Someone knocked gently, and the hospital room door opened.

“Good morning,” said a woman in her fifties with a perfectly neat hairstyle. “My name is Agnes. Do you mind if I clean now?” She paused when she saw my daughter and me eating breakfast. “I’m sorry. I can come back later.”
I thanked her probably too many times.

Moments later, a nurse came in. She greeted us by name, explained our plan for the day, and even found a tender joke to lighten the fear in our two-and-a-half-year-old daughter, Emanuela. She needed to prepare her for a catheter ablation.

It was June 2020 in the pediatric ward of the university hospital in Leuven, Belgium—a long way from where her story began.

Half a Heart

Emanuela was born in Bratislava, Slovakia, in January 2018 with a single ventricle heart—something we first learned about at week twelve of pregnancy while living in Lebanon, and later confirmed in Slovenia, my home country. Eventually, we settled in Slovakia, my husband’s homeland, where our tiny “frog,” as I lovingly called her, began life at the Children’s Cardiac Center.

At just 20 days old, she joined the #zipperclub those brave little ones with a scar from collarbone to chest.

She didn’t see her home until she was seven months old.
Her crib sat untouched. Her tiny clothes stayed folded and stored away close enough to reach, easier not to see. I tried to prepare myself (though I now know you never can) for the possibility she might never come home.

And we came close.
Post-surgical complications.
Resuscitation.
Machines I had never seen before.
ECMO keeping her alive.
No one could tell us what kind of life she would have, or if she would have one at all.

Her recovery was tangled with setbacks recurrent tachycardias, heart failure episodes, and infections. A second open-heart surgery at four months damaged a vocal cord. She rejected food until a permanent feeding tube became necessary.

As a journalist-turned-mother, I coped the only way I knew how: I wrote. I tracked every monitor, every medication, every feed, every cry, every tiny victory. Information my illusion of control kept me afloat in the storm.

Going Home

On day 205, we finally carried her through our front door.

I kept tracking everything: weight, temperature, medications, bottles taken or refused, diapers color and all. My calendar overflowed with therapies and check-ups.

For a little while, life steadied.
We even dared to imagine normalcy, knowing another open-heart surgery awaited around age three or four.

But just before her second birthday, severe stomach pain and vomiting sent us rushing back to the hospital an emergency surgery for intestinal malrotation and volvulus another life-threatening twist.

A Full Life, Hard-Won

Afterward, our family moved to Belgium. Emanuela’s first catheter ablation in Leuven failed, and a pacemaker was implanted. It felt like nothing ever came easily. Like we were always the “one in a million.” And always alone.

But months later, a second ablation succeeded. During her third open-heart surgery, her pacemaker was removed.

For the first time, her heart wasn’t our daily fear.

Her life today includes migraines, a hyperactive bladder, and ongoing emotional healing. But mostly, it includes joy.

Emanuela is seven now. She speaks four languages. She swims at her grandparents’ home in Croatia. She rides her bicycle, practices gymnastics, and lives life in motion unstoppable.

Looking Ahead

I often think about the knocking at the start of this story. In many places we’ve lived, that simple act of respect is not a given.

Now I understand why it mattered so much.
I was seen.
Our space our temporary home was honored.
Doctors knocked, too.

I was encouraged to ask questions. And I had many. Still do.

But I’ve watched mothers shrink themselves into corners, afraid to “bother” anyone, convinced their questions are “silly.” The gap between “us” and “them” is real.

Through years spent crossing countries, hospitals, and languages, I’ve built a circle of support with other heart families. Our children have different diagnoses. Our paths don’t look the same. Yet one thing connects us:

No one understands us like those who have walked this road.
Only we know.
Only we feel.
Same.