Tetralogy of Fallot

     At this point, you may be wondering what Tetralogy of Fallot (Tet) is. If you have a medical background, you probably already know about it. So I am going to do my best to keep this explanation as simple as possible for everyone else.

     Tet is a set of three heart defects that work together to cause a fourth. In a normal heart, the right ventricle pumps oxygen poor blood to the lungs. In a tet heart, the vessel leaving the heart is too narrow, and there is a hole in the heart wall. When the heart beats, some blood is pushed through the hole instead of taking the vessel to the lung. This oxygen poor blood enters the left ventricle, usually reserved for oxygen rich blood, and is sent to the body. The end result is low oxygen levels in the blood.

     Additionally, the aorta is positioned improperly in Tet babies, which causes more oxygen poor blood to end up in the body. Early results indicate that G doesn't have this defect, so to be honest I haven't yet taken much time to learn about how it works.

     To compensate for low oxygen levels in the body, the heart muscle thickens. This sounds like a good thing, but unfortunately it damages the heart muscle over time. This thickening is the fourth defect.

      Babies tend to have skin with a blueish tinge, especially around the mouth, as well as rapid breathing, and sweating while eating. During periods of stress, such as after crying, eating, or pooping, oxygen levels in the blood can drop dramatically leading to "Tet spells." These can be very dangerous. As far as we can tell, G has not had a full blown Tet spell. He doesn't seem to have many problems eating or pooping, but can become reddish-purple when he gets very upset. Our job to try to keep G from becoming excessively worked up.

     All Tet babies must have corrective surgery. Without treatment, 25% of patients will die within the first year, and 75% will die by age 10. Only 5% will survive to age 40. With treatment, odds of survival increase dramatically. In fact, most children go on to lead normal, healthy, active lives.

    If you have Googled this condition, you may have come across a statistic claiming only 91% of treated Tet babies survive until age five. 91% may be a good score on a math test, but it is terrifying in the context of my child's well being. The specialist assured us that many of the fatalities are in children with more serious anatomical anomalies than G has. His odds of a good outcome are much better. 

     The cardiologist advised us to cruise the internet - the opposite advice of every other health care provider I have ever met. An excellent resource is http://www.cincinnatichildrens.org/health/t/tof/ They have a video that explains the disorder very well.

     When a loved one has a health problem, we tend to become experts overnight. It has been strange to hear my husband throw around vocabulary like "pulmonary artery" and "stenosis" and "ventricle" in regular conversation. One day, we will need to explain to our son why he has a scar, and why he needs to visit the cardiologist every year. Perhaps by then we will have enough experience explaining Tetralogy of Fallot that we will be able to find the words to help him understand.