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About HLHS
Half the Heart. All the Fight.
Renee was born with Hypoplastic Left Heart Syndrome — a condition where the left side of the heart is severely underdeveloped. Here's what that means, and why research and support matter so much.
What is HLHS?
Hypoplastic Left Heart Syndrome (HLHS) is a rare and complex congenital heart defect in which the left side of the heart is severely underdeveloped. The left ventricle, aorta, and mitral valve are all smaller than normal, making it difficult for the heart to pump oxygenated blood to the body.
How Common Is It?
HLHS affects approximately 1 in every 4,344 babies born in the United States — about 1,000 babies per year. It accounts for roughly 2–3% of all congenital heart defects and is one of the most serious.
Treatment
HLHS requires a series of three open-heart surgeries: the Norwood (Stage 1), the Glenn (Stage 2), and the Fontan (Stage 3). Some patients may eventually require a heart transplant. With advances in surgical care, many children with HLHS are now living into adulthood.
Why Research Matters
The Children's Heart Foundation funds research dedicated to improving the diagnosis, treatment, and quality of life for individuals with congenital heart defects. Every donation helps scientists and doctors find better solutions for children like Renee.
The Three-Stage Surgical Journey
Children with HLHS undergo a series of palliative surgeries to reconstruct the heart's circulation.
Norwood / PA Banding
Days after birth
Reconstructs the aorta and creates a shunt to maintain blood flow to the lungs. Renee had PA Banding as her Stage 1 procedure.
Glenn Procedure
4–6 months
Connects the superior vena cava directly to the pulmonary artery, reducing the workload on the single ventricle.
Fontan Procedure
2–4 years
Completes the separation of oxygenated and deoxygenated blood by connecting the inferior vena cava to the pulmonary artery.
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Your support funds
life-saving research
The Children's Heart Foundation is the leading nonprofit dedicated to funding congenital heart defect research. By supporting Team Renee in the 2026 Charlotte Congenital Heart Walk, you are directly contributing to that mission.