Living with Hypoplastic left heart syndrome
A heart condition present from birth in which the left side of the heart is underdeveloped.
Understanding Hypoplastic left heart syndrome
The left side includes the aorta, aortic valve, left ventricle, and mitral valve. At birth, blood flows through openings that normally close a few days later. There may be no symptoms for a few days. When the openings close, symptoms develop quickly, such as breathing problems, a pounding heart, a weak pulse, and ashen or bluish skin. Some children also have other heart defects.
Signs & symptoms
Symptoms vary from person to person. GARD lists these among the most common:
- Underdeveloped left heart chamber
- Underdeveloped aortic arch
- Breathing problems
- Pounding heart
- Weak pulse
- Ashen or bluish skin color
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 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
- 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 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
In most children the cause is not known. In some, isolated HLHS is genetic, due to changes in the GJA1 gene (autosomal recessive) or the NKX2-5 gene (autosomal dominant). It has also been reported with Turner syndrome, Jacobsen syndrome, trisomy 13, and trisomy 18.
Also known as: heart left ventricle hypoplasia; hlh - hypoplastic left heart syndrome; hlhs; hlhs - hypoplastic left heart syndrome; hypoplastic left heart; hypoplastic left ventricle
Patient organizations
- Conquering CHDHypoplastic left heart syndrome · United States
- Mended HeartsHypoplastic left heart syndrome · United States
You are more than your diagnosis
Perspectives from people navigating life with Hypoplastic left heart syndrome.
Explore research for Hypoplastic left heart syndrome
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