Madison Grace was born on 10/28/2015 with several CHDs – critical aortic stenosis, endocardial fiber elastosis (EFE) leading to left ventrical dysfunction, parachute mitral valve, and patent ductus arteriosus.  We were lucky to have found out about Madison’s condition during an ultra sound at 34 weeks.  The day after Madison was born she had a balloon procedure for her aortic stenosis.  The procedure went very well, but with Madison’s EFE she struggled to regain heart function without cardiac IV medications.  It took a few tries, but we were able to find the right “cocktail” of oral heart medications so she could come home after 73 days in the hospital.  Along with Madison’s CHD, she had to get a feeding tube, she was in a brace for hip displaysia for 7 months, and has several "unique" features.  

Madison is doing fantastic and continues to hit new mile stones and show her sassy personality.  Since leavings the hospital she is completely off of her heart medications (as of March 2017), is starting to eat solid food, and is now crawling everywhere and pulling herself up. Madison will need further heart surgeries, but she is a true fighter and has proven time and time again – she will do things at her own pace. 

During Madison’s time in the hospital the staff became part of our family. We are so grateful to the doctors and nurses that cared for Madison.  We are also so grateful for our cardiologist who always has the realistic, but optimistic approach with Madison.  Please help us support the Children’s Heart Clinic Program.