Trust But Verify

I've alluded to some anxiety during my pregnancy with Josie and here's the story plus the moral or teaching point or silver lining at the end. The tale goes on and on and while I hate scrolling scrolling scrolling, I hate vague nebulous narratives more, ergo I give you DETAILS.

When I was about 24 weeks pregnant in the late winter/spring, I had an ultrasound to visualize her back and spine which could not be seen due to her position at her ~20 week anatomy scan. That scan showed that one of the ventricles - cavities that contain cerebrospinal fluid that bathe the brain and spinal cord - was dilated compared to the other. Within the normal range but asymmetric. The attending maternal-fetal medicine physician ordered TORCH titers to rule out infection as a cause of this finding (minor abnormality versus normal variant). Of course no one wants to hear their fetus has a structural brain abnormality but I was not too concerned (after feverish googling). I went to the lab and had my blood drawn and didn't hear anything from the doctor.

At my return visit four weeks later, I received another ultrasound - mild ventricular dilation still there. Then the doctor scrolled through my labs and said:

It looks like you have toxo.

Perched on the exam table, the room bathed in the blue light of monitors, my stomach dropped with instant recognition of a potentially devastating infection. What? I stammered. How can that be? I don't have a cat, I haven't been ill, I don't have an exposure history... my mind was reeling. The doctor said, yes, you have a positive IgM and negative IgG for toxo. Then he left the room for several minutes and returned to say - 60% of these are false positives. We need to do confirmatory testing on your blood by PCR to confirm the diagnosis.

My mind was still spinning. The baby is normal size, right? No abnormal calcifications in the brain? No other abnormalities?

No, he said. I'm going to make you an appointment with the neonatologist to discuss these findings. And repeat the titers [if the IgG had become positive in the four weeks since the initial blood draw, that would have been compelling evidence of a true infection].

I called Luke, sobbing. And then it dawned on me that those results had likely been available for weeks - and I had not been notified. So not only was I terrified, I was furious. Furious that if the confirmatory test came back positive, my baby would have been denied potential treatment because that doctor had not bothered to check the results for weeks. Then I was furious with myself - I should have followed up on my results! This was my fault! ... no, I thought. I am the patient here. It's not my job to chase down (and interpret) my results. I AM THE PATIENT.

My repeat labs were drawn and I was instructed to have the confirmatory test - sent to a reference lab with a turnaround time of 2 weeks - the next day. Luke and I were able to speak to the neonatologist that day. That doctor, not the ob-gyn, called the next day to tell me that my repeat labs were unchanged (IgM positive/IgG negative), indicating this was almost certainly a false positive. I was relieved but very much wanting the more sensitive and specific test to prove that definitively.

At this point, I was very angry for several reasons. 1) Delay of potential treatment because of unacknowledged results 2) Being informed by the neonatologist not the gynecologist of the reassuring repeat labs 3) Why was this person, an expert in high risk OB, not familiar with interpretation of these results? such that 4) I was given an off-the-cuff but quickly recanted diagnosis of toxoplasmosis and 5) Being told 'it looks like you have toxo', 'toxo' being the lab colloquial term, akin to a doctor glibly telling someone with an STD, you've got the clap!

In my followup appointment two weeks later the gynecologist told me that my confirmatory test was still pending. And concluded the discussion of my probable false positive with 'people get so upset about these tests ['these tests' being false positives, with the example of a false positive screening test for Down syndrome]. At that remark my head exploded, but inside my head, because I was trying to maintain some decorum.

Another week passed with no word on my test result. I was leaving for 10 days in Michigan the next day so I went to medical records to access my lab results... only to see:

TEST CANCELLED. TEST REQUIRES WHOLE BLOOD. EMAILED DR X.

Then I completely lost it. A test with a turnaround time of two weeks had been cancelled three weeks ago. The doctor had told me the test was pending and now I see that he had been notified of the cancellation and once again did not follow through. After some frantic phone calls, my blood was re-drawn in two tubes, one for the usual reference lab and one for the specialty reference lab in California. When I returned from vacation, I went again to medical records... to see the results had not returned. A phone call to the reference lab point of contact and the answer was NEGATIVE. Times two. Case closed.

Several weeks after Josie was born I filed a complaint* and found out that that doctor no longer works at the facility where I was treated.

*It took a lot for me to do this, because I understand the incredible pressure that clinicians are under, with responsibility for hundreds of patients. However this pattern of negligence was beyond the pale.

I share this story a few reasons. One is my new disillusionment with healthcare delivery. You would think my naivete would have been dispelled long ago, but I have always had trusting, competent, thorough care. I've never felt compelled to micromanage anyone (this was also my first brush with potentially serious illness). Now I have a (healthy?) paranoia. The other is to urge you, readers, to be your own advocate and if possible involve a medically literate person in your health care to decipher and unpack medicalese which can be confusing at best and obfuscatory or even misleading at worst.

Silver lining: This scare luckily amounted to nothing besides psychological distress and Josie is perfectly healthy. I have a deepened empathy for those with real health struggles, or even more frightening, the health problems of one's children. Heartbreaking and heart-wrenching.

Moral: if you don't have a positive therapeutic relationship with your doctor, get a new one.

In closing, friends:

Probably an apocryphal quote but it works.

From now on I'm going to be the patient with the binder and the notes, and that's not a bad thing.

Of utmost importance -- with the exception of this one, no-longer-employed-there individual, I received exemplary care, from the physicians to nurses to front desk personnel to custodial staff.