01/23/2020, it was a Thursday afternoon, I was 20 weeks pregnant with my first child. My husband was so excited to see what we were having. After confirming it was a boy the ultrasound technician continued her exam and when she got to the heart she told us she needed to step out and go get someone else. We were concerned, but at the time didn’t think much about it. Another more experienced technician came in and told us that our son had a hole in his heart and what appeared to be Tetralogy of Fallot. She told us that we needed to have an Echocardiogram is done by the feral cardiologist as soon as possible, which ended up being the next morning. I remember the drive home being one of my worst days, I could not stop crying and doing research, thinking of everything that he could be dealing with in his life and the multiple surgeries that he would need to save his life.
The echocardiogram diagnosed him with Transposition of the Greater Arteries, Double Outlet Right Ventricle, And a large Subpulmonic Ventricular Septal Defect. I spent the next couple of months of the pregnancy in a constant state of worry. It was filled with research on different hospitals and what would be best for him. When he was born, we found he was misdiagnosed in utero. Our son spent 13 days in the Neonatal Intensive Care Unit with surgery at 22 hours old unrelated to his heart, and we were finally able to go home.
After multiple ECHOs his new diagnoses were Large Subpulmonic Ventricular Septal Defect, Right Circumflex Aortic Arch, Vascular Ring, and Criss Crossed Pulmonary Arteries. We had our son home for a month. He coded in my husband’s arms at 6.5 weeks old. I performed CPR on him as we drove to the firehouse. I was able to get him breathing again… he was alive. Once in the ER he coded again. They intubated him.
After numerous tests and studies, they found that the left part of his vascular ring did not have blood flow to it and therefore was cutting off his trachea and esophagus, he went from 8.6mm to 1.98mm at the location of the ring. We transferred hospitals. He had open-heart surgery on 07/20/2020. He was extubated the next day and had an amazing recovery. We spent 25 days in the hospital and found out that his right vocal cord was paralyzed. He has since recovered from that and is working on strength of the cord.
He is almost 8 months old and is the strongest human I know, he is happy, mostly healthy, and you would never know he’s been through so much. We take our CHD Awareness Wubbanub Bear with us everywhere we go to help raise awareness of these birth defects that almost took our son’s life and others.