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.
Read on to hear Holly’s story in her own words…
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 (there were lots and lots of tears), 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.
Naturally, I had my own questions to explore, yet none seemed to be anticipated or proactively discussed by health professionals. It was distressing that, on more than one occasion, they assumed termination was the expected course of action—solely based on my unborn baby’s chance of T21. It made me feel as though having a child with a potential learning disability was not something to celebrate, as if I were making the ‘wrong’ choice.
In reality, I was looking to the future of parenting. I wanted to know more about Trisomy 21, I wanted to understand what community support was available and what educational support looked like. This led to an emotion-fuelled ‘google search’ of understanding family life with Trisomy 21.
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Fortunately, after navigating negative and outdated information of T21, I discovered the amazing community of Down Syndrome UK and PADS.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. This is why I am committed to making sure such support is readily available in my local area for expectant parents.
Reflecting on my pregnancy journey this time compared to my eldest son’s, it felt much more fast-paced. I lost count of the number of appointments I attended right up until the day I delivered at 33 weeks. With each appointment bringing new health information, I was often left feeling exhausted. It was like the whole experience lacked the positive energy I had experienced with a typically developing pregnancy. However, what really made a difference was being able to ‘listen’ to other parents’ journeys and reflect on their lived experiences. It gave me hope and a sense of calm. I will be forever grateful to Nicola Enoch (CEO) for founding PADS. Without it, many families, including mine, would have had a very different journey.
It was another 11 medically complex and intense weeks after our son’s birth before we could finally bring him home and begin life as a family of four. The immense sense of quiet I felt being at home was really when I was able to begin connecting with others in the PADS community.
There really is nothing quite like the support of a community made up of parents with lived experience. Parents celebrating each other’s success and appreciating the small moments, both peer and professional support with multiple key learning and rich resources to promote education and awareness.
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! So, with the health appointments starting to fall into place, I wanted to explore the options to take him swimming.
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.
At the time of our registration Theodore was still receiving oxygen and oral feeding by NG tube, so I wanted to ensure this was something Water Babies would be willing to accommodate. I needn’t have been worried, as a compassionate and inclusive phone call with the team and Simon, who is the franchisee for Water Babies Kent, ensured they understood Theodore’s needs. They even brought a dry bag for his oxygen! I felt so excited to be able to get in the hydro pool and let him feel the freedom of the water.
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. Nicola is always listening and observing each child to ensure every step is tailored and adapted to their capacity that day. It’s certainly not a one-size-fits-all class! It’s amazing to see his confidence and physical strength develop in the water.
Follow Theodore’s Journey!
You can follow our journey of advocacy at @t_adventures_24
Find Support
If you’re looking for support on your own journey, Down Syndrome UK and the Positive About Down Syndrome (PADS) community offer invaluable resources, guidance, and a network of families who truly understand. You are not alone. ??
And if you’re thinking about introducing your little one to the water, Water Babies provides inclusive, supportive swimming lessons where every child can flourish and build confidence. Find a class near you and take the plunge! ??
