Living with Visceral heterotaxy
A condition in which the organs of the chest and belly are arranged abnormally, with complex birth defects.
Understanding Visceral heterotaxy
People have complex birth defects that can affect the heart, lungs, liver, spleen, and intestines. There may be no spleen or several small spleens that work poorly. Signs show in the newborn period or infancy.
Signs & symptoms
GARD doesn't list specific symptoms for this condition yet. Its summary describes these:
- Heart structure differences
- Lung differences
- No spleen or several small spleens
- Liver positioned across the middle of the body
- Intestine differences
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, genetic specialists and heart and blood vessel 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); Genetic specialists (geneticists); Heart and blood vessel specialists (cardiologists)
- 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 Heterotaxy Connection 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 lists autosomal dominant, autosomal recessive, and X-linked inheritance. It says changes in genes (variants) can cause this condition.
Also known as: heterotaxia; heterotaxia syndrome; heterotaxy syndrome; heterotaxy, visceral; incomplete situs inversus; lateralization defect
Patient organizations
- Heterotaxy ConnectionVisceral heterotaxy · United States
- Mended HeartsVisceral heterotaxy · United States
You are more than your diagnosis
Perspectives from people navigating life with Visceral heterotaxy.
Explore research for Visceral heterotaxy
Explore actively recruiting Visceral heterotaxy 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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