Living with Congenital tracheomalacia
A condition in which a baby is born with weak windpipe cartilage that can make breathing noisy or hard.
Understanding Congenital tracheomalacia
The windpipe can collapse when breathing out. Symptoms range from mild to severe and may include noisy breathing (stridor), shortness of breath, and bluish skin during spells. It can occur on its own, with other airway problems, or with other birth differences. It often resolves on its own by the second year of life.
Signs & symptoms
Symptoms vary from person to person. GARD lists these among the most common:
- Noisy breathing (stridor)
- Wheezing
- Cough
- Frequent colds
- Floppy voice box tissue (laryngomalacia)
- Trouble breathing
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, 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.
- 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); Lung and breathing specialists (pulmonologists)
- 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
GARD says changes in genes cause this condition. It doesn't name a gene.
Also known as: congenital major airway collapse; tracheomalacia, congenital
Patient organizations
- Cure TBMCongenital tracheomalacia · United States
- Coping With Laryngomalacia, IncCongenital tracheomalacia · United States
You are more than your diagnosis
Perspectives from people navigating life with Congenital tracheomalacia.
Explore research for Congenital tracheomalacia
Explore actively recruiting Congenital tracheomalacia studies with HealthSpark.
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- Recruiting studies from ClinicalTrials.gov
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- Eligibility is confirmed by the study team
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Powered by HealthSpark, our AI chat helper · Study information from ClinicalTrials.gov · Eligibility is confirmed by the study team.
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