“Before Addelyn was born, we learned she had a very rare diagnosis of Chromosomal 6q26q27 Terminal Deletion due to excess fluid being found in her brain during her anatomy ultrasound. We were told there were maybe 15 documented cases, and any more info felt impossible to find. In the weeks leading up to her birth we still couldn’t find any helpful info. The doctors checked for everything but it all seemed ok except for her brain. August 2019, on the day she was born, she came out as the bluest baby I’d ever seen. She was given a few bagged breaths and was stable, so my husband followed as they whisked her away to the NICU. Phone service was terrible in the hospital, and a couple hours later he returned with a great report, however two days later in the NICU, her new day shift nurse told us she heard a murmur but couldn’t convince her doctor to listen. Two more days passed and she finally convinced him that Addelyn needed an echocardiogram done and a VSD was found in her heart. We had no idea what it meant, but a resident student noticed the fear in our faces and drew a picture for us as the NICU Doctor explained everything. The next day they let us bring you home with a laundry list of specialists to schedule visits with. We were so terrified, but were oh so grateful to make the 4 (that easily became 6) hour drive home to our small town.We took some time and then scheduled a visit to the cardiologist, among other appointments. A couple months later we were about to take big sister to see family and begin the 2 hour drive to her first appointment but her brain had other plans and she began having epileptic seizures for the first time and was flown to the children’s hospital instead. We were so anxious to learn about her heart but had to wait a few more weeks, and I still remember it like it was yesterday. Just Daddy, Addelyn, and I wrapped you up in your white swaddle blanket as instructed, with your arms pinned down, and sat in complete silence as they analyzed and took pictures of your beautiful heart. Minutes later the cardiologist came in and told us of his concerns that your VSD had not yet begun closing and that surgery could be needed, but that he would share her story with his colleagues in fear it could cause further damage because of all the unknowns from her chromosomal abnormality. The echo had put her to sleep, so I carefully dressed her and carried her to our car, where we sat in the back seat with you for a while before beginning the drive home, because we felt numb. Another surgery (her first being on a lower area of her body), but on a very vital organ in her body. We were scared and cried. 5 months later we went to her open heart surgery consult appointment where we met the team who’s life you would depend on in the OR. We had prayed for your surgical and medical teams from that points on and without their abilities, I don’t think we’d be this far with her. We can’t imagine our family without her, and I thank God Everyday for her. And, to top it all off, before the surgery her VSD was estimated to be about 4.5 mm wide, however when they got to her heart, it was actually 9.5 mm wide. At 9 months old, that’s almost the average size of her aortic valve, which is about 10 mm! We love this angel. Without her, Big Sister would be so lost.” – Malia and Reagan, Addelyn’s parents, October 2019.