Our Masha

Perinatal diagnostics doesn’t know names, stories, or families. It doesn’t care.

It doesn’t care how long you’ve been waiting for the baby, what name you had chosen, or what clothes you picked out.
It is unmoved by the growing belly, the curiosity of older siblings, or the anticipation of grandparents. It is silent.
We routinely undergo the tests recommended by doctors.
Some numbers come back…
They tell us how “normal” the baby turned out to be.
And suddenly, it turns out the baby isn’t very “normal.”
In our civilized society, it is considered necessary that parents receive this information.
After all, they are the ones making the decisions…
But what decisions exactly?
What decisions do parents make? Or the mother?
In the language of perinatal diagnostics, it sounds like this: to continue or to terminate — meaning the pregnancy.
But it’s “for medical reasons,” of course.
There’s a reason.
Medical indications — from whose side?
The woman’s? Is her health at risk?
The baby’s? No.
The threat is not to life itself, but to the life as imagined — the parents’, the family’s, the child’s.
Prognosis. Again — percentages, numbers, opinions, more tests…
And at this point, I want to ask the respected perinatal community:
Tell me honestly, colleagues — why not just say you don’t know what will happen?
That you’ve seen a number of cases and can share what you know.
Why does everyone feel entitled to predict the future of a particular child or family and declare the only “solution” to be termination?
Even if you haven’t seen positive outcomes — maybe not yet, maybe not in your region, or maybe most of these pregnancies are simply terminated, leaving no opportunity to study the outcomes — just say that! People trust you.
To many parents, it sounds like:
“To kill or not to kill?.. Then — what comes next?.. And if we don’t kill, how do we love THIS?..”
Something unknown.
For an unknown amount of time.
With unknown difficulty.
What should they prepare for?
And this word “love” — it can feel terrifying.
By sugarcoating the tragedy of it all with “medical indications,” for many moms and dads, the essence doesn’t change.
Yes, there is formal approval, permission.
But the internal sense of “rightness” — it’s not there.
They have to sign consent for “this kind of help.”
Doctors present this procedure as the only solution.
Worse — as the only correct solution.
And even worse, when they ask for the decision immediately.

Over time, it may turn out that the decision was formally made by the parents — but not really by them.
The domain of such decisions lies beyond the boundaries of a medical consultation.
This is the role of a perinatal counselor.
A doctor who takes on that role without preparation is like someone performing surgery without a diploma or experience.
This is important to understand.
They also wanted to “treat” Masha this way.
By all the tests, she didn’t meet the standards of a “normal” child.
Moreover, her life was in question at every stage.
From the middle of the pregnancy, her mom and dad were studying numbers, opinions, case studies.
They asked for time to think.
They refused to let fear dictate their decisions.
And fear — fear is contagious.
There’s your own fear, and then there’s someone else’s — like the doctor’s fear.
Because they don’t know what to do with this.
Because it’s hard to talk about.
Because, damn it, it can’t be cured.
It just is.
It was a birth filled with inspiration.
Emotional, vulnerable.
Countless attempts by a heroic mother to walk that path, to go into labor, to open herself to the experience and to her baby, overcoming herself moment by moment…
— Can you take a look at her?
— Of course. She’s beautiful.
What wins — and when — fear or love?
Everything in its own time and place.
This time, love won, blooming and erasing everything else completely.
Because that was what truly mattered.
Because in that moment, it felt right.
Because it was her child, her life, and her family — just the way they are.
Our children.
Masha is endlessly loved by her siblings, grandparents.
Other children ask to hold or touch her, enviously.
There’s so much joy. So much love.
No one knows how long this will last or what Masha’s family’s path will look like.
But what already exists — might never have been.
And that makes it all the more precious, fragile, and warm.
Recently, we spoke with a lab employee.
He confessed a deep sense of guilt and endless regret — that for so long, he’s had to be the trigger…
Starting a cascade of actions where there’s no room for the human being.
Perinatal diagnostics is a soulless machine.
It bends everyone involved: the doctor, the woman, the father, the child, the technician.
It doesn’t care.
But do you?
Masha’s mother:
I had four long months to come to awareness, to have insight.
The diagnosis — trisomy 18 (Edwards syndrome), full form — was given at 25 weeks.
The screening at 12 weeks had been perfect.
A slightly elevated risk of Down syndrome (1:290, with the threshold at 1:300).
For T18, the result was 1:600!
I was confident my baby girl was fine.
We found out the sex at 12 weeks — at the Dravlje center, the ultrasound technician was amazing.
When some abnormalities were detected during the 20-week scan and genetics came up, I opted for amniocentesis.
I wanted to prove everything was okay. So everyone would back off.
The OB at the maternity hospital tried to dissuade me:
“If you're not going to terminate — don’t do it.”
I understood that only later, after the birth.
Because once the diagnosis was confirmed, it was as if the baby stopped existing.
From then on, it was only:
“These children don’t live.”
“Average life expectancy — 150 days.”
“We don’t save, we don’t support, we don’t do anything for such children…”
Termination was never an option for me.
But it was still hard to withstand the pressure.
Not direct — everyone outwardly agreed: “It’s your decision.”
But then came the lists:
These children suffer.
Can’t.
Don’t know how.
Don’t walk.
Don’t talk.
Can’t breathe.
Eat.
Live…
You’re presented with only one path — saving the doomed from suffering.
The first thing that helped me surface from the abyss were Sveta’s words:
“No one knows how it will be. Special children are capable of a lot too.”
Then I began looking for positive stories.
For Masha.
For myself.
To believe, to hope, to pray.
And a miracle happened.
Masha is alive.
She was born with average weight and height.
Breathed on her own.
Latched onto the breast.
Lives and develops without medical intervention.
For a long time I thought she was unique.
But reading stories in international support groups, I realized — no.
There are many like her.
Yes, the range is wide, but there are many strong children.
And they survive, grow, love, and give love.
I realized something else too:
Diagnostics cannot predict anything.
Masha had a 1 in 600 chance.
She was born with trisomy 18.
My friend had a risk of 1 in 13.
Her boy was born healthy.
He’s now 9 years old.
Our physiotherapist from Croatia says children without diagnoses are brought to her in droves.
She calls it No Name Syndrome.
Prenatal and postnatal — no abnormalities.
It takes years to discover what’s actually wrong.
There are countless genetic disorders.
Most are unstudied.
Most people never get tested.
I don’t even know the blood type of my four other children.
At every ultrasound, the OB asked about Masha:
“Does this child really have trisomy?”
All her organs are normal.
One heart defect closed spontaneously.
The other doesn’t require surgery and causes no issues.
She’s now 1.5 years old.
In Slovenia, there’s a group called Zavod 13, founded by the mother of a girl named Sofia with trisomy 13 — she’s already 9 years old.
International support groups:
SOFT: https://trisomy.org
Facebook groups:
Trisomy18.Trisomy13.Awareness
Trisomy Families, Rare Trisomy Parents
These are spaces where parents reach out at various stages — at risk, at diagnosis, after birth.
My personal statistics:
In one year — two dozen crying mothers after triple test results.
All of them — as it turned out — cried in vain.
Result (from a medical point of view): healthy child.
Result (from a perinatal psychologist’s view): prenatal stress, birth stress.
The consequences — that’s another topic entirely.
I’ll just highlight:
This test, when falsely positive, triggers a process that remains with the mother and child forever.
If it's already clear that the result won’t influence the decision to keep the pregnancy — is it really worth paying €50 for this kind of “pleasure”?
I’m happy that I work with a #humandoctor —
And that there is someone who honestly tells women all of this.