You know it's bad news when the OB calls with your b/w results...

MickeyM04 · November 2011

Mid-last week I get my 16 week b/w done.

So I get a call from my OB this morning. Not my OB's office, my OB personally. The first thing out of my mouth is, "Should I be worried if you are calling me?" She says I shouldn't be worried but my b/w doesn't look like she expected it to look. I ask her what that means and she said that although my b/w at 12 week showed a 1 in 1300ish risk of Down Syndrome, my 16 week b/w showed a 1 in 113 risk of D/S. She said we can do an amnio to find out definitively one way or the other, but that the a/s could give us a pretty good idea because they can look at things like how far apart the eyes are, and other indicators of D/S.

MH is staying completely positive. He said it's still a less than 1% odd, which my doctor pointed out too, but when you go from .07% chance of D/S to a .88% chance (i.e. your odds just increased ten-fold), it's hard to be all glowy and optimistic about it. He said he would never ask me to terminate a pregnancy, even if the odds were 1 in 4 and that it's completely up to me what I want to do. My doctor said if we would terminate if our child had D/S, I should get the amnio. I always said I would never terminate because of something like D/S, but now I just don't know. (I hope that doesn't sound horrible...but after doing just a little bit of research, I never realized everything that D/S entailed.) As much as I appreciate MH's "it's up to you" stance, I feel completely lost. I want someone to tell me what to do. Or give me some advice.

Why can't I catch a break?

ECHC829 · November 2011

((hugs)) to you peanut!

I don't have much advice to offer, since I'm right there in the same boat as you, except I had a 1 in 85 chance at the 12wk (fx its lesser risk after the 16wk bw).... but I've definitely felt all those emotions so far. We decided if we do fall into the 'other side' of the risk we wuold not terminate. I don't think either of us could handle it after the first loss, the infertility, and the fact that my chances getting pregnant going fwd are just going to continue to get worse (as will future risk ratios) - I have DOR. It's definitely scary. I guess for right now (as my promise to you and LO) I've just been trying to focus that I could much easier be one of the 84 who is perfectly fine as opposed to the one who is not. We aren't going to do an amnio, but will see what our final risks are next week and probably do some more extensive measurements at the A/S like your doctor said too.

It's definitely a hard thing to swallow. Knowing how much you've already been through and now are faced with a possiblity that could leave you facing daily struggles for the rest of your and the LOs life. It's definitely heartbreaking to think about.

I know someone from PAL posted on my thread last time that she was 1 in 10 and ended up having a perfectly healthy LO. Sometimes it helps to think how odd of the chance 1 in 113 really is.... at least that's what I've been trying to do.

Heather91705 · November 2011

For what it's worth, we had something similar and at this point, I'll take whatever I get. We had a calcium deposit on the heart at the 19 week level 2 ultrasound. Moved our risk from 1 in 10,000 to 1 in 5,500. So this essentially doubled our odds and when they say less than 1%, that doesn't make me feel much better since we have been that 1% in the past. BUT, at this point, I see it like this. We had clean 12 week b/w and ultrasound, so if this risk is increased, the severity will be low. So I can deal with that much easier than KNOWING they will live in a wheelchair for their whole life. Does that make sense? Maybe I'm trying to talk myself down, but it's how I have to see it for now. It could be worse...

smallfry5909 · November 2011

(((HUGS))) This is a very scary situation. It's hard to feel confident in the increased odds, but I've seen people with ratios of 1:10 and their babies ended up perfectly healthy.

If it were me, I would absolutely get the ultrasound, and then go from there. Are you able to get an ultrasound earlier than your a/s, because I think the waiting would be agony.

Thoughts are with you in whatever you decide. Good luck - unfortunately there is not an easy answer, but I hope everything turns out perfect for you and your LO.

busterbeagle · November 2011

I'm so sorry you are going through this. It is still a small chance, but if you are feeling so conflicted over it, you might seriously consider getting the amnio. You will get a definitive answer that way and faster than your a/s. But of course, you are overwhelmed right now and might want to think/talk it over. Sending T&Ps that everything is just fine and you know that for sure very soon.

