Help Baby Nash Fight

On September 20, 2025 at 4:08 PM, our little miracle, Nash Child, entered the world at just 34 weeks at Layton IHC. We had gone in early because Meg suddenly couldn’t feel him move. After testing, the doctors told us we needed to deliver immediately.

The moment he was born, everything stopped. Nash was blue, not breathing, had no strong heartbeat, and was completely unresponsive. After what felt like forever, the medical team was able to stabilize him, but that was only the beginning of a journey we could have never imagined.

The First Scare

Soon after birth, doctors discovered irregularities with his lungs and heart. He was intubated for respiratory support. That night, his breathing tube became dislodged—he coded and had to be revived. Because Primary Children’s was full, he was life flighted the next day to McKay-Dee, where he coded again during similar episodes. Once a room finally opened at Primary Children’s, he was life-flighted once more on September 25th.

A Rare Diagnosis

At Primary Children’s, we finally got an answer:

Congenital Lobar Overinflation.

His left lung was so overinflated it pushed his heart into the wrong place and collapsed his right lung. He underwent surgery to remove the lower lobe of his left lung.

During re-intubation, the anesthesiologist noticed abnormal anatomy. That led ENT specialists to perform a bronchoscopy—and they discovered the life-changing diagnosis:

A Type 4 Laryngeal Cleft

The rarest and most severe form.

A hole between his trachea and esophagus.

This explained everything—his breathing problems, the repeated tube dislodgements, the aspiration, and the terrifying coding episodes. There are only a handful of surgeons in the country capable of repairing a defect like this.

While preparing for next steps, Nash coded again during another bronchoscopy and flatlined for about 15 seconds. Thankfully, they were able to bring him back. He was re-intubated through the nose, and a feeding tube was placed directly into his intestines so nothing could enter his lungs.

A Cross-Country Fight

We were eventually guided—miraculously and clearly—to Johns Hopkins All Children’s Hospital in St. Petersburg, Florida, home to one of the only teams with experience repairing a Type 4 cleft. The approvals, timelines, and logistics that normally take weeks somehow fell into place in just days. Even the staff said, “This never happens.”

The transfer flight was the most stressful few hours of our lives, but Nash did incredible.

Surgery & Recovery

Nash underwent the extremely rare and complex cleft repair surgery. Thankfully, the surgeons were pleased with the repair and the early healing. He began breathing better almost immediately.

However, he failed his swallow study—as many cleft babies do—and continued to struggle with severe reflux and aspiration. So he underwent two more surgeries:

G-tube placement for safer feeding

Nissen fundoplication, wrapping the stomach around the esophagus to prevent reflux

He is now working through pain management, strengthening, and slowly building up feeds. His vocal cords were a concern, but doctors say they appear functional, and we’re finally hearing a little more sound from him.

What Comes Next

Help Nash grow, stabilize, and heal so he can thrive.

He will likely be in Florida for 6–12 weeks, with ongoing monitoring and possible future surgery depending on how his cleft continues to heal.

He has endured more surgeries, procedures, and pain than any baby should have to—but he keeps fighting. He is tough, resilient, and nothing short of a miracle.

This journey has involved:

Nash is a fighter—and he’s fighting to stay here with us.

Thank you for loving him, supporting him, and standing with us in this battle.

With all our love and gratitude

Colby and Meg