Comfort, convenience and cost

My rant of the day is about doctors again.

We are currently processing the disturbing information from all the various specialists that


a) If John really had what the doctors at the time all said he had, then this baby probably will have it too, and it could likely be more severe (including fatal)

b) If that is the case (that this baby has the condition, called NAIT), then we could use a therapy (weekly IVIg) that has been shown to be reasonably effective (improving the situation in >80% of cases where used in clinical trials). However, no doctor is willing to approve this therapy for me because our lab tests are "inconclusive" that John really had this, so the treatment is "inappropriate" without a concrete diagnosis.

c) So, we can opt to trust the doctors who are now all backpedaling and saying John probably never had NAIT; nothing to worry about. No treatment needed. But, by the way, we think you should have a C-section, "just in case."

d) Or, we can demand the IVIg therapy. In that case, the doctors tell me, we will probably face paying for it ourselves, since they can't give a "definitive diagnosis" of its medical necessity. This is daunting. (I have heard $2000-$3000 week until the birth). And I am left not sure whether all the doctors really don't think we need it, or just don't think we need it definitively enough that they want to stick their neck out with the insurance company and demand payment. So, they are instead apparently trying to talk me out of the whole idea.

The first doctor explained that she wouldn't recommend IVIg, because it could be inconvenient and expensive. And John's case of NAIT was mild, so this next baby was unlikely to have a very severe case, either. When I questioned her a bit further about why not IVIg "just in case," , she responded with a dumbfounded tone of voice: "You mean you want the IVIg?" (No, I didn't say I want the IVIg, I said I wanted her to be more convincing that it wasn't worthwhile in my case. Because if it might be, I want to do it.)

The next doctor just categorically refused the IVIg for me. "I can't give you that without a diagnosis of NAIT. What we have now is a good theory, but without confirming lab tests, it is just a theory. There is no proof that John had NAIT at all"

So now, I am pressing the third doctor: "What would be the disadvantages in taking IVIg, on the chance that it would help this baby?" Now I start to get the really obnoxious quotes, like, "Well, the treatment is really INCONVENIENT and UNCOMFORTABLE and (in a whisper:) expensive." Now come on, which do you think the doctors are most worried about? As if pregnancy itself isn't inconvenient and uncomfortable. Try a bit harder, huh, doc?

Can you tell that this just made me mad? Maybe they think, because I am balking a bit at an automatic C-section, that I am just a medical wimp. I don't believe this to be the case.  I have had surgery for ectopic pregnancy, twice, including one ruptured tube and one ovarian torsion. I have been through IVF twice. I was hospitalized for ovarian hyperstimulation from the IVF. I have been through 3 unmedicated vaginal births. I have been through a "normal" miscarriage. So, I understand INCONVENIENT. I understand UNCOMFORTABLE. I even understand EXPENSIVE. What I am not yet convinced of, though, is whether any of my doctors understand APPROPRIATE BALANCE OF RISKS. With MY BABY.

Obviously, it is now time for me to let go for a while. Back to prayer. Turn it over to God. I certainly can't turn this one over to the doctors.