Friday, July 31, 2009
Our Family in Crisis
My sweet, beautiful, 16-month old nephew (Eli) has been diagnosed with a congenital heart defect. OPEN HEART SURGERY is required, and sooner rather than later. He is in the early stages of heart failure. At almost 17-months old, the cardiologist was shocked that he had made it this far and was as "healthy" as he was. It isn't uncommon for babies to die by 3 or 4-months of age if the condition goes undiagnosed.
WE ARE IN SHOCK, no one more so than my sister and her husband. In hindsight, all of the signs and symptoms were there, but b/c they presented individually, each could be attributed to something else. At a recent weight check (Eli is very tiny...all makes sense now) his pediatrician heard a loud murmur undetected before. A pediatric cardioligist confirmed the worst...
Eli is very sick. He has been diagnosed with Atrioventricular Canal Defect. Basically, he has a large hole in the center of his heart between the upper and lower chambers. In addition, his tricuspid and mitral valves that normally separate the upper and lower chambers of his heart did not develop normally. Instead, he has one large, single valve forming over the area of the hole.
This heart defect is repairable, but from the research I did at the American Heart Association website, he will also need valve repair and possibly subsequent surgeries. At this time we do not have a surgery date. My sister must first meet with the sugeon and get on his surgery schedule. We do know this...surgery will be required before the end of August.
Since I began blogging, my sister and I have been shocked at the number of families whose babies/toddlers/children have been touched by crisis whether it was heart defects, cancer, accidents, etc. We constantly call each other to say, "have your read so and so's blog? Oh my gosh, how is their family coping?" Now, we are that family.
I plan to travel to St. Louis to be with my sister, her family, my parents, and her in-laws. I will travel without my own little ones so that I can focus on Joy, Jeff, Alister and of course, Baby Eli. I ask you for your prayers on behalf of Eli. Thank you.