I was born March 1st 1989. Right after I was delivered the doctor shouted “It’s a girl! And we don’t know what’s wrong with her.” There was one layer of skin covering my chest, my sternum was not properly developed. The condition is called a cleft sternum.
They immediately took me into surgery. They quickly discovered I had Tetrallogy of Fallot. This is a congenital heart defect where 4 major things are wrong with the heart. There was a hole between the two lower chambers (ventricular septal defect, VSD), an overriding aorta (the aorta sits between the lower chambers instead of on the left side), hypertrophy of the right ventricle and right ventricular out flow tract stenosis (narrowing). I also had a hole between the two upper chambers (atrial septal defect) and my coronary arteries (the vessels that supply blood to the heart muscle) were developed differently. Because of my defect my body wasn’t getting enough oxygenated blood. Leaving me cyanotic (blue), fatigued easily and unable to eat enough food to nourish my body and grow. Right after I was born, since I was an infant, they could only do so much to my heart because of its size. I was in the hospital for months with tubes and wires attached to me all over my body. The doctors told my parents to prepare for the worst.
I came out of the first surgery alright. I was able to go home. But two weeks after I went home I was back in the hospital as a failure to thrive baby. I didn’t have the energy to eat long enough to nourish my body. So I was placed with a feeding tube. My mother would *** feed me until I got tired. She would pump the rest and put it in the feeding tube. This solved the problem and my feeding tube was eventually removed. The doctors knew I would have to have another surgery to fix the rest of the heart issues and told my parents they would know when it was time.
At 15 months old I started to have “tet” spells where I would cry and then faint from it because my body, again, was not getting enough oxygenated blood. I would also turn blue. It was at that time they did my second surgery to close the holes in my heart.
I am now a thriving 26 year old woman who is engaged and training to be an echocardiogram technologist. I have to follow up with my congenital cardiologist every year to see how my pulmonary valve is holding up. There may be a future surgery to repair or replace the valve depending on how dysfunctional it becomes. But right now, my fiancé and I are living life to the fullest and plan to continue to do that. I am also passionate about helping others with heart conditions. If anyone has any questions or would like to vent about what they are going through, I would be happy to chat with them! Please feel free to contact me email@example.com.