Namine has been doing well enough for a few years now, so her cardiologist, Dr. Block, has been content to see her only every six months. Today it was time to go back and see him — but first, Namine had to have an echocardiogram: essentially, an ultrasound to get a look at her heart.
When we spoke to Dr. Block, he told us that the echo looked good. The Fontan is holding well, and Namine’s vitals are all strong. Namine herself has no complaints, outside of recent headaches, which may or may not be related to her heart medication.
Heart patients do often experience headaches due to their medication. About three years ago, Namine experienced headaches due to her heart medication. Her cardiologist switched her from enalapril to lisinopril, after which the headaches went away. Whether these recent headaches are related to her medication, we don’t know yet.
I want to circle back to the Fontan, if you’ll indulge me for a moment. Dr. Block said that according to the echo, it is holding well. We take it for granted, probably especially because all of Namine’s heart procedures have been, and I quote her surgeon, “perfectly textbook.”
The Fontan itself was the third surgery in a three step process to get Namine’s heart to a point where it would be able to support her. The fact that she’s in baseball, tennis, basketball, and dance? All possible because of the modified Norwood, Glenn, and Fontan procedures.
This is a comparison between a normal heart and what Namine’s looked like when she was born. The normal heart has four chambers. The blue is deoxygenated blood, to be pumped to the lungs for oxygenation; the red is oxygenated blood, to be pumped out to the body. In a double inlet left ventricle (DILV) heart, there is no muscle wall separating the two bottom chambers, and the top two chambers are flipped. As you can see, the deoxygenated and oxygenated blood mix. This lowers the overall blood-oxygen level, causing desaturation, which in turn can cause tissue and brain damage, fluid in the lungs, and death.
This is what Namine’s heart looks like now, post-Fontan procedure. Her heart no longer receives deoxygenated blood; instead, it bypasses the heart and is taken straight to the lungs using her body’s own natural blood flow. She no longer desaturates, and she is able to participate in physical activities without it being a risk to her health; her participation in basketball alone is testament to that, not to mention the other sports she plays. In fact, she and I are going to join thousands of others in Al’s Run this coming weekend. (Shameless plug: you can still join our team!)
All good news aside, the fact of the matter is that Namine’s heart is still fragile. DILV is an extremely rare disorder, and much is still not known about what causes it. Namine’s heart still needs monitoring, so she sees her cardiologist every six months. And so far, her heart is still healthy, and for that, we are thankful.