Josiah’s Type 1 Laryngeal Cleft Journey
Massachusetts, USA
By Devika Pandit
For five years straight, Jojo has been fighting battles no little boy should ever have to endure. Five years of back-to-back sickness. Five years of coughing fits, restless nights, ER visits, and breath that came too shallow, too fast, or too hard. Every time he seemed to recover, something else would hit him again. And as his mom, all I could do was hold him, pray over him, and refuse to let hope slip through our fingers.
As an infant, Josiah had difficulty feeding. I always pumped and bottle fed him, but even with this, milk came out of his nose every time and he projectile vomited.
It wasn’t long before the pieces of the puzzle started showing themselves. Doctors found fluid in his lungs. Then came the diagnoses—high risk aspiration, tracheomalacia, bronchomalacia, and a narrow middle lobe in his lung. Words no parent expects to learn. Conditions no parent wants their child to have. But we learned them anyway, memorized them, lived with them, because that’s what you do when your child’s health becomes your world.
Our first doctor didn’t help. We went in with heavy hearts and came out with heavier ones—no direction, no urgency, no hope. It felt like screaming into a void, like begging someone to listen and being met with silence.
Still, we kept pushing.
Another doctor we saw performed a triple scope—something we believed might finally reveal what was hurting my son. Instead, we were told the results were normal by a doctor whose bedside manner only deepened the fear we were already carrying. When your child is scared and vulnerable, compassion matters. And we didn’t find it.
So we went to an airway center for a second opinion— my last hope for someone to truly see Jojo.
And they did.
They listened. They cared. They saw urgency where others had not.
They didn’t dismiss our fear—they acknowledged it.
They didn’t question the symptoms—they confirmed them.
The doctor reviewed Josiah’s history, was super straight forward, and said they would like to get another triple scope. If a laryngeal cleft was found, it would be repaired right then and there. And they put Jojo on the schedule for the soonest appointment.
For the first time in so long, the path forward felt real.
The day of the surgery and stitch repair—June 6, 2025—changed us forever.
We waited in that room, emotionally drained, trying to stay strong while Jojo was behind those doors. But nothing—nothing—compared to the moment after the surgery.
There was an hour of stillness.
An hour of silence.
An hour of watching our baby breathe.
Just Jojo and the anesthesiologist in the OR room. No noise except the soft beep of the monitor. No motion except the rise and fall of his chest.
Every breath felt like a prayer. Every second stretched painfully slow. That hour was the hardest hour of our lives.
For Josiah, waking up from anesthesia was smooth. As soon as we got to the PACU, Josiah became very combative. To make him comfortable, I gave him his medications. We stayed one night in the hospital where Josiah started to eat a whole lot of Italian ice and Jello provided by the hospital.
We started to wean him off of thickeners eight weeks after his surgery. Every week we had to add one extra ounce of liquid per packet of thickener. It took a long time because when Josiah got sick, we would have to return back to the concentration of the previous week and stay there until he felt better.
On November 4, 2025, Josiah was completely off of thickened liquids.
Josiah isn’t coughing and choking like he used to. He is eating more now, but his weight hasn’t changed much. An aerodigestive doctor prescribed a powder to mix into his drinks and foods to help him get the nutrients he needs.
Jojo made it through. My boy fought. My boy stayed strong. My boy is finally on a path to healing after years of suffering.
This is Jojo’s journey—a journey no family should go through alone. And now, we want to turn our pain, our fight, and our story into something bigger!
Let’s spread awareness.
For laryngeal clefts.
For tracheomalacia.
For bronchomalacia.
For airway disorders.
For families who feel unheard.
For children who suffer silently.
No parent should have to fight this hard to be listened to. No child should wait years to be properly diagnosed. And no family should feel alone.