A Figtree mother is putting the finishing touches on a book for parents dealing with a diagnosis of Down syndrome.
Stephanie Rodden hopes the book – of beautiful baby photos and heartfelt quotes from families – will help parents look past the diagnosis, and into a future that can be filled with joy.
The photographer, and teacher, draws on her own family’s experience after their son – now 12 months old – was diagnosed with Down syndrome in utero.
She and husband Ben felt health professionals – and even some family and friends – were pressuring them to make the decision to terminate, even though that was a decision that “never crossed our minds”.
“Most people’s immediate reaction when you tell them your unborn baby has been diagnosed with Down syndrome is to say ‘I’m sorry’,” Mrs Rodden said.
“But we’re not sorry – our son Lincoln has brought us so much joy. He’s such a calm, happy little fellow.
“And he’s our little warrior because he’s already been through so much, and has fought so hard, and we’ll continue to be his advocate and fight for him too.”
Talking just prior to World Down Syndrome Day on Wednesday, Mrs Rodden said it was vital that parents were given access to accurate information and pre and post-natal support.
“When we received our diagnosis at 12 weeks, there was no positive feedback, no information to best support my husband and I moving forward in the pregnancy.
“We were only told the worst-case scenarios and while it’s important to be aware of the potential health issues, it’s all too clinical and there’s no pre-natal support at all.”
Pressure to terminate only intensified when the couple found out at 19 weeks that Lincoln had a heart defect – and he endured open-heart surgery at 13 days old and again at nine months.
“They both went really well and there’s every chance he won’t need more surgery,” Mrs Rodden said. “Many of the things we were warned to expect, didn’t happen.
“And while we were also told it would destroy our family, and ruin our older son Nate’s life, it’s actually brought us closer together and made us more tolerant, more patient and loving.”
After Lincoln’s birth, the couple also found the support they’d been searching for – in the form of a Facebook group called the T21 Mum Australia Network. T21 stands for Trisomy 21 – the extra chromosome carried by those with Down syndrome.
“It was amazing to speak to other families, to hear their stories and ask for advice with no judgement.”
Mrs Rodden has worked with the network on the book, and is trying to find a publisher in the hope it can be distributed to GPs, hospitals and other health settings.
