Reed's Laryngeal Cleft Story

South Carolina, USA  |  September 2026

By Kirbi Lamb

Reed was born at 40 weeks with no complications at birth. His older brother, Finn, was four years old at the time and had already been through a complicated medical journey with a repaired type 1 laryngeal cleft, so we were on high alert with Reed from the very beginning.

I was so grateful when Reed was born in the 80th percentile for weight and immediately began breastfeeding. He even did the "breast crawl" that I had only ever seen in videos—he literally scooted himself up my chest and fed for an hour after birth. After having the exact opposite experience with Finn, I was in heaven. I remember thinking that maybe this time, feeding would be easy.

Unfortunately, that first beautiful feeding experience didn't last. Reed quickly became a very fussy eater. Some nights, he would latch and unlatch and cry from 10 p.m. until 2 a.m. He refused to take anything other than my breast milk, and he began vomiting entire feedings several times a week. When he did feed, I could actually hear him physically grunting with every swallow.

Because of everything we had experienced with Finn, I had a strong feeling that Reed had a laryngeal cleft too. I knew the signs now. But when we took him to his pediatrician and GI specialist, they both suspected a milk allergy instead. I was actually very hopeful that they were right—that maybe we had found a simple explanation for everything. I eliminated dairy from my diet, but Reed's problems continued.

By 13 weeks, I had to make the incredibly difficult decision to stop breastfeeding. Reed was only feeding in his sleep, was choking on my breast milk, and my mental health was rapidly declining from the lack of sleep and the trauma of navigating feeding problems with Finn. I needed medication for my mental health, and I knew that Reed needed thickened liquids. Making that decision was heartbreaking. 

It took 10 hours for Reed to finally accept a bottle from his dad. I had to physically remove myself from the house because he would not take it while I was there. I cried the entire day while my family tried to comfort me. It felt like I was grieving the breastfeeding experience I had desperately wanted, while also knowing that I had to do what was safest for my baby and for myself.

Eventually, a negative milk allergy test and a swallow study showing laryngeal penetration reinforced what my gut had been telling me all along: Reed likely had a type 1 laryngeal cleft. But getting that diagnosis was still not easy. 

At eight months old, Reed was scoped by his first ENT, who told us that he did not have a laryngeal cleft. I knew from Finn's experience how important it was to get the right diagnosis, so four months later, I sought a second opinion. That ENT found the cleft. Reed's Type 1 laryngeal cleft was both identified and repaired at 12 months old.

This time, our family was able to move much more quickly. We already knew what aspiration could look like. We knew that a child could grow normally and still have a significant swallowing problem. We knew that a normal test or a reassuring appointment didn't necessarily mean everything was okay. Most importantly, I had learned to trust my instincts. 

We thickened Reed's liquids and repaired his cleft much earlier than we had with Finn. He has only experienced one respiratory infection in the five years since his birth, and I believe that identifying the problem early, thickening his liquids, and repairing his cleft played an important role in protecting his lungs.

Our approach to feeding was also completely different this time around. With Finn, we had tried so hard to follow feeding milestones and what we thought we were "supposed" to be doing. With Reed, I followed his cues. Reed stayed on purees well beyond his first year. He took his bottles best while he was asleep, so I "dream fed" him for three years. Rather than fighting him to eat during the day, we slowly decreased the amount of formula he received while sleeping as his daytime calories gradually became adequate.

We also eventually learned that Reed, like his brother, had lactose intolerance and acid reflux. Other GI conditions, including celiac disease and eosinophilic esophagitis (EOE), were ruled out. Understanding those additional issues helped explain some of the feeding struggles he had experienced early in life.

By the time Reed was four, he had become a very typical eater. Today, he loves trying new foods. Green vegetables and raw carrots are even some of his favorites! Watching him happily eat a plate of green vegetables is something I will never take for granted.

Reed's journey was very different from Finn's, but in many ways, Finn's experience changed everything about the way we approached Reed's care. We knew what we were looking for. We knew that a child could be growing well and still be aspirating. And most importantly, we knew to listen when something didn't feel right. 

I will always be grateful for the lessons Finn's journey taught us, even though I wish we had never had to learn them. Because of those lessons, Reed was diagnosed and treated much earlier, and he was spared many of the complications his brother experienced.