Reading Carly’s story has proven that there are many “Queens” out there in the world of Congenital Heart Defects. Carly is one of them. Her spirit and strength are just as bright as her gorgeous red hair. For the past 19 days we have shared CHD warriors stories and every single one of those stories is completely unique. Carly’s story is just that. Her mom, Devin, has been so gracious to share Carly’s story with us. Warning: the cuteness is almost overwhelming.
“On May 27,2011, Carolynne Sue “Carly” Simmons was born. We were told that Carly was born healthy. When she was 16-18 hours old she started turning blue in the nursery. First, the doctors thought she had a heart mummer. From there it went to hole in her heart. We was transferred to WVU in Morgantown, West Virginia to find out Carly had HRHS (Hypoplastic Right Heart Syndrome). From WVU we was airlifted to UVA, in Charlottesville, Virginia. Here, we find out that Carly couldn’t get a shunt after having a catheterization the doctors found out that Carly’s coronary arteries pumped back in to her right chamber and the shunt would put too much pressure on Carly’s heart, which would cause her to have a heart attack. At 18 days old Carly was put on the transplant list as a 1-A . Carly was in UVA’s nicu for almost 4 months moved to the floor at 4 months old so mommy and daddy could stay nights with Carly. After less than a month on the floor, November 4,2011 at 9:45 pm we got the call. After only 4 and half months of being on the list.
The transplant only took 6 and half hours felt like 100 hours. Carly did great, her new heart starting beating on its own. 1 year and 2 months post transplant Carly has only had two stays at UVA both of which are due to Carly not wanting to eat solids yet. Carly has had 4 post-transplant catheterizations to check for rejection and all 4 have looked great. Carly is a little delayed, but she is picking up fast. She is crawling everywhere now and pulling herself up. In the last week Carly has stared eating solids more.”