Living with Laryngotracheoesophageal cleft
A rare birth difference with an opening between the voice box and food pipe, which lets food and liquid pass into the lungs.
Understanding Laryngotracheoesophageal cleft
Normally these structures are separate. With a cleft, swallowed food and liquid can pass into the voice box and lungs. Signs often appear in the first few months and include feeding problems, swallowing trouble, coughing, wheezing, noisy breathing (stridor), and repeated lung infections. There are four types, based on location and extent. It may occur alone or with other conditions such as CHARGE or VACTERL.
Signs & symptoms
Symptoms vary from person to person. GARD lists these among the most common:
- Feeding problems and trouble swallowing
- Choking and coughing
- Food or liquid going into the lungs (aspiration)
- Noisy breathing (stridor)
- Hoarse cry
- Repeated respiratory infections
Not everyone has every symptom. GARD's list comes from the Human Phenotype Ontology.
Diagnosis
- 1Talk with your doctor
Share the symptoms you've noticed, when they started and your family health history. Notes and photos can help.
- 2See a specialist
Specialists who may be involved include digestive system specialists, ear, nose, and throat specialists, genetic specialists and lung and breathing specialists.
- 3Ask which tests can help
Your care team will decide which exams and tests can confirm the diagnosis.
Care & treatment
- Care team
- Digestive system specialists (gastroenterologists); Ear, nose, and throat specialists (otolaryngologists); Genetic specialists (geneticists); Lung and breathing specialists (pulmonologists)
- Expert care
- Ask about multidisciplinary care centers for rare conditions
- Treatment
- GARD doesn't list specific treatments for this condition. Your care team will tailor care to your symptoms.
- Research
- Clinical trials and observational studies may be options. See the research section below.
General information, not medical advice. Your care team makes the decisions.
Everyday life
Living with a rare condition is easier with support.
- Connect with rare disease patient organizations for support
- Keep notes on symptoms, changes and questions for appointments
- Ask about patient registries that help research
- Look into financial aid and travel resources for care visits
Quick facts
GARD says changes in genes (also called variants) cause this condition. It lists autosomal dominant inheritance, and it can be part of an underlying syndrome.
Also known as: congenital cleft larynx; larnygeotracheoesophageal cleft; laryngeal cleft; laryngo-tracheo-esophageal cleft; laryngo-tracheo-esophageal diastema; lc
Patient organizations
Rare-disease groups that can help
- Global GenesRare Diseases · United States
- National Organization for Rare DisordersRare Diseases · United States
- Genetic AllianceRare Diseases · United States
- RARE FoundationRare Diseases · United States
You are more than your diagnosis
Perspectives from people navigating life with Laryngotracheoesophageal cleft.
Explore research for Laryngotracheoesophageal cleft
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