Hope in the Heartbreak

I used to think that once you saw two pink lines on a pregnancy test, life would begin to open up—joyfully, hopefully, forward.
For a little while, it did.

We had just gotten married and moved into the kind of life we had worked so hard to build—careers steadying, plans coming together, and this beautiful surprise: a baby. Our first, and we thought, likely our only. A little boy, exactly what we’d hoped for.

It felt like the beginning of everything.

Until, suddenly, it didn’t.

A Diagnosis That Changed Everything

At a routine anatomy scan, I remember watching the screen and smiling, completely unaware that within minutes the air in the room would change. That the radiologist’s tone would quiet. That we’d be ushered into another room and told that something wasn’t right with our baby’s heart.

There was only one ventricle.

They called it a complex congenital heart defect. The kind that requires multiple surgeries just to survive. The kind that doesn’t guarantee survival at all.

Genetic testing had all come back normal. Even the amnio. Everything until that point pointed to a healthy, growing baby.

And yet now, here we were—suddenly drowning in words like palliative, unrepairable, transplant, and comfort care.

I remember hearing them say he would need a series of surgeries, the first one shortly after birth. And even if he made it through, his heart would eventually fail. He would likely need a transplant—possibly even a dual organ one. Liver and heart.

We were being asked to make decisions I didn’t know parents ever had to make.

Living Inside Grief While Pregnant

I tried to picture myself giving birth to him and saying goodbye hours later. I tried to imagine holding him and watching the monitors flatline. I tried to imagine living through that.

And I couldn’t.

At first, we thought we would carry him to term and offer only comfort care. No interventions. Just love. It felt like the most merciful choice.

But the further along I got, the more I bonded with him. Every kick, every hiccup, every heartbeat on the monitor—it made him more real. And the idea of not doing everything possible to try… that started to feel unbearable too.

We changed our course. We chose to intervene. We chose the surgeries. The machines. The long hospital stays. The unknown.

Because even if it meant heartbreak later, we wanted a chance at hope now.

The Loneliest Kind of Love

Those months between the diagnosis and his birth were the loneliest I’ve ever known.

Pregnancy became a strange kind of purgatory. People would ask how I was feeling, if I was excited, if I had a name picked out. And I would smile and nod, but inside I was carrying a storm.

Every movement from him was a paradox—both a comfort and a reminder of what we might lose.

I tried to be strong for my husband. He was trying to hold me together while holding himself together, and I didn’t want to burden him more. But the grief leaked out anyway. In quiet moments. In the shower. In bed at night when I couldn’t sleep.

I found myself snapping at things that didn’t matter, then apologizing through tears. I’d walk past baby clothes in a store and have to leave my cart behind. I couldn’t even talk about the future—not really.

We were surviving, not dreaming.

A New Kind of Beginning

When our son was born, he didn’t cry right away—but he was here. He had a name. A soul. A fighting chance.

The days that followed were a whirlwind of wires, beeping monitors, NICU rounds, and whispered prayers. At one point, I remember placing my finger in his tiny palm and feeling him squeeze back—and for the first time in months, I felt something that almost resembled peace.

He had his first surgery a few weeks later.

And he made it.

He’s not out of the woods—not even close. His heart is still fragile. More surgeries are ahead. We know the future might hold transplants, complications, setbacks we can’t yet predict.

But he’s here.

And we are still here.

Healing, Together

People like to end stories with certainty, with wrapped-up bows. I can’t offer that. We’re still in the middle of everything. But I can tell you that we’re healing.

Therapy has helped. Giving ourselves permission to grieve, even as we parent, has helped. Letting go of the pressure to always be strong—and just being honest—has helped.

There are still days when I cry in the car or get quiet in the middle of dinner. There are still moments when I watch my husband play with our son and feel the deepest gratitude and fear tangled up together.

But there’s laughter now, too. And songs. And firsts. And baby feet kicking in the bathtub.

There’s life.

And that’s more than we thought we’d get.

If You’re in This Right Now

If you’re in the waiting place…
If you’ve just gotten the diagnosis…
If you’re walking the road of impossible decisions…

I want you to know you’re not alone.

You are doing the bravest thing a parent can do—loving in uncertainty, hoping through heartbreak, showing up when everything feels broken.

Whether you choose intervention or comfort care, whether your baby lives for minutes or years—you are their parent. Their safe place. Their home.

And that love? That’s the only certainty that ever really matters.