Namine’s checkup was normal. But normal, as they say, is relative. We like to say “normal is a dryer setting,” because for us “normal” went out the window a long time ago.
Namine was born with a rare heart defect called Double Inlet Left Ventricle. A typical heart has four chambers: two at the top and two at the bottom. Namine’s heart was missing the muscle wall separating the bottom two chambers, which resulted in the oxygenated and deoxygenated blood mixing, lowering her overall blood-oxygen saturation level. Left untreated, she would quickly die.
Namine has undergone three heart surgeries to address this: the Norwood, Glenn, and Fontan. Her heart, as it exists in its current state, is stable and healthy. She is able to participate in the activities she loves — basketball, tennis, ballet, and more — with no risk to her heart.
With such drastic surgical changes to her heart, she is monitored closely by the Children’s Hospital cardiology department, having a checkup every six months. The potential risk of a sudden change for the worse is very real and ever-present, after all.
Despite all she’s been through, Namine’s heart continues to be healthy and strong. For the present, she’s been given a clean bill of heart health by her cardiologist.
At this appointment, however, we learned something new. According to Namine’s cardiologist, patients of the Fontan — her third corrective heart procedure — are at a higher risk of getting liver cancer. He explained that this is due to high blood pressure created by the procedure.
As an aside, I want to mention that Namine’s Fontan procedure was actually called a “fenestrated Fontan” — fenestrated meaning they deliberately left a hole in her heart to relieve blood pressure.
Ever since the Fontan, the cardiology department has kept an eye on Namine’s liver in addition to the “normal” (there’s that word again) heart-related things. We never knew why; now we do.
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