Adahlynn's Type 1 Laryngeal Cleft Story

Texas, USA  |  November 2024

By Kim Niemietz-Harston

Adahlynn was born on April 21, 2020, when Covid was a mystery and only one parent was allowed in the room with her. She was born via cesarean delivery, had respiratory distress, and pulmonary hypertension. 

On her second day of life when the nurses started to feed her (as she had a NG tube in her), they discovered she was aspirating. They did a swallow study on Adahlynn and found out she had something wrong with her esophagus/larynx area. They didn’t have the equipment to treat her, so they sent her to a different hospital.

It was here that they did a scope and discovered that she had a type 1 laryngeal cleft. This was all new to us and no one could really tell us much about it or what her outcome would be. She ended up having a G-tube placed with an expected surgery to repair it within six weeks after being discharged from the hospital (we spent five weeks in).

Learning how to care for her G-tube and the machine was tough for us as she was our fifth baby and the only one born with this condition. I had been able to breastfeed all of my other babies, and not being able to feed her naturally took awhile to get used to. Since we knew nothing about this condition, I tried researching online and found a limited amount of information. The most I learned about a laryngeal cleft was through a Facebook group.

The first six weeks of her life were challenging with all the new experiences and unknown prognosis. We did swallow studies and visited the ENT and wound care as she still had a suture wound from her G-tube site that had not healed. Our visit to the ENT went well as he looked again at the pictures of her scoping procedure. He thought her cleft was small and would possibly be okay without surgery. He left it up to us to decide if we wanted to do the stitch surgery to repair it, or hold off a little longer.

We chose to hold off as I had read that the stitch repair wasn’t always a true fix and would sometimes need to be repaired again.  We had a feeding therapist come in once a week to help us with trying to bottle feed her. She had sucked a pacifier since she was born and we worked on keeping her wanting to suck it. We thought it would be important for any future bottle feeding.

Adahlynn slowly began bottle feeding around 3-4 months. She had started off on thin liquid and  was slowly improving. Her swallow studies were getting better. We continued with feeding therapy until she was 7-8 months old. At this point, she was keeping everything down and had increased her fluid intake on thin liquid. She wasn’t aspirating or getting sick, so we just kept going. She was gaining weight. 

The ENT said that she didn’t need to come back unless we felt she needed to get seen for something. Her G-tube suture wound had healed, and it had now been 10 months. We got the okay to remove her G-tube, and so we did.

With much prayer and patience, we just kept going and letting her do as she could. Adahlynn learned to pace herself in drinking as she got older and has been doing wonderfully since. 

She now eats anything she wants and drinks fine. She will occasionally cough a little if she drinks too much. We heard that she would not be able to get off the G-tube from other’s stories on Facebook - that it was not common. For us, it was our miracle and we know it’s possible. 

She is now 4 years old, doing extremely well, and has her G-tube scar (GG) to always show her bravery!