Living with Congenital laryngomalacia
A condition in infants where soft voice box tissue collapses inward during breathing in, causing noisy breathing.
Understanding Congenital laryngomalacia
It usually shows up at birth or soon after. The most common sign is noisy breathing (stridor), often worse when the baby is on their back or crying. In more severe cases there can be harder breathing with the chest pulling in, poor weight gain from feeding difficulty, pauses in breathing and blue color. Most cases occur with no family history.
Signs & symptoms
Symptoms vary from person to person. GARD's summary lists these:
- Noisy breathing (stridor)
- Chest pulling inward when breathing
- Poor weight gain from feeding difficulty
- Pauses in breathing (apnea)
- Blue skin color (cyanosis)
- Voice changes
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 ear, nose, and throat specialists and genetic specialists.
- 3Ask which tests can help
Your care team will decide which exams and tests can confirm the diagnosis.
- 4Connect with expert centers
Cure TBM may keep lists of experts for this condition.
Care & treatment
- Care team
- Ear, nose, and throat specialists (otolaryngologists); Genetic specialists (geneticists)
- Expert care
- Expert lists: Cure TBM
- 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 Cure TBM and other patient organizations
- 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
The underlying cause is unknown. Most cases occur by chance with no family history. GARD lists autosomal dominant inheritance for some families.
Also known as: laryngomalacia; softening of voice box tissue
Patient organizations
- Cure TBMCongenital laryngomalacia · United States
- Coping With Laryngomalacia, IncCongenital laryngomalacia · United States
You are more than your diagnosis
Perspectives from people navigating life with Congenital laryngomalacia.
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