When I learned about my son’s Down syndrome diagnosis while 12 weeks pregnant, I was in shock—scared, frozen, and completely overwhelmed.
After the call with the geneticist, the first person I had to tell was my partner.
I wasn’t even afraid of the conversation. I was crying so hard that fear didn’t really exist yet.
We already knew there was a risk of a Down syndrome diagnosis, but knowing there is a risk and actually receiving the diagnosis are two very different things.
I called him and said:
“It’s a boy. And he has Down syndrome.”
My partner was incredibly supportive. He said right away:
A child is a child. We’ll manage.
Those words mattered more than he probably knows.
Telling the Closest Family
The next question was: how do we tell his parents? We were living in their house at the time.
About a week after receiving the diagnosis, my partner and I went downstairs together and told them that we were expecting another baby (our daughter was one and a half at the time), and that he had Down syndrome.
There was definitely some initial shock.
But they didn’t say much—just the same thing again: a child is a child.
Thankfully, they were supportive.
Living under the same roof would have been very hard otherwise.
What About Our Daughter?
We never had a separate “diagnosis talk” with our daughter.
She is now four years old—extremely smart and observant—so I’m sure she has heard us talk about it and understands in her own way.
At the time of the diagnosis, she was only one and a half. There was no point in explaining anything. We told her she was getting a little brother, and she was happy then—and still is.
She adores him and takes care of him in her own way.
When Support Turns Into Harm
The hardest part was telling other people.
First, a midwife read my file in the health portal and said:
“What are you thinking, keeping this baby? No medical professional will understand this decision.”
That moment created shock, anger, and deep distrust toward medical professionals—feelings I still carry today.
I immediately changed midwives, and everything was fine after that.
But the damage was already done.
The Village Reactions
We live in the countryside. We told people in the village.
Many said things like:
“I would never have that child.”
Some said we were brave and that we would manage.
But there were far too many negative comments.
Why?
Most of them knew nothing about Down syndrome—no more than I did early in pregnancy.
If I wanted my child at 7 weeks pregnant, I wanted him just as much at 12 weeks. The diagnosis didn’t change that.
Because of this, I don’t really want to socialize with village people anymore.
And Now Everyone Loves Him
Now my son is everyone’s favorite.
People come up to cuddle him, admire him, smile at him.
It’s lovely to see—but at the same time, something aches inside me.
I want to ask:
Where was the empathy when I was pregnant?
Do you remember what you said back then?
I’m sure most of them don’t.
Talking Publicly and the Media
Another big question:
Should you post publicly about your child’s diagnosis?
Should you speak to the media?
There is no single right answer.
Definitely not in the beginning—when you’re still in shock.
That decision should come later, if at all.
Our son is now two years old. We agreed to go to the media when he was 1 year and 10 months old. We had been asked much earlier, but I declined because my third pregnancy had just begun.
We discussed it with my partner for two months.
We knew there would be hateful comments online and misunderstanding—again.
So why did we still say yes?
Because even if some people say hurtful things, our story might help someone else.
It might be comforting, educational, or simply show another perspective. And later, we found out that it truly did help several people.
We also wanted to challenge society’s assumptions.
Our son is doing very well. His only real challenges are slower development and hearing loss in one ear. Otherwise, he is an active, capable, joyful, and determined little boy. His life is not a tragedy—and it was important to show that.
Not everyone is ready for this, and that’s completely okay.
I decided not to read any comments.
My partner did. He said there were many hurtful ones.
You also never know what kind of journalist you’ll get—someone who tries to understand, or someone who judges.
We were lucky. Both the article and the radio show were done with warmth, respect, and a positive tone.
That’s exactly what we need more of in the media:
less fear-driven cruelty and more understanding when it comes to Down syndrome.
Maybe even a medical professional will learn that support matters more than judgment.
What I Would Recommend
Right after receiving the diagnosis—when you are still in shock—tell only the people closest to you. At that stage, you don’t need strangers’ opinions.
Later, when the shock has settled and you feel emotionally stronger, you can decide for yourself how open you want to be, or whether you want to speak publicly at all. Some people choose to share their story widely; others don’t. Both are valid choices.
What I wasn’t prepared for was how unfiltered some reactions could be. I had assumed people would be kind—or at least neutral—because that is how I would respond myself. I didn’t expect how hurtful some comments could be.
Because of that, my advice is simple: you don’t have to talk about the diagnosis much. You don’t even have to mention it—especially not to random people. Protect yourself first.
For me, writing anonymously became a way to cope. Living in the countryside with very little social life, and parenting around the clock, I don’t have the energy to constantly explain myself. Writing helps me process my thoughts and connect with people who truly understand.
Finding Real Support
One of the best decisions I made was contacting the Down syndrome association.
The head of the association told me:
You’re getting the most wonderful little sunshine.
And she was right.
She sent me a book and a gift, and connected me with other parents. I spoke with eight women whose children had the same diagnosis.
That support meant everything.
I saw children who were wanted, loved, and well cared for—completely opposite to the stereotypes and fears society projects.
They know best, because they live with this diagnosis every single day.
Sometimes I think I could become a peer counselor myself.
And I would say this first:
Congratulations. You are getting the most beautiful little sunshine.
You are not alone in this.
If you would like to go deeper into our family’s story and the realities behind a prenatal diagnosis, you can buy my e-book
Our Journey – A Different Path, which shares honest reflections and lived experience beyond this post:
https://payhip.com/b/c9s3b
You can also purchase supportive routine templates designed to help parents and children navigate daily life with more clarity, structure, and understanding—especially when life feels overwhelming:
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