The Heart of a Warrior: Andrew’s Miracle Gift

Andrew’s Miracle Gift: Living Valves, Growing Hope, Lasting Future

Andrew’s miraculous heart is struggling again—and he needs a life-changing surgery. A recent MRI confirmed what we feared: both of his donor valves are leaking and narrowing. His right ventricle is under pressure. His aorta is dangerously dilated. Without intervention, he’ll face worsening health and repeated open-heart surgeries.

But there is hope—and we are holding on to it.

Andrew has been approved for a partial heart transplant at Duke University, a groundbreaking procedure that could give him a future without the looming need for repeated open heart surgeries that will inevitably fail him…

A future where his heart grows with him, so he can focus on living, not just surviving.

We’re launching this campaign to raise $35,000 to make that possible. It’s the only path to give him the miracle he deserves.

The Journey So Far

Andrew was born with Truncus Arteriosus, a rare and severe congenital heart defect. Even worse, his truncal valve was severely narrow and leaking… even before he was born, we were prepared that he may not live very long.

He had his first open-heart surgery at just one day old. That surgery gave him a donor conduit and a valve to redesign his heart’s structure and allow it to function. His surgeon said it was the most complex surgery he had done.

Then at 5 months old, Andrew had an emergency re-operation to replace both. And through it all, despite all the odds, he grew… and he’s been thriving.

He has always been a miracle. But after each surgery, his heart has always had a countdown.

Last summer, Andrew began showing symptoms that his heart was having difficulty. This fall, he underwent a catheterization to temporarily open his narrowing conduit.

It helped—for a while. But we always knew it was a temporary fix. The valves placed when he was 5 months old are no longer enough for his growing body.

His long-time cardiologist—who has known him since I was 24 weeks pregnant—said it was time for another surgery.

But the standard of surgical care for children with truncus involves delaying the next surgery as long as possible. Repeat surgeries are inevitable because donor tissue or mechanical valves eventually need to be replaced.

So for those standards, for the normal path, he would need to be much sicker, his heart struggling more, before he would be a candidate. “No one expected him to live even this long,” they said, “he’s not going to have a normal life”.

That didn’t sit right with us.

Because Andrew is thriving.

He’s active, strong, smart, and full of joy. A natural athlete. A budding engineer. A total goofball. A gentle soul. A snuggler. A “toughie,” as he likes to say.

Every day with him is a reminder that he has so much more left to live.

A Better Way Forward

We had been following a new, hopeful surgery at Duke University pioneered by Dr. Joseph Turek. The world’s first partial heart transplant was performed on a baby with Truncus just like Andrew—we connected with his family through our support group.

I sent my usual long email explaining everything. Dr. Turek replied within hours.

We met with him the next week. He reviewed Andrew’s full history and said:

“He’s a perfect candidate. I don’t want him to get sicker. I want him to stay exactly like this.”

This surgery is different. It uses living tissue from a child donor. With immunosuppressive medication, that tissue grows with the recipient. No more replacing valves every few years. No mechanical valves. Just one more surgery gives him the chance at a life without waiting for failure.

Andrew is now on the Partial Heart Transplant list. We could get the call at any time.

How You Can Help

Insurance will cover most of the surgery itself (the estimated cost is over $220,000), but many other critical costs are not covered. In fact, we found out it is an exclusion on our particular policy, even though this would typically be covered for transplant patients. So the massive costs we would incur include:

We’re asking for $35,000 to make this possible.

We are also applying for grants and using every resource we can— but we can’t do this alone.

Andrew’s Miracle Gift

To know Andrew is to love him—and to be loved by him.

He’s the miracle we didn’t know we’d get to

keep. Now we just need help giving him the miracle he deserves.

Please consider donating or sharing. Every bit helps. Every prayer helps. Every step gets us closer to Andrew’s Miracle Gift.

Thank you for being part of his story.

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To learn more about Andrew’s full story, check out the chronological posts or keep reading below:

The Heart of a Warrior: Andrew’s Story

A Parent’s Promise and an Impossible Beginning

When we found out we were expecting, we never could have imagined the journey ahead. Early on, our pregnancy felt normal, filled with excitement and anticipation. But everything changed when at an appointment with maternal-fetal medicine, we received news that no parent wants to hear: our baby had a congenital heart defect.

Not just any heart defect—Truncus Arteriosus, a condition so rare it affects only 100–200 babies per year in the U.S. But it wasn’t just the diagnosis that was overwhelming. Our baby’s case was one of the most severe our team had ever seen. His truncal valve—his heart’s most essential component—was completely non-functional.

We met with our cardiologist, and then our surgeon. They were compassionate and honest. The truth was crushing: they weren’t sure if anything could be done. The best medical minds would try, but ultimately, our baby would tell us what he needed.

I sat with my hands on my belly and whispered to him, “I promise we will do whatever is best for you. If you want to fight, we will fight. If you need to go, we will love you forever.”

But Andrew had already decided. He was going to stay.

A Miracle Warrior is Born

Andrew entered the world via a highly coordinated birth plan at two hospitals, with two full teams of specialists on standby. We didn’t get to hold him, but they did hold him by my face for just a few seconds before he was rushed away and intubated—his heart was struggling so badly.

There were signs of his strength, like his cry right when he was born… and his soft cry when he was held by me for those few seconds… the physician who intubated him told us that he was so calm, and it was so easy to do… I believe he knew she was there to help.

After they evaluated his condition at birth, his surgeon stayed on the cardiac floor overnight. He wasn’t sure Andrew would survive until the morning, let alone through surgery. But this little boy was ready.

