celebrate t21 on world down syndrome day
For many families expecting a new baby, a diagnosis of Down syndrome – also known as Trisomy 21 (T21) – causes shock, concern and confusion. One Wollongong mum, Stephanie Rodden, is changing its perception through her organisation Celebrate T21 which supports families, raises awareness and celebrates children with Down syndrome.
Words Erin Huckle
Imagine this. You’re 12 weeks pregnant, and feeling all the warm and fuzzy feelings a wanted pregnancy brings. You’re already full of hopes and dreams for your unborn child, as you imagine their gender, their looks, their personality, their quirks. Boy or girl? Dark or fair? Noisy or shy?
You have your first screening test and excitedly squeeze your partner’s hand as you see the baby's heartbeat on the screen. But in your follow-up appointment, the doctor doesn’t look joyful. They tell you with concern, your baby has a high chance of being born with Down syndrome, also known as T21 (Trisomy 21).
For Wollongong mum Stephanie Rodden, the experience of being told her unborn baby had a high chance of Down syndrome came as a complete shock and was incredibly isolating due to negativity and lack of support:
“I remember feeling completely disconnected when we were told our baby had a 1 in 4 chance of being born with Down syndrome. My head was spinning, trying to figure out what I knew about Down syndrome, I kept on looking over to my husband as the doctor was rattling off a list of challenges of raising a child with T21 and telling me I needed to book-in for an amniocentesis to confirm the diagnosis, which I refused.
“I immediately knew I wanted to keep our baby and just wanted to be connected and supported by other families at that point. However, support to interactive networks like the T21 Mum Australia Network or 321 Pregnancy Group wasn't offered and needs to be made more available by the medical profession,” she says.
“You’re presented with the medical facts about the condition, and when to terminate the pregnancy, brochures from Down Syndrome NSW (if you request them) but you aren’t given anything which provides you with an insight to the families who have lived experiences of what it’s like to raise a child with T21 or how to connect with those families.
“Even our friends and loved ones weren’t sure how to react when we told them we were proceeding with the pregnancy - most people’s first reaction was an apology. There’s so much out of date information and miscommunication out there - we really need to break the stigma associated with Down syndrome.”
The rate of Australian babies born with Down syndrome is around 1 in 1,100. This is lower than the worldwide average of 1 in 700, due to high termination rates in Australia. The rate of termination is 9 in 10.
“At present, the majority of families report that when given a diagnosis of Down syndrome the information delivered is heavily tainted with negativity, and typically followed by repeated offers to terminate, even after the family has stated they’re continuing with the pregnancy,” says Stephanie.
Stephanie’s gorgeous son Lincoln is now three years old, and he has brought immeasurable love and joy to her family. Stephanie’s experiences while pregnant with Lincoln motivated her to set-up Celebrate T21 - providing families around Australia with support when they’re given a diagnosis of Down syndrome either during pregnancy or after birth.
“I was the 1 in 10 who chose the unknown,” says Stephanie of her choice not to terminate. “At Celebrate T21 we dream of a world where no family should feel isolated, unsupported or pressured to terminate based on a Down syndrome diagnosis. Of course, every family has to make their own choice, and raising a child with additional needs comes with a unique set of challenges, but this can be said for any child!”
Celebrate T21 created a photo book in 2018 with the generosity of 58 photographers Australia wide, which shares heartfelt quotes from 113 families around Australia touched by Down syndrome. This book and a special package of goodies are gifted to newly diagnosed families, to celebrate the arrival of their bundle of joy, give them hope and connect them with support with the T21 networks.
Local mum Kylie Cullen was grateful to Stephanie and Celebrate T21 for their support when her son Luca was born:
“Celebrate T21 played an important role in our family while Luca was in the NICU at Wollongong Hospital. The amazing nursing staff presented us with the Celebrate T21 book to keep by Luca’s cot and show our family and friends. In the same week, Stephanie from Celebrate T21 came to the NICU and presented us with a gift pack including the book. This pack and Stephanie’s advice and support meant the world. To connect with people that have been through it and are still going through it is very comforting, knowing you aren’t alone,” Kylie says.
A photoshoot featuring a range of gorgeous models with T21 and their families recently took place in Wollongong, showcasing the World Down Syndrome Day t-shirts designed by a fellow mum of a child with T21 Alexis of Alexis Schnitger Design and photographed by Ann Young Photography. Along with a ‘Vanity Fair’ styled shoot photographed by Stephanie who is also a photographer.
The new t-shirts are a fundraiser for a new Celebrate T21 book showcasing Australian families with a Down syndrome diagnosis, after they also successfully produced a book for UK charity ‘Wouldn’t Change a Thing’.
“Celebrate T21 would love to create a 2020 version of the book this year that is completely funded by the community. Our aim is to continue to gift our books not only to the families but to hospitals, GP surgeries and schools in order to educate and assist in building and fostering an inclusive community,” says Stephanie.
“Down syndrome is not a tragedy. Running out of bacon is. Also ignorance. But mostly the bacon thing.” – Alexis Schnitger Design for Celebrate T21, World Down Syndrome Day t-shirt.
Find out more about Celebrate T21 by visiting their Facebook page and check out the new t-shirts at www.celebratet21.com
“Down syndrome is not a tragedy. Running out of bacon is. Also ignorance. But mostly the bacon thing”