RunSchwartzRun · November 2011

I'm so sorry you have to even think about this. When can she get you in for the a/s? Hopefully that will look clear and you can go from there. It is hard to give advice when I haven't been there, but I probably would want as much information as possible before making any decisions. Many many many (((hugs))).

emd2887 · November 2011

I'm so sorry you are even in this situation. Although 1 in 113 sounds like a lot, the chances of your LO having D/S are still very low. I'd personally get the amnio done so I could have a definitive answer, or see if they can get you in for the a/s soon. Good luck with whatever you decide to do.

williams4me · November 2011

Try and stay calm (I know, I know, way easier said than done) but it could all mean nothing, so try not to get too worked up over anything yet.

HUGS!

tweedle29 · November 2011

Ugh! I have been in your shoes and know what you are going through. I am so sorry you have to deal with this. I had a screen positive at 12 weeks...odds got better at 16 weeks, but the 4 weeks were hell. Truthfully, I am sure everything is fine. Try to remember that the screening tests are just that, screenings. While I know that they are extremely beneficial in alerting parents and doctors to potential problems, a lot of times they cause MUCH unneeded stress. I am reminding you of what reminding you of what you told me when I was in your shoes: Stick out tongue

https://community.thenest.com/cs/ks/forums/thread/59506768.aspx

Your decision is very personal, but I can tell you if it were me, I would prob get the amnio. You and I sound very similar in the ways we handle things (overanalyze and stress!). Even tho the combined risk at 16 weeks came back 1 in 9,400, I am still TERRIFIED for the level II. I almost wish I had just done the amnio I had scheduled and been done with it. You are in Chicago right? Northwestern? If so, my OB had nothing but amazing things to say about the office she sends everyone to for amnios. Very low risk of anything m/c, doc's have been doing it forever, etc. My SIL had a CVS done by one of the doc's and had a very positive experience (as positive as it could have been).

Oh also, this board was pretty helpful. https://community.babycenter.com/groups/a2895185/amniocentesis_support_information_group

Big hugs to you, hang in there.

HBaylies · November 2011

What you are saying doesn't sound horrible. You are allowed to feel or think anything that comes across your mind, no matter what it may sound like to someone else. I'm so sorry your odds have changed and for this extra stress. I'm glad your DH is being positive and reminding you that even with changed odds, they're still not terrible ones. There's a lot I'm sure you would want to consider based on what you find out at the a/s. I'd say to start thinking about your options either way, but to not set anything in stone until after that appointment. You may change how you feel based on the results. {{big hugs}}

MickeyM04 · November 2011

tweedle29:

Ugh! I have been in your shoes and know what you are going through. I am so sorry you have to deal with this. I had a screen positive at 12 weeks...odds got better at 16 weeks, but the 4 weeks were hell. Truthfully, I am sure everything is fine. Try to remember that the screening tests are just that, screenings. While I know that they are extremely beneficial in alerting parents and doctors to potential problems, a lot of times they cause MUCH unneeded stress. I am reminding you of what reminding you of what you told me when I was in your shoes:

https://community.thenest.com/cs/ks/forums/thread/59506768.aspx

Your decision is very personal, but I can tell you if it were me, I would prob get the amnio. You and I sound very similar in the ways we handle things (overanalyze and stress!). Even tho the combined risk at 16 weeks came back 1 in 9,400, I am still TERRIFIED for the level II. I almost wish I had just done the amnio I had scheduled and been done with it. You are in Chicago right? Northwestern? If so, my OB had nothing but amazing things to say about the office she sends everyone to for amnios. Very low risk of anything m/c, doc's have been doing it forever, etc. My SIL had a CVS done by one of the doc's and had a very positive experience (as positive as it could have been).

Oh also, this board was pretty helpful. https://community.babycenter.com/groups/a2895185/amniocentesis_support_information_group

Big hugs to you, hang in there.

