Living with Congenital chylothorax
A rare condition in newborns where lymph fluid collects around the lungs, causing breathing trouble.
Understanding Congenital chylothorax
It can cause breathing trouble, poor nutrition and a weakened immune system, either right after birth or in the first few weeks. It is the most common cause of fluid around the lungs in newborns. It can come from lymph duct differences or occur with chromosome conditions such as Noonan, Turner or Down syndrome, hydrops fetalis, or other birth differences.
Signs & symptoms
Symptoms vary from person to person. GARD's summary lists:
- Breathing difficulty (respiratory distress)
- Poor nutrition (malnutrition)
- Weakened immune function
- Fluid around the lungs
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 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
- 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
It can occur on its own because of developmental differences in the lymph duct, or with chromosome conditions such as Noonan, Turner or Down syndrome, hydrops fetalis or other birth differences.
Also known as: hydrothorax, congenital
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 Congenital chylothorax.
Explore research for Congenital chylothorax
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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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