results. sort of...July 28 2012 at 12:31 AM
|BroodyHen (no login)|
forgive me that this is incoherent, but it is complicated:
i went in for my nuchal scan today. the nurse was great, right away showed me the heartbeat and right away showed me the nuchal was thin and measured it at 1.2. what a sigh of relief. she showed me the nasal bone, both legs, both arms, even fingers. it was great. while this is going on my GC comes in the room to tell me that much to their shock, materniT21 was actually able to test my blood sample. the very same sample that verify could not test due to too much maternal DNA. the materniT21 results are negative. hooray! its a celebration! but then they tell me to wait for the doctor to come in and not five minutes later the doc is telling me that my state screen test (you know, that combines the blood work with the nuchal measurement to give odds for trisomy 21 and 18) has come back POSITIVE. my revised risk is 1:32 for downs (down from 1:48), negative for trisomy 18, 1:1,000. what?! but the blood test says negative - lets go with that! the state screen is notorious for false positives, especially for the over-40 set. it is only a screening test. yeah, yeah, they tell me that materniT21 and verify are so new that they are not really 100% trusting it (so why offer it?). that these tests say they have specificity of 99.9% but that it is with such a small sample (hundreds) that we can't count on that and over time with more women being tested the accuracy rate will surely go down. plus, since verify couldn't even test my sample at all, it makes them suspicious and cautious to accept the materniT21 results. since they use the same technology, it doesn't make sense that one company could test the sample and another couldn't. incredible that i insisted on having both companies test my sample (part of my argument for double testing was to account for differences in the lab!). i find it strange that the GC is unwilling to accept the materniT21 results. they almost admit that the state screen is kinda unreliable, but now hold it up as the one i should give weight to. as you can imagine, i'm confused!!!
they have recommended that we send a new sample to verify and see if they can test it (done - another 2ww). they say they'll give more weight to this new and now suddenly less reliable test if it comes up negative twice with both materniT21 and verify (interesting since they insisted it was entirely unnecessary to run the test with two companies when i insisted i wanted to for double assurance). they are basically recommending an amnio now.
further, they insist that the nuchal measurement alone is useless. they say i can take no comfort in the measurement without combining it with the bloodwork (PAPP and HCG). is that really true?
needless to say, we are a bit overwhelmed and perplexed by the turn of events here. hmmmmm.
again, thanks for listening. who else would understand how insane this is?!
- Broodyhen... - Erin on Jul 28, 10:12 AM
- First, I am so sorry, this must be torture! - Sara H on Jul 28, 10:17 AM
- Lots of information - Marti on Jul 28, 1:13 PM
- Oh my! - mel on Jul 28, 4:53 PM
- ugh - jkl on Jul 28, 5:35 PM
- I'm really sorry - Jamie on Jul 28, 5:46 PM
- Ok- - Teresa on Jul 28, 6:24 PM
- Oof. - Laura on Jul 29, 10:09 AM
- thank you so much for the support! - BroodyHen on Jul 30, 6:42 PM