CHD awareness week

Let’s talk about CHD awareness.

The week of February 7-14 is CHD awareness week. If you run in the social circles we do, and even if you don’t, you may see a lot of posts on social media about congenital heart defects. That’s actually a pretty broad definition, since “congenital” means present at birth, and there is a wide, wide range of different heart defects.

The heart defect Namine was born with is known as double-inlet left ventricle heart defect, or DILV for short, which is classified as a single ventricle heart defect. A typical heart has four chambers. Namine’s top two chambers were flipped — the left on the right, and the right on the left; her bottom two chambers, typically separated by a thick muscle wall, lacked that separator.

Namine underwent three procedures at Children’s Hospital of Wisconsin in order to treat this condition. (Note that I don’t say “correct” or “fix”: there is currently no medical possibility to restore typical heart structure to a DILV patient. Modern medical science can, however, modify the heart and its surroundings to allow the patient to live and thrive.) She received the first procedure, a modified Norwood ?, at two weeks of age. She received the second, the Glenn ?, at six months. She received the third, a fenestrated Fontan ?, at five years.

Over the course of Namine’s life, she’s had several different cardiologists. The transition has not always been easy, but each one has done well by her and done their best. We have always been sad to see each one go. We know as Namine grows, she will eventually outgrow being seen at Children’s Hospital altogether. That won’t be for a while, but it reminds us of how quickly the time has flown by. Apropos of that, there is a saying I’m fond of:

“The days may be long, but the years are short.”

As another CHD awareness week comes, I’m reminded that not so long ago, Namine was being prepped for surgery. She doesn’t remember much of those days, since she was so young. In a way, we’re thankful that she doesn’t. But at the same time, we appreciate the reminder.

That reminder is why we still write on here, that Namine has come so far, remained healthy and strong. We also want it to be a message for those families who have not come so far yet. Medical technology has improved the lives of CHD patients worldwide, granting them the chance at a life that mere decades ago might not have been possible.

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