Aubrey's heart

It dawned on me last night as I was conversing with some friends that I've never actually shared the details of Aubrey's heart abnormalities on here. It isn't that I don't like to talk about it-- on the contrary, every time I go through the defects she was born with, it reminds me of just how amazing it is that she is healthy and thriving-- but more that I've just never thought to. Well, here we go!

Within about a week or so of Aubrey's birth, we knew about 4 of the defects she has. It wasn't until she was almost 18 months old that we confirmed a suspected 5th defect via TEE. That was when one of Aubrey's cardiologists took the time to draw this very helpful [to us, anyway] picture contrasting a "normal" heart (on the left) with Aubrey's heart (on the right). It is, obviously, a somewhat crude drawing, but when I consider the handwriting of most doctors, I find it actually quite impressive that it's so clear and relatively easy to follow!

 click on the image to get a bigger view
 

I don't begin to fully understand all the defects, how they work together (because in some ways, certain problems actually are what allow her heart to work in its current state), or what the full implications are. I do know that Dr. Smith told us that day that if we were to walk up to most any resident physician in any hospital and begin telling them the laundry list of problems that Aubrey has, we would probably lose them at Defect #3 or so.

That's all I need to know to hug that girl a little closer, give thanks a little longer, and pray a little harder.

For those of you who know the jargon (or for those who would like to use Aubrey's heart as an interesting study in their homeschool *ahem, Lisa*!), here's the medical breakdown of Aubrey's heart abnormalities:

1. Atrial situs inversus
In other words: Aubrey's right atrium is where her left atrium ought to be, and vice versa. This is, however, not a "clean" switch: her pulmonary veins aren't all on one side of the heart like they should be, but are divided between both sides (see Defect #5).

2. Corrected transposition
Aubrey's left ventricle (the stronger one, which Dr. Smith tried to indicate with the extra squiggles to show more "muscle"!) is more associated with the pulmonary artery, but is connected to the RIGHT atrium instead of the left atrium in Aubrey's heart. Conversely, her right ventricle is more associated with the aorta, but is connected to the LEFT atrium. This means that the stronger ventricle, which normally pumps blood to the whole body via the aorta, is over-pumping blood to Aubrey's lungs while the weaker ventricle is trying (somewhat poorly) to oxygenate her whole body (thus her continually decreasing oxygen saturation level).

3. Ventricular septal defect (hole in heart)
In Aubrey's case, the hole in her heart is actually a good thing because it allows enough mixing of her blood that her right ventricle isn't completely stuck doing all the work that the left ventricle normally would do. From what I understand, there is such a flow of blood through that hole that it won't heal on its own-- and that's a good thing, as it's actually necessary to keep everything working decently enough to sustain her body.

4. Pulmonic stenosis
Again, forgive me for explaining so crudely something very complex (I am not a medical expert, that's for sure!), but if I understand properly, this is the narrowing of the pulmonic valve due to enlarged muscle. In Aubrey's situation, this narrowing was exactly the thing that allowed us to bring her home after 3 weeks in the NICU without surgery. Because her left (strong) ventricle is pumping blood to her lungs instead of her aorta, there was over-circulation taking place until the muscle built up and slowed down the flow of blood. You may recall that her respiratory rate was too high initially after birth; it slowed down on its own as the over-circulation slowed down thanks to this "thickening" of the pulmonic valve.

5. Partial anomalous pulmonary venous return
Instead of all the blood flowing from the pulmonary veins into left atrium, some of the blood flows from a few of the pulmonary veins into the right atrium, as well. (The image is small but if you look closely you can see that in the left-hand "normal" heart, there are 4 veins entering the left atrium; in the right-hand (Aubrey's) heart, there are two veins entering the "left" atrium, as well as two veins entering the "right" atrium.) This was the last defect to be confirmed and one that adds significantly to the complexity of correcting her heart, because trying to figure out how to get all the blood coming from her pulmonary veins into one atrium without overly intervening isn't simple.

All that to say, many of these problems on their own are extremely rare and complex (namely, Defects 1, 2, and 5). Combine them and you've got one unique little girl! She is a mystery to the medical world in many ways and, due to that, there is no "standard" approach to take. This is one of the many reasons I am so thankful that she has been so healthy, giving her cardiologists lots and lots of time to consider her and what will be best for her before needing to intervene.

Recently, I interacted with a girl who was born with a far less complicated heart abnormality. She is extremely small for her age and struggles with other health problems that are common side effects of heart disease. Sometimes I forget how amazing Aubrey's health is: she has been just about in the 50th percentile for growth ever since she was 2 years old. She's never had reflux or asthmatic attacks. She is developing exactly as any "normal" four-year-old would.

The truth is, it's a miracle Aubrey's alive.

Praise Jesus!