Living with Double outlet right ventricle
A rare heart condition present at birth in which both main arteries come mostly from the heart's right lower chamber.
Understanding Double outlet right ventricle
In a typical heart, the two large arteries come from different pumping chambers. In this condition, both come mostly from the right lower chamber (right ventricle). Signs show up in the newborn and infant years. Some people also have other features, such as cleft palate or mild intellectual disability.
Signs & symptoms
Symptoms vary from person to person. GARD lists these among the most common:
- Blue-tinted skin (cyanosis)
- Hole between lower heart chambers (ventricular septal defect)
- Heart murmur
- Fast breathing or fast heart rate
- Feeding difficulties and poor weight gain
- Narrowed pulmonary valve (pulmonic stenosis)
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 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.
- 4Connect with expert centers
Conquering CHD may keep lists of experts for this condition.
Care & treatment
- Care team
- Genetic specialists (geneticists); Heart and blood vessel specialists (cardiologists)
- Expert care
- Expert lists: Conquering CHD
- 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 Conquering CHD
- 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 a person's genes cause this condition. It doesn't list a specific gene.
Also known as: dextrotransposition of aorta; dorv; dorv - double outlet right ventricle; double-outlet right ventricle; origin of both great vessels from right ventricle; transposition of great vessels, interventricular septal defect and overriding aorta
Patient organizations
- Conquering CHDDouble outlet right ventricle · United States
You are more than your diagnosis
Perspectives from people navigating life with Double outlet right ventricle.
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