My doctor told me I had a decision to make.
The book, which includes photographs and stories from more than 180 Australian families with Down syndrome, will be offered to families diagnosed, and also provided to doctors for them to share with parents at the time of diagnosis, as well as in other places. like hospitals and schools.
“We have had so many families who said they received really outdated statistics and facts [at the point of diangosis] then we left to pick up the pieces. “
“The book for us is just to be able to provide families with a balanced view of what it’s like to live with someone with Down syndrome … I don’t have to feel alone.”
Ultimately, it’s about rewriting the Down syndrome story, says Stephanie.
“It changes the narrative around ‘I’m so sorry your kid won’t be able to do this’ or’ we’re going to book you for amnio ‘or go straight to’ do you want to have a termination? “, without offering this opportunity for a more in-depth discussion or to gain insight to be able to talk to other families.”
It’s a book that she says would have made a big difference when she was diagnosed with her son.
“All I wanted was to see faces, quotes from other people and figure things out a little bit more. And when you look at the book you see the journey from pregnancy to adulthood and we see the diversity of different mixes of families and different dynamics between siblings. “
“All of this love is exuded and raw truths from some families, and it’s complemented by beautiful pictures.”
Besides her book, Stephanie said she would like families to have more access to support at the point of diganoiss.
“I think support is what’s really important for parents. It’s hard to take this trip alone and not be connected with Down Syndrome Australia, or Celebrate T21 or one of those key networks.”
In the meantime, Stéphanie has some advice for mothers-to-be who have been diagnosed with Down’s syndrome.
“Take a deep breath and try not to worry because once your baby is in your arms everything else will melt away.”
“This is from my prenatal perspective, but just remember that you are going to have a baby and a baby should always be a ‘congratulations’. What if you are feeling devastated or sad, because you are in shock? of what that means to you, we’re here for you, your Celebrate T21 family is here and we’ll help guide you through the journey. “
To learn more about Stephanie’s book or Celebrate T21, including their national engagement campaign, click here.
Feature image: Fourni / Mamamia.
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