Hello! Meet my almost great-niece, Luna. I say almost because we are not actually blood related, but even if we were, I couldn’t love her more than I already do. I was a mentor to her mom, Solveig (soul-vay), through the Big Brothers Big Sisters program some ten years ago and can’t imagine my life without her or Luna in it. The space they occupy in my heart is a wild kaleidescope, with me marveling at the fluid beauty of it every single day.
Luna is obviously adorable, a sweetheart of the highest degree, super smart, possessing very fine motor skills, and though she did not show it in these photos, the giver of the most dazzling smile! But that is only part of what I want to tell you. This sweet girl of almost ten months has Congenital Heart Defects. In case you are like I was and don’t know much about them, here are some facts compiled from the Congenital Heart Public Health Consortium:
Congenital means present at birth. Solveig actually learned of Luna’s defects while pregnant, at her 20-week appointment, which allowed her to take even better care of Luna while eagerly awaiting her arrival.
Congenital Heart Defects (CHDs) are the most common birth defects, occurring in almost 1% of births.
Common examples include holes in the inside walls of the heart and narrowed or leaky valves. In more severe forms, blood vessels or heart chambers may be missing, poorly formed, and/or in the wrong place.
Nearly 40,000 infants in the U.S. are born with CHDs and are the most common heart problem in pregnant women.
Over 85% of babies born with a CHD now live to at least 18 (very good news!). However, children born with more severe forms of CHDs are less likely to reach adulthood.
Surgery is often not a cure. Many individuals with CHDs require additional operations and/or medications as adults.
Most causes of CHDs are unkown (Luna’s too). Only 15 – 20% of all CHDs are related to known genetic conditions.
Luna has Transposition of the Great Arteries, a Ventricular Septal Defect, and Double Outlet Inlet Left Ventricle (Solveig corrected a mistake I made). In a nutshell, Luna’s heart has holes where they do not belong, an artery in the wrong place, as well as arteries connecting to the wrong chambers. To the best of my knowledge, this means her heart is only pumping blood to one chamber, mixing blood that should be separated, not allowing enough oxygenated blood to the rest of the body, and causing strain on the heart and lungs, which can lead to pretty serious complications.
She’s already had one surgery, two days after she was born, and will have another on Friday, to help correct the problem, though there is no magic bullet, unfortunately. So, if you would, please say a little prayer, send a little love, some healing thoughts, anything and everything you’ve got. I would be ever so grateful!
