Hi everyone!

It’s Mama Mad here.

I wanted to start a series called Med Chat where we fill you all in on some of the details of Ollie’s story (for those who are interested in the nerdy stuff).

It’s a lot to take in and that why I’m going to break it down into individual posts like this to hopefully make it easier to digest.

So let’s start with the most important part:

The Berlin Heart.

Why The Berlin?

To understand why Ollie is on the Berlin Heart, you first have to understand what’s going on with his own heart.

Ollie was born with Hypoplastic Left Heart Syndrome, or HLHS. That’s a rare and serious congenital heart defect where the left side of the heart doesn’t develop the way it’s supposed to. In his case, the left ventricle never formed at all. It’s just…not there.

The left ventricle is the part of the heart that’s responsible for pumping oxygenated blood to the rest of the body. So without it, your body simply can’t get the blood and oxygen it needs to survive.

Normally, babies with HLHS go through a series of complex surgeries (called staged palliation) to reroute the blood flow and help the right side of the heart take over the job. It’s not a cure, but it can give kids a decent shot at life with their own heart.

But Ollie’s case is a little more complex.

Not only is his left ventricle missing, but his aorta is also completely closed off.

That’s called aortic atresia, and it means there’s no “exit ramp” for the blood to leave his heart and go out to his body. Combine that with the fact that his right ventricle is weak and underperforming (we call that low RV function), and it became clear early on that the traditional surgical path wouldn’t be the best option for him.

His heart just didn’t have the strength to keep going.

That’s what brought us here—to Shand’s Children’s Hospital in Gainesville. One of the few centers in the country that offers infant heart transplantation.

But hearts don’t just show up the moment you need them. The average wait for a donor heart can be 6+ months. Some babies wait nearly a year.

So the question became: How do we keep Ollie alive and stable in the meantime?

Enter: The Berlin Heart

The Berlin Heart is a type of ventricular assist device (VAD), which is a fancy way of saying it’s a mechanical pump that takes over the job of pumping blood when the heart can’t do it on its own.

It’s designed specifically for babies and children.

The pump itself sits outside the body and is connected to Ollie’s heart through tubes that come out of his chest. It pumps blood through his body 24/7 and allows his other organs to stay healthy and well-oxygenated while we wait for the right donor heart.

This isn’t a long-term solution, but it is a bridge. It buys us time.

Time for him to grow.

Time for him to rest.

Time for the right heart to find its way to him.

The Berlin Heart is what’s keeping him alive right now. And thanks to it, Ollie is stable. He’s awake. He’s playful. He’s giving smiles, staring at all the shiny equipment, charming every nurse on the unit, and reminding us every day that he’s still fighting.

We don’t know how long the wait will be. But we’re here. And he’s here.

And thanks to the Berlin, we have hope.

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Please continue to pray that his Berlin suits him well and that it continues to function perfectly with his body while he awaits his perfect heart. 💛