I am a BSN prepared Registered Nurse and mother of a child with a CHD. I was not aware that my son had a CHD when he was born. Only after a routine echocardiogram at a local hospital to investigate an allergic reaction to an antibiotic, I discovered that he had a murmur and was told that my son would need open-heart surgery to replace a valve. Our family ventured on the 3-hour trip to Children’s Hospital of Pittsburgh for more detailed tests and specialized care. My husband and I were blessed to meet with a wonderful cardiologist who answered all our questions and assured us that our son would not need surgery at this time. My son was officially diagnosed with bicuspid aortic valve and dilation of the aortic root. The cardiologist also informed us that the Children’s Hospital of Pittsburgh would be monitoring him closely, and the surgery would only be scheduled when his valve function or aortic dilation reached a critical point.
After receiving the diagnosis, we looked into the community for support and couldn’t find any! We did not know anyone who had experienced this or had this in their family. That is when I realized the need for a local organization to provide support, education, and awareness to the North Central PA area.