Thanks Tweedle...kind of puts things in perspective to see what I told you! My doc did bump up my Level II u/s to next week on 12/6. I won't be as far along as they usually like when they do those, but she said if the baby has DS, they should be able to see some markers by 17 weeks...and the baby has always been measuring a week ahead, so realistically it's more like 18 weeks. I think if everything looks good we will just wait and see...if they see something suspicious on the u/s we will probably do the amnio.

I'm just freaking out because my stats are getting worse with the more info they have...when they had the 12 week info (NT measurement, HCG, PAPP-A), it was 1 in over 1300...now they have all that info plus all the new info, and it's 1 in 113. So it's not like they're basing that stat on just the NT measurement, or just the HCG level...they're basing it on like 7 or 8 different numbers they have available to them.

I just wish that I could reach a decision as to what I would do if the baby did have DS. Like if I could unequivocally decide that no I would not terminate under any circumstances, then that would make all my other decisions easy (an amnio wouldn't be necessary since I wouldn't act on the results, I could stop freaking out about the u/s, because no matter what it shows I wouldn't get the amnio, etc.). But I keep going back and forth which makes the u/s that much more important, because it could give us an answer one way or the other. Does that make sense? Probably not.

Thanks everyone for all your kind words and advice. If you'd keep us in your T&Ps I'd be very grateful.

pottermommy · November 2011

Oh sweety I am so sorry. I have never been in this situation so I can not comprehend how you are feeling right now.

I think that the reality of D/S is a big big deal, and it is something that you have looked into and studied and that for your situation the amnio is probably the best option. Either way what ever you AND DH decide you can't do it with your eyes closed. The more you know, the more prepared you are.

That being said, can you do the amnio after another US???? If you get the US and it shows everything normal and healthy and relieves you both them maybe you wouldn't need the amnio, but if it doesn't give the results you want then you can go with the test.

The amnio scares the crap out of me, I am not going to lie, but my mama got an amnio while pg with me and that was 28 years ago and here I am, healthy and having my own baby. Medicine has come a long way since way back then!!!!

T's and P's are with you and YH, the decisions that you have before you aren't easy but know that no matter what, you are there to support each other, and that we support you too.

tweedle29 · November 2011

Peanut2929:
tweedle29:

Ugh! I have been in your shoes and know what you are going through. I am so sorry you have to deal with this. I had a screen positive at 12 weeks...odds got better at 16 weeks, but the 4 weeks were hell. Truthfully, I am sure everything is fine. Try to remember that the screening tests are just that, screenings. While I know that they are extremely beneficial in alerting parents and doctors to potential problems, a lot of times they cause MUCH unneeded stress. I am reminding you of what reminding you of what you told me when I was in your shoes:

https://community.thenest.com/cs/ks/forums/thread/59506768.aspx

Your decision is very personal, but I can tell you if it were me, I would prob get the amnio. You and I sound very similar in the ways we handle things (overanalyze and stress!). Even tho the combined risk at 16 weeks came back 1 in 9,400, I am still TERRIFIED for the level II. I almost wish I had just done the amnio I had scheduled and been done with it. You are in Chicago right? Northwestern? If so, my OB had nothing but amazing things to say about the office she sends everyone to for amnios. Very low risk of anything m/c, doc's have been doing it forever, etc. My SIL had a CVS done by one of the doc's and had a very positive experience (as positive as it could have been).

Oh also, this board was pretty helpful. https://community.babycenter.com/groups/a2895185/amniocentesis_support_information_group

Big hugs to you, hang in there.

Thanks Tweedle...kind of puts things in perspective to see what I told you! My doc did bump up my Level II u/s to next week on 12/6. I won't be as far along as they usually like when they do those, but she said if the baby has DS, they should be able to see some markers by 17 weeks...and the baby has always been measuring a week ahead, so realistically it's more like 18 weeks. I think if everything looks good we will just wait and see...if they see something suspicious on the u/s we will probably do the amnio.

I'm just freaking out because my stats are getting worse with the more info they have...when they had the 12 week info (NT measurement, HCG, PAPP-A), it was 1 in over 1300...now they have all that info plus all the new info, and it's 1 in 113. So it's not like they're basing that stat on just the NT measurement, or just the HCG level...they're basing it on like 7 or 8 different numbers they have available to them.

