10/25/2024
💜Anna Joy💜 Our strong, brave girl was diagnosed with Hypoplastic Right Heart Syndrome prenatally. At birth, Anna was transferred to Nemours Children’s Hospital in Orlando for a planned catheter procedure to place a stent in her heart. She underwent the procedure at 10 days old, but the stent placement failed. There were many other complications that followed, and her medical team discovered that she has a severe form of Coronary Atresia which was not detected on her previous imaging. Her diagnoses together made her a poor candidate for surgery and it would be very risky to let her go home if they did decide to operate.
We were transferred to UF Shands Children’s Hospital in Gainesville on September 6th and began the transplant evaluation process. In the meantime, Anna had open heart surgery to correct the issues from the catheter procedure and to place a ventricular assist device (VAD) to take pressure off of her heart while she waits on transplant. Anna was officially listed for transplant on September 12, 2024.
We’re glad to have answers, but know that this process is going to be long and difficult. We’ve been told to plan for her to be in the hospital waiting on transplant for 6-12 months. Obviously we have so many mixed emotions, but we are doing all we can to give our girl a chance at living a normal life.
