Jeremy and I had a phone consult with Dr. F on Wednesday morning. That put me back in the "discouraged" camp.
Dr. F had in fact emailed Dr. Berkowitz in NYC with a very brief summary of our case (which she cc'd to us). She told us that he then phoned her about 10 minutes later and they talked, and so now she was reporting to us on his recommendations. This was less than satisfying, because this way we really have no way of knowing exactly what was communicated to Dr. Berkowitz about our case. I had assumed that we would be a part of that consult with Dr. Berkowitz. While I really liked Dr. F and her approach, all that she knows about our case is the case notes she read from the other doctors in her practice, and a 5-minute office visit with us. I am therefore not confident that she herself had all the information to pass along to NYC.
In any case, Dr. Berkowitz's recommendation, according to Dr. F, is not that different from where we were:
1) No IVIg medication.
2) At delivery, he recommends either (a) cordocentesis at 37 weeks to determine platelet count and then decide on c-section or (b) just do a c-section
His rationale is based in part on the fact that he is not himself convinced that we had NAIT with John, since the lab tests don't prove the genetic mismatch between Jeremy and me. But, he offered no alternative diagnosis for John's symptoms, either. Granted, he is in maternal-fetal medicine rather than pediatric hematology, but still, it is an answer that feels incomplete to us.
I spent Wednesday feeling very unsettled and disappointed. This is not a diagnosis/treatment plan that reassures me that either our baby will be fine, or we are doing everything we can to ensure that. Rather, it strikes me as a plan that is easiest and cheapest for the doctors to make.
After all, if there is a real risk, then why not deal with it with the IVIg? If there is not a real risk, then why subject our baby (and myself) to the increased risk of a C-section (and possibly cordocentesis)? Yes, I know, C-sections are "routine" for OBs, but I don't consider them such. Of course, I will have a C-section if that makes sense, but it is not a "neutral" treatment choice.
After some thought, Jeremy and I resolved to wait the two weeks for our consult here in GR with Dr. C, one of the pediatric hematologists who treated John. Hopefully, he can at least shed some light on this rapidly growing theory of the maternal-fetal-medicine docs that John never really had NAIT in the first place. It would be nice, but it sounds almost like a theory of convenience rather than evidence at this point. Not a standard upon which I wish to base my baby's care.
After that consult, we will have to decide on the next step. Dr. F. did offer that we could email Dr. Berkowitz directly, if we wish. I think we will wish, but perhaps it will be easier once armed with more info from Dr. C.
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