Our little Bama (Madeline), has gone in for routine cardiology appts. since she was 4 years old. She was diagnosed with a mitral valve prolapse with regurgitation at that time. On Nov. 17, 2014 she went in for her routine cardiology appt., but it wasn't routine. They noticed a change in her aortic root and stem. There was some growth. Blood tests and genetics confirmed what the cardiologist thought she might have, Marfan Syndrome. A genetic disorder that affects the connective tissue in the body. The family is being tested as well. We are awaiting test results to come back for the rest of us. Our little active athlete now has a condition that does not allow her to play any contact sports or do any heavy lifting of any sort. As it may put a strain on the area of her aorta that is already weakened by her disorder.
Yesterday we had a scare that no parent ever wants. I got a call while I was a work saying Madeline was complaining of pressure and a sharp pain in her chest. A call to the advice nurse and we were on our way to the ER for some tests to rule out any of the scary stuff that can happen with Marfan Syndrome (aortic dissection or pneumothorax). All test came back normal so they think that it may by musculoskeletal pain due to her Marfan disorder. The muscles that run along the chest wall could have loosened causing discomfort because of shifting. It's all kind of crazy, but we take it in stride, keep her medical history in a binder for future appt., and continue on with a little piece in the back of our mind to watch our little Bama very closely.
