Santiago’s Type 1 Laryngeal Cleft Journey
New York, USA
By Fallon Meneses
Hello, my name is Fallon. Professionally I am an emergency room technician working at a local busy hospital. My favorite title is MOM! I am a wife and mother to 3 daughters and 1 son.
My son, Santiago, was born via c-section at 39 weeks old. His delivery was good, but he aspirated meconium and needed CPAP after delivery for a brief time. Luckily, he did not need the NICU.
Everything was good and we brought him home. I noticed right away things were different with his feeding and sleeping patterns. He constantly spit up, cried, choked, and feeding him was a fight and not enjoyable for anyone!
Around one month he got the diagnosis of failure to thrive as he was not gaining weight, and his first pediatrician was concerned. This was when we started getting referred out to specialists. It felt like a circle dance of being passed around to every specialist who said something is definitely going on but it is not my specialty.
GI said it was reflux, and put him on medication that did not help. We tried eleven different formulas.
At two months of age, his pediatrician suggested he had cystic fibrosis then offered no help to get an answer.
Around four months, Santiago gave up and stopped eating. He had swallow studies, X-rays, ultrasounds, tons of bloodwork and still no answers. He was sent home with a NG-tube.
During an admission, a lovely nurse said Santiago had a tongue and lip tie and told me about a specialist. My son had tongue and lip tie repair, and I thought everything would magically be fixed, but he still struggled.
I took Santiago to a second pediatrician who threatened to call child protection services (CPS) on me because she didn’t read any of his medical records and assumed I was neglecting him.
A third pediatrician helped for a while. The doctor ordered labs that were always off, and said my son needed the big gun doctors. We saw GI, metabolism, and genetics in Pennsylvania. More tests: colonoscopy, endoscopy, bloodwork, genetic testing, and still no answers.
Fast forward, we have been to Massachusetts, New York, and many more for my son. There had been many swallow tests, so many blood tests, and no answers.
Santiago now has a fourth new pediatrician who is actually amazing.
In May 2025, my son had his first episode of unconsciousness during a diaper change. He was not ok, and I took him to the hospital where I work. He was taken care of by so many wonderful people.
Santiago got transferred to the children’s hospital where they dismissed it as breath holding. My gut told me no! I got him in with a neurologist in Massachusetts. Santiago had a full work up, MRI, EEG, echo, and more that were all normal.
During the second episode, he was playing outside, tripped, fell, and passed out. I brought him to my hospital where he was monitored and diagnosed with a brief unexplained event (BRUE). My guts told me this was not the case.
The third episode happened a few weeks later at a high school football game. Santiago went unconscious, and everything I normally do didn’t work. I was in the bleachers and everyone around me was panicking. I could see the ambulance across the field, but my son was blue and would not breathe. I knew if I went to the ambulance that was so far away, he would go into cardiac arrest, so I gave him mouth to mouth resuscitation and after four tries he came back to me.
The next day I called his ENT doctor who kept saying it was breath holding. Two days after that Santiago was in the operating room getting a laryngoscopy. An hour and a half later the doctor came out and said you were right; Santiago had laryngomalacia and a type 1 laryngeal cleft. My concerns were validated!
On October 13, 2025, my son had the surgery and repair he so desperately needed. He has a long road to recovery and is getting speech, feeding therapy, and nutrition therapy in the home due to bad muscle memory and his fear of eating. My message to anyone struggling with this is always trust your gut and never give up! I was dismissed by many doctors, but I never stopped. Advocating saved my son's life! Never give up and know you are not alone.