Our CHD Story

How an ingrown toenail lead to us seredipitiously finding a heart defect.

Cameron has suffered from ingrown toenails most of his life. His toenails are poorly shaped at the nail bed and I've been able to keep them under control for the past few years. But after a scheduled visitation with his father, he cam back with a badly infected toenail. The infection was up to the second joint in his toe and he was put on antibiotics and referred to a podiatrist.

A week of two went by and we met with the incredible Dr. Cypher and he said that Cameron needed to have a small procedure to modify the toenail bed on each big toe. Because of his age, this would need to be done at a surgical center and he would need to be put under general anesthesia. This required being cleared by his primary care physician - no big deal. Cam's a "typical" healthy, vibrant, boisterous four-year-old and we have not had any medical concerns, so I was not worried.

At his primary care appointment, Dr. Sophie heard a slight murmur. She asked if I had ever been told by any previous doctors about any heart concerns. We has just moved back to the Lower Eastern Shore from New York. Cameron's father and I divorced amid the COVID-19 crisis and we were in the process of starting over where I grew up. I had only had one previous visit with an NP at this office and had not had any indication that something was amiss with his little heart. Dr. Sophie mentioned that she heard a slight murmur and that it was very possible that it could be nothing but she wanted him to have an ECHO just to make sure everything was okay. Cam was given an appointment that was in a few days and went on our way.

My mom took Cameron to his ECHO. He was excited to see his heart on the screen and the technicians were wonderful with him. They confirmed that he had a murmur but did not elaborate.

Two days later I received a call from a cardiologist from Children's National in Washington, D.C.. He was very direct and to the point and said that Cameron had a sizeable hold in between the upper chambers of his heart and his mitral valve had a cleft in it. This would 100% require open heart surgery and they wanted to get him to their outpatient screening facility to additional scans and meet with their team to make a plan.

May 16th we headed to Children's National, met with their team and made out plan. My oldest BFF bought him a Captain America outfit to wear - which he did and loved every second.

Cameron was officially diagnosed with Atrioventricular Septal Defect (AVSD) with a Cleft Mitral Valve. Three of the four chambers of his heart are enlarged due to the excess bloodflow/backflow and there would be a high probability of sudden death in his teen/20's due to the severity and location of the defect. His surgery was scheduled for July 15th and we left with answers to questions and a new found peace that while this is terrifying to us, it is fixable and I am grateful to be able to fix something in my child that another mother did not have to option to do.