The heart of the matter

Noncompaction cardiomyopathy.  To be more exact, left ventricular noncompaction cardiomyopathy.  Big words that don’t mean a lot unless it’s your baby girl’s heart that has this ‘condition’.  It’s not a disease nor is it an infection.  It is a ‘condition’, which really doesn’t adequately describe the devastating effects.

The pathology report on her old heart shows the left side of Addison’s heart just didn’t develop properly.  While the entire heart is obviously pretty important, the left side can be considered the most important…though it’s kind of like ranking which eye you’d prefer to give up, there really is no good option when it comes to heart failure.  The left side is the main pumping chamber and supplies blood to the rest of the body.  In Addison’s case, the muscles stopped growing and didn’t ‘compact’ as they are supposed to in the second half of pregnancy.  I’m giving it to you in the simplest forms because the medical jargon can unnecessarily complicate the heart of the matter.

It is a rare condition and one that is not well understood.  Often, noncompaction cardiomyopathy is misdiagnosed.  It is not even classified by the World Health Organization yet.  There is some research that shows it could be genetic, but that’s not clearly defined either.  Though it answers the question of why Addison got so sick, there are still many more questions.

For now, I’m focusing on what’s important – Addison has a new heart and she’s doing so well.  Really, I guess at the end of the day it doesn’t matter what led us down this path.  No sense looking behind you when there’s so much still ahead.

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PS I’m including another cute picture slideshow.  Addison is getting lots of quality time with her Lao-lao and Gong-gong.  She particulary likes it when Gong-gong sings his special tunes, though he is a bit paranoid about the whole imuno-suppression thing…he thinks wearing a giant blanket bib will protect his granddaughter from his germs!

Oh yeah, almost forgot…Happy 8 week birthday baby girl!

Love,

Elaine, Aaron and Addison

5 thoughts on “The heart of the matter

  1. So it IS noncompaction cardiomyopathy!!!!!!!!!!! That is crazy…. really, really crazy!!!!!!!!! God, who’d have thought!!!!!!!!! Although there is still not definite HOW/WHY, etc……at least there is a name to it, right?

    I just LOVE the pictures. Addison is sooo precious. Her eyes are soooooooo big and curious! It’s melts my heart seeing the pics of mommy and daddy with her (lao lao and gong gong). I LOVE the one of Lao Lao holding Addison and she’s smiling at Gong Gong……. JUST PRECIOUS!!!!!!!!!!!!!!!!!!! I’m surprised daddy doesn’t wear gloves and use hand sanitizer too!!!!!!!

    I hear mommy is sad cause she has a cold so cannot see Addison…..

    I better be super healthy in my 10 days back in the summer!!!!!!!!!!!!!!!!!

    Love you, E!!!

  2. Oh, those big round saucer eyes. We are all thinking of you, Elaine – some of the girls were tearing up during our last warm-up. We’re rooting for a comeback from your little trouper.

  3. I remember reading the report after Grace had her transplant. WOW how beautiful is she. you can see how much she has grown already. Take care. Time to start a support group for moms. Great job guys.

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