Down Syndrome: Mom shocked by how others react to baby’s diagnosis

Australian mum of two, Stephanie Rodden changes the narrative around babies born with Down syndrome. Here is her story, told to Erin Huckle.

“You have a decision to make. “

The unexpected words come out of our doctor’s mouth and echo in his office.

I’m sitting next to my husband Ben, and we’re here for our 12 week pregnancy checkup. A routine check, at least I thought so.

He spoke the words in a way that seemed heavy. It’s like he’s placed something heavy on our knees, and I’m trying to read his face. What the hell is he talking about?

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There was never a decision for Stéphanie. She always wanted Lincoln. Source: Marc Lenzo.

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“What are you talking about?”

“Ah, so you don’t know? Your baby has a high risk of Down’s syndrome. This is Down syndrome.

At that point everything stopped for me, but my mind was going 100 miles an hour. I was trying to piece together what I knew about Down syndrome, if I knew anyone with Down syndrome …

“We will reserve you for an amnio.” “

His words are starting to make sense now. We have a decision to make. But it is a decision that I have already made.

“No I said.” It doesn’t happen. “

At this point, we already had a beautiful son, and we had been trying to have another child for a few years and had chosen the route of IVF. We were beside ourselves with the joy of knowing that our family of three would soon be a family of four.

The doctor assumed we would have thought it might be a possibility. We hadn’t.

All I wanted at that point was to be connected to other families who had a child with Down syndrome.

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Down Syndrome: Mom shocked by how others react to baby's diagnosis

Lincoln is now a busy preschooler. Source: Stéphanie Rodden Photography.

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We had no information and no support

We left the doctor’s office, shaken by the unexpected news and unsure of where to turn for help and advice. Without any information or ideas on how to deal with or find help. Although I was sure to keep my baby, I knew very little about Down’s syndrome and what life could be like with my new baby.

After making it clear to our doctors that yes we would keep our baby, and no we would not have the high risk amniocentesis test to further confirm the diagnosis, the next few months have been a lonely and confusing time. I am so grateful to my husband Ben for always being on the same page with me. There was no doubt that we would keep our baby.

Not only did I struggle to find other families to connect with or get professional advice on the realities of life with Down syndrome, I also struggled with the feedback we had. at the news of our unborn baby. People have repeatedly questioned my decision to keep the baby and told me that I doom myself to a life of high level care and disappointment. Even members of our immediate family tried to convince me to change my mind and end their activities.

Down Syndrome: Mom shocked by how others react to baby's diagnosis

It was hard for Stéphanie without support. Source: Marc Lenzo.

“It was really a difficult time”

It was a really tough time, and I was on a constant emotional roller coaster. All I wanted was for people to feel happy for me and my baby, and to love us both unconditionally. You can’t help but feel a sense of hopelessness and not being able to get a real idea of ​​what life might be like as a parent was really difficult.

Of course, there were a few additional considerations – at 19 weeks we learned he had a very large hole in his heart, which would require surgery shortly after birth if he could even survive the pregnancy. .

In March 2017, our beautiful baby boy Lincoln was born. In our eyes, he was perfect and we were overwhelmed by our love for him. His older brother was equally in love.

Four years later, Lincoln is now a very busy preschooler who enjoys taking music lessons, reading books, singing, and swimming, all while annoying his older brother. Before her first birthday, I had an idea. As a professional photographer, I had taken countless photos of Lincoln, as I had done with my oldest son. And these photos were the best way I know of to truly celebrate the magic that Lincoln had brought into our lives.

Down Syndrome: Mom shocked by how others react to baby's diagnosis

Take a copy of Celebrate T21. Source: Stéphanie Rodden Photography.

Celebrate T21 is born

I had also had time to reflect on our experience. The isolation we had felt. The support we couldn’t find. Fear of the unknown, as we try to find families we can talk to and ask questions about what parenting a child with Down syndrome might really be like.

Thus, Celebrate T21 was born. Our first project, in 2018, was to produce a beautiful photo book featuring amazing families from all over Australia who were part of the T21 Mum network. I had been connected with them shortly after Lincoln was born. It was a great online support network for moms with children with Down’s syndrome.

From there, we evolved into creating our own online family support group and helping new families access the wonderful selection of networks available to them. Our networks support each other, share stories and advice. Many families have since told me that they either received their own diagnosis in the form of an “I’m sorry” or that they said to end. We need to change that.

Raising a child with Down’s syndrome can be difficult

It’s not just rainbows and lollipops. But don’t all children come with their own unique set of joys and challenges? Our mission now is to help every family diagnosed with Down’s syndrome feel supported and get a feel for what it’s like to have a child or family member with T21.

We’ve just launched our latest photo book, featuring over 180 Australian families, as well as some amazing inspirational people – people with Down syndrome who have been successful in fields as diverse as modeling, cake decorating, sport and art.

These Celebrate T21 books and gift sets are provided to families at the time of their diagnosis – whether prenatal or postnatal diagnosis. We dream of a world where no family feels without support or pressure to interrupt their baby.

And our mission is to rewrite the narrative around Down syndrome. Helping people find the right words, removing the outdated stigma surrounding Down’s syndrome (T21), helping healthcare professionals make a balanced diagnosis, and reminding us all that a new baby should always be celebrated, not compassionate. So the first word new parents hear is always “congratulations”.

For more information, visit the Celebrate T21 website.

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