02/06/2026
♥️ H A P P Y • H E A R T • M O N T H ♥️
February is HEART month and we celebrate our heart warrior and all of the heart warriors out there, and spread awareness about congenital heart defects! 💙❤️
Diagnosis:
Emma was diagnosed shortly after birth with hypoplastic left heart syndrome and an intact atrial septum.
Hypoplastic Left Heart Syndrome (HLHS) is a severe congenital heart defect where the left side of the heart is underdeveloped. Specifically, the left ventricle, which is responsible for pumping oxygenated blood to the body, is too small or completely absent. Emma’s was completely absent. The aortic valve, aorta, and sometimes the mitral valve are also underdeveloped or malformed. This results in the heart being unable to pump oxygenated blood efficiently to the body.
Intact Atrial Septum (IAS): In HLHS, there is typically a communication between the left and right sides of the heart, often through a hole in the atrial septum (the wall separating the two upper chambers of the heart). However, in cases with an intact atrial septum, there is no hole between the atria. This means that the right side of the heart (which is still functional) cannot directly send oxygen-rich blood to the left side.
This is a critical situation because with no communication between the atria, the blood flow is severely restricted. The heart is essentially "blocked" from effectively circulating oxygenated blood to the body. This is why Emma needed emergency open heart surgery the day she was born.
Survival rates for infants with HLHS/IAS are low, with some case series reporting survival rates of 35–50% at one year. And yet here we are 9.5 years later, watching our miracle baby grow up! We are so thankful!