I am in a very weird space--I know that the results of the screening test are not great, but I am trying not to stress about it. After all, it's just a screening test. Plus, the nuchal fold measurement was actually fine--it's the blood tests that came back wonky. The blood tests, by themselves, are only 60% accurate at predicting Downs.
I have been having a hard time reconciling the "85% (or so) accurancy" of the NT scan plus bloodwork with the 1/160 chance the genetic counselor gave us. I was trying to figure out if that meant that our chance of this child having Downs was 85%, and if so, where that left us in terms of the 1/160 number (because in that case, shouldn't the number be 85/100?). What the counselor told us is that the "85%" stat refers to the fact that if 100 cases of Downs were considered, the NT scan plus bloodwork would flag 85 of them as being at risk for Downs, and would fail to identify the other 15 as being at risk for Downs. So, the test essentially flags 85% of the cases that it should flag that are actually Downs. However, it also flags a lot of other cases that WON'T be Downs, which is why my stat is still 1/160, and not 85/100. She said that her hospital screens anyone with a risk of 1/260 or greater as "positive" for being at risk for Downs.
I am still a little confused about that 85% stat, because the three pregnancy books I have seem to have a different definition of what that stat means than what the genetic counselor gave me. Frankly, I prefer her definition. The books all seem to suggest that tests are 85% (or so) accurate at actually indicating a baby that has Downs. I hope I'm wrong. If you have a link or a book that clarifies, please send it along to me. You know I am an information whore, even if it's not positive information.
We weren't able to get scheduled for the CVS on Wednesday, as we'd originally hoped. They were completely booked already. I was disappointed about that, because if we'd been able to get in for Wednesday, we would have had results by Friday, which would mean just one more week of not knowing. Instead, we are scheduled for Friday morning (7/10), and will likely get results on Monday. The head of the department at a major hospital in Boston will be doing my CVS, which puts me somewhat at ease. I think the genetic counselor was a little taken aback by how adamant I was that I would only consider having a very experienced doctor perform the test, but whatever. Every study I have read about CVS has found that this is one test where experience matters enormously, and the risk of miscarriage from the procedure is significantly lower with a more experienced practictioner. I generally find that medical professionals are surprised by patients who have actually read the studies, and act as their own advocates.
We decided to hold off on telling our families until we are through this next bit. I definitely could not deal with the dichotomy of congratulations and CVS stress all in one week. I called my mom and asked her to just hold on to the package when it arrives. She was puzzled, but agreed not to open it. I also called my friends who were dropping off the package to my dad, and asked them not to give it to him. They promised that they wouldn't. T. also called his mother (who is eagerly awaiting a big announcement) and told her that there would be no big annoucement this weekend, and that she shouldn't bring it up.
Last night, we were able to stay completely distracted by having dinner with friends, one of whom I hadn't seen in a long time. It was really fun, and I got to catch up on tons of gossip, which is always nice. Today, we are heading into Boston for the day, and catching the Red Sox game--if it stops raining, that is! It has been raining for so long here in New England that I am starting to mildew. Tomorrow, we are headed to the lake for a massive 4th bash with friends and family. That's gets me through until Monday, at least.
UPDATED: I just found this on a medical center website that explains prenatal testing. It is going to carry me through the next few days, I think: Five out of every 100 women who take the test receive a positive result and are considered "screen positive." Most women with screen positive results will not have a baby with Down syndrome.