the diagnosis...

over the next few weeks we learned the details of our little girl's heart condition. there were numerous things wrong with her little heart.

the most serious condition was called 'Ebstein's Anomaly'. this is where the tricuspid valve is displaced lower into the right ventricle than it should be, causing numerous problems. to start with, the right atrium is too large and the right ventricle is too small to properly function.

because the valve is so low it doesn't close as it should with each heartbeat, causing blood to leak between the atrium and ventricle. this leakage is known as 'Tricuspid Regurgitation'.

additionally, the heart is working harder than it should causing what's known as 'Ventricle Hypertrophy' in both her right and left ventricles. this is where the walls of her heart are too thick.

they felt this thickening of the walls was most likely caused by 'Aortic Stenosis' or 'Coarctation of the Aorta'. this is where there is a narrowing somewhere in the aorta that causes the blood to not flow properly, causing the rest of the heart to work harder to get the blood where it needs to go.

she also had what's referred to as 'PFO' or 'Patent Foramen Ovale', which is an atrial septal defect. most ebstein's patients have an artial septal defect in the form of an extra hole in between the atriums. while she didn't have an extra hole, the hole that was present was large and prominent. the concern was that the piece of tissue that comes up to close the hole at birth wasn't big enough to entirely close the hole - creating, in essense, a second hole.

she had excess fluid around her heart, also a sign of her heart working too hard.

she had a very sick little heart that would require a series of surgeries to correct. we were tasked with the responsibility of determining a treatment plan to give her the best chances of survival. where do you even start???

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