Kasyn's Laryngeal Cleft Story

Texas, USA  |  February 2025

By Taylor Nelson

Update: June 2025
Unfortunately just six months after his initial repair, Kasyn is needing another surgery, a cleft revision.

Original Story
Hi, I’m Taylor, and I’m the mama to the sweetest, bravest little boy, Kasyn. Kasyn was born a healthy 9 pounds 8 ounces, a full-term baby. A smooth pregnancy, an easy delivery—he came into the world strong and healthy, and there were no NICU stays or complications.

At around six months old, everything changed. Kasyn’s first hospitalization was for rhinovirus, what most would consider a simple cold. But for Kasyn, it meant a PICU stay, breathing treatments with heliox, respiratory distress, croup, and stridor.

In his first three years, Kasyn had over 80 hospitalizations, all due to respiratory distress and croup. He underwent more than 10 procedures, numerous exploratory surgeries, and seven ambulance rides. No child, and no mama, should have to endure that much.

I’ll never forget the countless times I’ve had to call 911, holding my baby as he gasped for air, pleading for help. I’ve done it more times than I care to admit—dealing with respiratory distress, croup, stridor, nebulizers, choking, pneumonia, swallow studies, airway scopes, oxygen cannulas, and racemic epinephrine. I remember sleep studies where he was hooked up to over 50 wires, his little body restrained to keep him from pulling them off.

Nearly three of the hardest years of our lives.

On the day before Halloween in 2024, we finally heard the words “laryngeal cleft” for the first time. I’d never even heard of it, and I didn’t even have time to ask questions. I just collapsed to my knees in relief. After years of pleading with doctors, we finally had an answer. For so long, I knew something wasn’t right, but no one could explain it. My instincts never stopped telling me this was more than just the normal illnesses kids go through.

I never stopped fighting for him, and I never will.

Less than two months after the diagnosis, Kasyn was in the operating room for another surgery, this time, a triple scope procedure. A team of doctors repaired his type 1 laryngeal cleft, and we are grateful for their care.

December 5, 2024:the day Kasyn’s type 1 laryngeal cleft was repaired. It hasn’t even been a month since the surgery, and I already see a night-and-day difference in my boy. He smiles more, he’s talking more, and best of all, he hasn’t had any respiratory issues. I feel like a weight has been lifted from my shoulders.

I pray that more awareness is raised about laryngeal clefts. We were lucky to get a diagnosis, but so many families aren’t. My biggest piece of advice is to be your child’s advocate and never stop fighting. My gut always told me there was something deeper causing his issues, and I’m so grateful I trusted it.

This is the story of Kasyn Strong. The story I would shout to the world if I could.