further impacted significant hypotonia (low muscle tone). However, true to the strength of his character, he mastered the emerging skill of tummy time!
I knew the buoyancy of the water would help develop strength and proprioceptive skills all whilst having fun. So, time to find a swim school! I had always been in awe of underwater photoshoots and watching very young babies learn to swim. A quick search and a call to Water Babies to join the waiting list in our area marked the beginning of something truly special.
Theodore always enjoys his time in the pool. Four months on from his first lesson and having just celebrated his first birthday we are proud to have been selected to be a #WaterBabiesSwimbassador. I would encourage anyone thinking about swimming to make that call. Our Water Babies teacher Nicola welcomed us with open arms, and Theodore watches her with fascination and curiosity every week.
For more information and to follow Theodore’s journey, visit Here