I just wish that I could reach a decision as to what I would do if the baby did have DS. Like if I could unequivocally decide that no I would not terminate under any circumstances, then that would make all my other decisions easy (an amnio wouldn't be necessary since I wouldn't act on the results, I could stop freaking out about the u/s, because no matter what it shows I wouldn't get the amnio, etc.). But I keep going back and forth which makes the u/s that much more important, because it could give us an answer one way or the other. Does that make sense? Probably not.

Thanks everyone for all your kind words and advice. If you'd keep us in your T&Ps I'd be very grateful.

You make complete sense. I felt and said basically the same thing word for word. And DH's are funny aren't they? I can't tell you how many times I have prayed for DH's calm personality and level head. His positivity is calming, but also maddening. Super Angry I was so freaked out, I couldn't understand why he wasn't just a tad worried!!

I am glad they moved the level II up. Fingers crossed for no markers and peace of mind!

Izabella22 · November 2011

I agree w/ SweetTurnip - I'm sure your Dh means to be supportive, but dumping the entirety of that sort of decision on you isn't helping you at all. I'd talk to him about all your concerns, the potential challenges of a d/s child, the risks of amnio, and get his input as well. Its not simply your decision, you're both parents to this baby so he needs to work through this with you. I wish I had some nugget of wisdom to help you, I have a nephew w/ D/S and he is wonderful, but it definitely hasn't been easy so I completely get your concerns. His is the form of downs that can be inherited and while my brother didn't feel the need to get screened, b/c I had losses and we weren't sure I got some genetic testing done before we started trying again after my 2nd loss. It was well worth the reassurance that I wasn't a carrier, if I was I'm not sure we would have continued trying. I hope you and your Dh can come to an agreement about whats next, I'm sorry you even have to think about it and the odds are still really greatly in your favor, but lots of big *HUGS* to you, added stress when you are already dealing w/ Pgal emotions is so tough. Hang in there and whatever you decide will be what is right for you and your family.

mrs.julia.goolia · November 2011

big hugs---I know it's easy to focus on the numbers and how they 'worsened' but reality is that you have a fantastic chance that everything will be totally fine. Easy for me to say, I know, but try your hardest to focus on the positive and go from there. I also agree that your husband should sit down with you while you two really hash this all out, all of the options and your 'plan'----you need as much support as he can handle right now!

sbphotos · November 2011

I am so overjoyed at the response of this post. Not a single judgmental comment. I know I should expect only the best on PGAL anyway, but still it makes me so happy to see.

I started out with a 1:92 risk at my 12w and now I'm waiting for the next round of bw and obviously very much hoping the odds are more in my favor. I feel EXACTLY like you...I have no definitive decision on what I would do and the wavering back and forth is enough to drive ya nuts. I think if my results do indeed make my risk even worse, then I will end up with an amnio. However, sometimes I think I just don't want to know because I don't think I could make a decision if it came back positive for downs. Ugh. So, I understand your dilemma. Wish I had more advise. Instead I'll just send you some positive thoughts for whatever decision you make.

sbphotos · November 2011

I am so overjoyed at the response of this post. Not a single judgmental comment. I know I should expect only the best on PGAL anyway, but still it makes me so happy to see.

I started out with a 1:92 risk at my 12w and now I'm waiting for the next round of bw and obviously very much hoping the odds are more in my favor. I feel EXACTLY like you...I have no definitive decision on what I would do and the wavering back and forth is enough to drive ya nuts. I think if my results do indeed make my risk even worse, then I will end up with an amnio. However, sometimes I think I just don't want to know because I don't think I could make a decision if it came back positive for downs. Ugh. So, I understand your dilemma. Wish I had more advise. Instead I'll just send you some positive thoughts for whatever decision you make.

Want a personalized experience?

You know it's bad news when the OB calls with your b/w results...

Re: You know it's bad news when the OB calls with your b/w results...

Choose Another Board

Search Boards