When you find out your unborn baby has a congenital heart defect, there is a period of time during which you haven’t yet internalized what the doctors are telling you. Over time — and the time will vary by individual — you understand what it means for your child’s life.
After twelve years, it’s safe to say we understand Namine’s heart and what she’s needed. There are still things we’re learning about her heart defect, however (like angiogenesis and collateral blood vessels). One of the relatively newer concepts to which we’ve since been introduced is the occurrence of liver cancer in heart patients.
Namine’s heart has steadily remained in good health and condition since her third and latest heart surgery, the Fontan. She’s still seen twice a year to make sure her heart is still healthy. Even though Namine’s health has been stable, we must remain proactive and vigilant. Post-Fontan patients like Namine have the potential to develop complications (and it can happen so quickly). One such complication is liver disease; for that reason, Namine had a liver ultrasound.
Namine’s cardiologist was pleased to tell us that the results are good. There is little concerning about the results of the tests they ran. He did tell us again that they — by which he meant medical professionals — are still learning about DILV, so he will continue to monitor her test results as she grows.
Each patient is different, and so each patient will have slightly different numbers. There is a baseline, but everyone has a different normal, so to speak. Namine’s normal is her own — as we’ve seen in other aspects of her life — so it is crucial that her doctors continue to monitor her medical trends in order to better understand her conditions.