Living with Congenital heart block
A rare condition in which the heart's electrical signal is slowed or blocked, usually developing during pregnancy.
Understanding Congenital heart block
In affected infants, the electrical signal that makes the heart contract is slowed or completely interrupted. This can affect the heart rate and rhythm and limit how well the heart pumps blood. It generally develops between 18 and 33 weeks of pregnancy. The cause is poorly understood, but mothers with lupus or another autoimmune disease have a higher chance of having a child with it.
Signs & symptoms
Symptoms vary from person to person. GARD lists these among the most common:
- Blocked electrical signal between upper and lower heart chambers
- Complete heart block
- Premature birth
- Heart failure, in some
- Blue skin color, in some
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
Autoimmune Association and Fetal Health Foundation 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: Autoimmune Association, Fetal Health Foundation
- 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 Autoimmune Association 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 cause is poorly understood. Mothers with lupus or another autoimmune disease and parents with congenital heart disorders have a higher chance of having an affected child. GARD lists autosomal recessive inheritance.
Also known as: congenital atrioventricular block
Patient organizations
- Autoimmune AssociationCongenital heart block · United States
- Fetal Health FoundationCongenital heart block · United States
You are more than your diagnosis
Perspectives from people navigating life with Congenital heart block.
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