I received a call from our Maternal Fetal Medicine group on Monday. The woman I talked to was very nice, chipper, perky...the whole nine yards. She called in reference to my first trimester screen. Specifically, she called to verify whether or not we had a child with Down Syndrome. I'm probably the only person who will answer that question with "we don't know for sure." I mean, how many people don't know whether or not their kids have Down Syndrome. I explained to her that Gracie was stillborn and that Down Syndrome was heavily suspected for multiple reasons by our OB doc, as well as by the MFM doc that I consulted with between pregnancies. She asked if chomosomal analysis had been done, and I told her that it had not. She, of course, asked why it had not been done. I told her that, as much as we were able to determine with lots of backtracking, there was dropped communication between parties in the hospital regarding the fact that our insurance would pay for the analysis, and that my placental tissue was ultimately never sent out from the lab. She sounded stunned by this information.
She then went on to say that she was calling my OB office to have them refigure the results of the first trimester screen since they apparently ran the screen with us listed as definitively having a child with Down Syndrome. She stressed that they needed to have accurate screen results, and followed that up with "keep in mind that your blood work is still really abnormal." I told her that she didn't really need to bother with refiguring the results, as we weren't going to do an amnio or CVS, regardless of the new results. I told her that we were going to see them for a level 2 ultrasound at 20 weeks, regardless of the results of the first trimester screen, because of our history and that that had been decided before the first trimester screen was even done. I emphasized that the results of the first trimester screen were not supposed to have even been forwarded to them, since it was a moot point. The conversation went in circles from here for about 5 more minutes before she finally told me that we shouldn't bother doing the first trimester screen in subsequent pregnancies if we weren't planning to do an amnio or other definitive testing to diagnose abnormalities prenatally.
The whole conversation left me scratching my head and feeling a little disconcerted. I was kind of bothered by her final 'instruction' to not do the first trimester screen in the future if we weren't going to do any further diagnostics. It is our right to do the screen, for whatever reasons we choose to do it. It is our right to decline invasive diagnostic testing based on the results of the screen (which were, apparently, skewed in this particular case) for whatever reason we choose to decline them. It is our right to have a level 2 ultrasound during subsequent pregnancies, based simply on the fact that we have a history of fatal placental insufficiency and IUGR. It is our right to not really care about the refigured results of the screen. Why can't they just leave well enough alone?
Hoping that the remainder of the pregnancy does not go this way.....