Twenty-two weeks into my pregnancy, Kiran received his first diagnosis: Tetralogy of Fallot (TOF). It is a critical congenital heart defect made up of four defects inside the heart. He has a Ventricular Septal Defect (VSD) which is a hole between the ventricles (the pumping chambers of the heart). This hole causes oxygenated blood and unoxygenated blood to mix. The aorta, which is usually above the left ventricle (which pumps oxygenated blood out to your body), is further right in Kiran’s heart, placing it directly above the VSD. This means that mixture of oxygenated blood and unoxygenated blood is sent out to the body. The third defect associated with TOF is a thickening of the right ventricle wall. The right ventricle pumps blood out to the lungs, and in Kiran’s case, it is pumping blood through smaller arteries. This means the muscle has to work harder, causing it to get bigger – much like muscles do when you lift weights at the gym. TOF also comes with a pulmonary valve defect. A post-birth diagnosis, pulmonary atresia, confirmed that Kiran’s specific defect is that his pulmonary valve simply didn’t form. Thankfully (and also, what made him more of a surgical challenge), his third heart diagnosis, Major Aorto-Pulmonary Collateral Arteries (MAPCAs) provided another pathway from the heart to the lungs.
I have written more than once about Kiran’s first diagnosis. Up until that time, everything had been going as expected with my pregnancy. I was ill all the way through my first trimester, I was gaining good weight, everything was looking good. We were making plans for a certain kind of life. We were excited.
The biggest thing his first diagnosis changed? Excitement, though still present, largely turned to fear. There were so many unknowns, including whether or not he would even survive infancy. The path we thought we were on changed drastically. The Before became the After.
It’s what a diagnosis does, really. Especially a big one like a heart defect. It marks a place in your life when everything changes. You are a certain person with a certain worldview, and it is all suddenly flipped on its head.
But what I’ve learned, as Kiran’s first diagnosis became a second and a third and now his medical chart is completely full of multiple diagnoses, is a diagnosis isn’t necessarily an ending. It can be a beginning, too. Each new diagnosis has helped us understand who Kiran is a little bit more. Who he has always been. They help us know the right paths to walk with him, the right therapies to try, or simply that we are already doing the right things for him.
The diagnoses. All in all, they have become a bittersweet thing for me. At times, when I am filling out paperwork and having to list them all, I both loathe them and am thankful for them. It is hard to see them all together, attempting to explain Kiran medically. A diagnosis can feel like a punch to the gut, like an ending, like a limitation. But it can also feel like a key to a door we need to open, to get the services and equipment he needs to live his best life.
Tetralogy of Fallot with Pulmonary Atresia and Major Aorto-Pulmonary Collateral Arteries. This may explain Kiran’s physical heart, but to know his metaphorical heart, all you have to do is spend one minute with him.