Cardiology appointment

We met with Namine’s cardiologist to discuss some concerns.

Aragorn voice: "The day may come when doctors listen to us, but it is not this day!"

Actually, that’s not completely accurate. Most of Namine’s doctors do trust us — including her heart doctor — especially since we have the benefit of over ten years of experience. Unfortunately, that’s not always the case, as evidenced by our recent experience with Namine’s dentist.

“Wait a minute, Paul,” I hear you say, “isn’t this post about a cardiology appointment?”

Why, yes it is, dear reader. Bear with me a moment.

When Namine was seen by her dentist for the first tooth extraction, he tipped her far back in the chair. He does this for every kid, and for good reason: it affords him a more comfortable position from which to do whatever it is he needs to do. Most kids don’t have a problem with this, but Namine is not most kids.

Namine’s recovery from that first extraction was brutal, and that’s putting it mildly. It took her three days to feel more like herself. She was nauseous, she threw up repeatedly, and had an all-around bad time of it. The on-call staff told us that nausea often came part and parcel of getting teeth pulled, so we should just roll with it. The dentist told us that it might also be that Namine was getting sick.

We had another theory, however. During the procedure, Namine was tipped so far back that she was upside down. She’s a heart patient, but there’s more to it than that. She was born with a heart defect known as Double Inlet Left Ventricle, leaving her with the top two chambers flipped and no muscle wall between the bottom two chambers.

Namine has had three corrective procedures to give her as normal a heart as science can provide: a modified Norwood, Glenn, and fenestrated Fontan. With these procedures, Namine’s heart is not responsible for pumping both deoxygenated and oxygenated blood. (You might recall from biology that deoxygenated blood goes to the lungs for reoxygenation, while oxygenated blood goes throughout the body, providing oxygen.)

Namine’s heart is only responsible for pumping oxygenated blood to her body. The deoxygenated blood bypasses her heart completely, going straight to her lungs for oxygenation via natural bloodflow and gravity.

That last one — gravity — is important. Because it is not the heart but merely gravity which is responsible for moving half of her blood, it takes her much longer to recover from being upside down.

We posited this theory to the dentist. He brushed our concerns aside, insisting that it was a combination of a reaction to getting the teeth pulled and the medication.

Now that you’re all caught up, we suggested this possibility — that Namine got nauseous due to the nature of her heart — to her cardiologist. He agreed with us, and went on to say that it took her days to recover because half her bloodflow relies on gravity. He said he wouldn’t expect any post-Fontan patient to do well with being tipped upside down.

In fact, according to Namine’s cardiologist, there is a name for it: venous congestion. In heart patients, it is a serious complication that can lead to swelling, the stop of blood flow, and yes, even death. So you know, just FYI, don’t tip post-Fontan kids upside down.

It’s frustrating when a doctor treats us like we don’t know what we’re talking about. I realize that there must be plenty of those types of parents, but we’ve been taking care of Namine for over ten years. We’ve paid attention to doctors, participated in rounds (as much as possible when she has been admitted), and studied her unique physiology to better care for her. Fortunately, Namine’s cardiologist has our back. He’s encouraged us to contact him if the dentist throws us shade again.

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