CHD Awareness Week

I will be updated everyday this week with parts of our story.

Basic facts: 1/100 babies are born with a heart defect, thats 40,000 babies a year.

Most causes of CHD are unknown.

25% of children born with CHD need heart surgery other intervention to survive.

Louis' heart!

I knew during pregnancy that Louis would need corrective heart surgery so I did a lot of research on heart defects and pediatric intensive care.

Louis’ formal diagnosis is Transposition of the Great Arteries, Double Outlet Right Ventricle, Ventricular Septal Defect, Atrial Septal Defect,  and mild Pulmonary Stenosis. Basically, he has a hole between his ventricles (this is a common defect, often it self corrects but Louis' needed surgical repair due to the size), his aorta (carries blood to the body) and pulmonary valve (carries blood to the lungs) were in the wrong place, so oxygenated blood was flowing to and from the lungs, instead of all throughout the body. AND both the aorta and pulmonary valve were flowing to his right ventricle. Best case scenario, all of this is palliatively repairable in one open heart surgery within his first month of life. Something to keep in mind, though many heart defects can be repaired, their anatomy is never going to be ‘normal’ so complications and additional corrective procedures are common. Congenital heart defects require lifelong care.

Something I hadn't considered, while looking at all these diagrams, an infant’s heart is the size of a strawberry. The most challenging part of Louis' procedure would be the placement of his coronary arteries, moving them from their current location to the new aorta, they are just 1-2 millimeters in size. MILLIMETERS!  Grab your ruler and look at the smallest unit of measure- that’s a millimeter. If these arteries aren't placed exactly right, it can result in restricted blood flow to the heart causing stroke or heart attack, even heart failure.

Our hospital is so special to us. They became a home-away-from-home for us in the way they provide comfort and care to our son but also to us as terrified new parents. They continue to provide comfort to our family by connecting us with a community support with local non-profits dedicated to wellness, CHD families. Our pediatric intensive care unit would benefit from your donations here: Cardiac Wish List