- Kaitlyn Marie was born August 25th, 2011; a beautiful, happy baby. Little did we know what would soon transpire. September 16th she woke not wanting to eat, looking pale, and grunting. As the morning progressed, she got worse. We had an appointment with a pediatrician (her pediatrician was off that day). When we arrived, they took us to a room where the nurse check her vitals. She then checked her oxygen levels, left and came back with the pediatrician. She looked and listened to her, then left and came back with another pediatrician. They both left the room and a few minutes later came back and told me that they were calling an ambulance to take us to Children's. When we arrived at Children's ER, they stuck, poked and prodded on her. They did a spinal tap to rule out meningitis (which was negative), next they bring in a cardiologist to do an echo. It seemed to take FOREVER. When he was finally finished, he came over to talk to us. I remember him saying "multiple heart defects" and I felt like my world was caving in on me. I saw his mouth moving, but was unable to comprehend what he was saying. I remember following her as they pushed her through the doors to the PICU, leaving us in the waiting room. It was like a bad dream; I kept waiting to wake up. The next day the cardiologist came back to talk to us again. He told us that what she has is called Shone's complex. Basically, it's when there are multiple defects in the left side of the heart. Kaitlyn has: coarctation of the aorta (repaired at 5 weeks old), Bicuspid Aortic Valve, Hypoplastic ascending aorta, mitral valve stenosis, fenestrated atrial septum and multiple ventricle septal defects. Basically, her aorta is too small and had a narrowing in it that was repaired (5 weeks old) by cutting it out and suturing it back together. Her mitral valve is small, her aortic valve has 2 leaflets instead of 3, and she has holes in her heart, some of which cause too much blood to go into her lung arteries. She has a band placed on her pulmonary artery to help control this (also placed at 5 weeks old). We were told when she had the surgery that she would get a year, at best, out of the band. She's 2 and has not had it removed, but will be facing surgery to remove the band and close holes in the near future.
Kaitlyn is just like any other 2 year old. You'd never know by looking at her that she has a congenital heart defect. She is right on track developmentally. She loves to color, play doctor and play with her dolls. Her favorite characters are Doc McStuffins, Minnie Mouse, Sophia and Cinderella. She likes to go outside and swing. She is curious and very smart. She has 2 older brothers that are wrapped around her finger and has a baby brother that she adores! She is a very loving little girl! She gives the BEST hugs and kisses and can always get out trouble by saying "sowwy, wuv ouu"!