I'm so sorry you're going through this. We were given 1:21 some weeks back, and had an amnio as a result.
It sounds as though your midwife didn't give you the world's most complete information, and I've found, reading forums and such, that that's pretty common. Medical professionals seem to be extremely bad at this, for some reason. I was just told over the phone that the baby was 'positive' for something. Other people have actually been told their baby HAD Down, when all that meant was that the numbers were high and needed to be looked at. BLEAH.
Anyway, I'm no expert, and if I say something that's incorrect, please someone jump in and tell me, but this is what I've found:
As people have said, remembering that the odds are in favor of its being nothing is helpful, at least a bit. Right now they're playing with numbers and probabilities from the blood work. What they're going to offer you is a chance to do diagnostic testing, which can give you real answers. Before that, they'll probably want to do a thorough ultrasound, which will let them look for the 'soft markers', things like bone length, nasal bone presence, tissue thickness and the like, which can give some clue as to whether Down seems likely, and may adjust your numbers up or down.
Other people have said this too, but the key thing to figure out is what you're going to want to do if it is Down, because that will determine a lot of what you decide. CV and amniocentesis carry a small risk of miscarriage with them, but they will give you a real yes or no answer. If you would terminate, or consider it, if the answer is yes, or if you feel it would be important to know before the baby is born, you may decide it's worth it to proceed with one of them. My husband and I did, although I was extremely conflicted about what we would do in the event of a positive result, and incredibly fearful about it.
If you wouldn't consider terminating the pregnancy regardless of the answer, you may simply not find the risk acceptable.
There are also some new, noninvasive blood tests available, which my doctor didn't think were as good as amnio, but are apparently quite good, and may be a good middle ground. I don't know if they're available everywhere, and sometimes insurance doesn't cover them. You may want to ask.
This was the scariest damn thing I ever went through, and I am so, so sorry you're having to face it. Let us know how things go. Like I said, my sole experience comes from having read too much stuff on the Internet while handling this myself, so I am no expert, but if you have questions, please ask. A lot of people here have been right there.
One piece of advice: only read reliable looking medical sites if you look this up on the Internet, and don't read the comments. I nearly sent myself out of my mind with that. People have political and religious agendas, some of the stories, I'm pretty sure, are not real, and it can just be awful and creepy watching people make bombastic statements about what you 'should' do and feel. I say, avoid hearing about what anyone who's not your nearest and dearest feels about this.
i forgot i even
.. but i don't know what to
I've been there too hun, it's such a worrying time!! It's likely that they'll offer you the CVS when you go tomorrow - they usually do it before 13 weeks. My NT scan and bloods came back with a 1:11 chance of DS and we went in for a CVS a few days later - the placenta is posterior so they were unable to do it and asked us to consider an amnio at 17 weeks.
. It must've been a complete shock to you.