At just 23 hours old, Andrew underwent a seven-hour open-heart surgery, one of the most complex of his surgeon’s career. The goal was to reconstruct his anatomy, replace his missing pulmonary artery, and give him a new donor valve—one that would allow him to live.

We literally watched his heart beating through his open chest for several days. We weren’t able to hold him until he was over a week old.

But when we did, he snuggled in, and we knew—we knew—he was here to stay. Hospitalization has ups and downs, and his did too. Mostly ups…

When he was 30 days old, we got to bring him home. Oh man, the truck ride home was so anxiety-provoking for us, and we did not sleep at all the first day (or days), as we were home without the heart monitors to tell us everything was okay! Eventually we settled in, learning to be new parents, with all the complications (his meds, he had an ng feeding tube, his appointments, the pandemic…).

We had been told to expect complications, struggles, setbacks. But Andrew was a happy baby! He smiled, giggled, he had such great focus, you could just tell he was soaking in everything. But inside his body, something was happening that no one could see.

Unexpected Second Surgery

When Andrew was almost five months old, we went in for a routine heart checkup. We expected another smooth visit—after all, he seemed fine.

Instead, we were told: “I’ve already spoken to the surgeon. You need to get him to the hospital now; you can drive him there faster than I can call the ambulance to come get him”. I’ll never forget the drive there, and talking to him in his car seat. Reminding him of the promises…

Once we arrived and he was on monitors, they made the plans (he’d have surgery 36 hours later). But in the meantime, this boy rolled over for the first time in the hospital! Literally, on his little play mat, rolling over to give his toucan a kiss, like he was telling us, “I got this.”

There had been no obvious signs…. There were subtle ones, but we kept following the standard plan…. His strength masked the severity of his condition. But without immediate intervention, he wouldn’t survive.

And so, not even 48 hours after that regular heart check up, Andrew had his second open-heart surgery.

He was just shy of five months old. And yet, when they carried him to the OR, his beloved giraffe in his arms, he looked at us with total calm. Like he knew. Like he trusted they would fix him.

His surgeon discovered that his donor valves had been obliterated in record time, likely due to an extreme immune response linked to a rare allergic condition (FPIAP). One was almost entirely gone, the other so built up with tissue it was basically unable to move.

The surgery went smoother than expected. Within what seemed like no time at all (and also like forever, but really only a day or so), Andrew was awake, playing with his favorite toys, holding his floppy fish and giving kisses to his toucan.

Just over a week later, we were home.

By six months old, he had bounced back so completely that if you didn’t know his history, you would never have guessed he had ever been sick.

A Thriving, Limitless Child—But a Failing Heart

Andrew grew. And grew.

He hit every milestone early—crawling, walking, running, riding a bike with training wheels at two years old. His intelligence soared—he learned to spell, count, and read before turning three. He became a little engineer, fascinated by how things work. Now he just turned 4 and is about ready to take the training wheels off. He’s swimming, he’s graduated from intensive speech therapy, he can do literally anything he sets his mind to… and let me tell you, that’s a lot every day!

He is funny. He is kind. He comforts others when they are sad. He tells us “I can be nervous AND brave”. He defends people he loves, and he loves fiercely.

But his body started telling us something.

Again, the signs are subtle. We saw a little blue around his lips. He started saying “I need a break” after running (but only for a second, then he was back at it). He became aware of his own body in ways that shocked us, at one point saying his heart “felt sad” and he was feeling very sick suddenly. On another night, after talking about his heart and upcoming appointment, he said: “My pipes are too loud.”

Andrew had heard his own heart struggling.

At his next appointment, his cardiologist confirmed what he already knew—his heart needed help again.

The Standard Path vs. The Miracle Option

For children with Truncus Arteriosus, the standard path is multiple open-heart surgeries over a lifetime. Because donor valves do not grow, every surgery is just a temporary reset. The countdown to the next one starts as soon as the last one is complete. Even with mechanical valves, which have been discussed as an alternative for him, they have to be replaced (and they require blood thinners that could really limit his life).

When we were told that to qualify for his next surgery, Andrew had to get sicker… More heart failure. More damage. More limitations…. Really, for us this was unacceptable. Why? Why would anyone want him to suffer?!

They don’t want him to suffer, it’s just the way things have been done. Years ago children with truncus wouldn’t have any options, so the standard path now is better than it used to be. Now we have another path, maybe his miracle option.

The Future: A Partial Heart Transplant

At Duke University, a pioneering surgeon, Dr. Turek, has developed a groundbreaking technique: Instead of using preserved donor valves, which fail over time, he uses living donor tissue from another child’s heart. This grows with the patient, meaning that for the first time ever, a child like Andrew might not need another open-heart surgery again. Dr. Turek wants to do the surgery while Andrew is strong, before his heart deteriorates.

But this means we need to relocate to North Carolina, thousands of miles from home, for an unpredictable amount of time.

I’m still scared… this is not without risks, just like the standard surgery isn’t without risks. But this option also has a hope for Andrew to not have to go through this over and over again. He deserves the very best opportunity.

How You Can Help

We need help to get Andrew the best chance at a full life.

Your support will cover:

Every donation, every share, every bit of support brings us closer to giving Andrew the future he deserves—one without the limits of countdowns until next surgeries.

Andrew is a miracle. Let’s help him get the miracle he needs.

#AndrewsMiracleGift

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With gratitude,

Kim, Joe, & Andrew