Diagnosis

Diagnosing a laryngeal cleft can be challenging. The symptoms may be vague and nonspecific, and the larynx cannot be easily seen. Since airway clefts are rare, many providers have never knowingly encountered a patient with one and may not recognize the symptoms. In addition, diagnosis and treatment have only been regularly performed since the 1990s, so it’s not a well-known process for many providers. While type 4 clefts may be diagnosed in a matter of hours or days due to the severity of the symptoms, many type 1 - 3 patients experience a lengthy journey to diagnosis that may take months, years, or even decades.

There are a variety of tests and procedures medical providers may order to help diagnose a laryngeal cleft. The specific assessments vary by doctor, hospital, and country. As with any rare disorder, it’s important to work with providers experienced with this birth defect. Outcomes are best when using a comprehensive team approach that includes an otolaryngologist (ENT), gastroenterologist, pulmonologist, speech-language pathologist (SLP)/feeding team, and sometimes a neurologist.