NT scan results

JFH2010

So that was difficult...I spoke with the dr and my results are not great, not terrible. The sono results were fantastic (1.2) but the blood results were bad. Combined my risk is 1:171, which is considered high. He doesn't include nasal bone info in the calculation because he doesn't think it's accurate, but fwiw the sono tech was pretty sure she saw one. If he included that info my risk would go down. He said that if I was on the fence about cvs, I should go ahead and do it. I think I've decided not to - if I miscarried a healthy baby I would be devastated. I can get the sequential screen in two weeks, and if that also shows elevated risk, I can get the amnio. I knew ahead of time that I would get the CVS if odds were worse than 1:100, but I hadn't decided what to do with a somewhat elevated risk level. I really hate to keep waiting with this "high risk" label over my head, but I'm not sure the numbers are worth taking the m/c risk.

Sorry to be a downer. It's been a hard decision to make. If any 2nd-time+ moms have any experiences or thoughts to share, I'm all ears (well, eyes).

shouldbworkin

(((hugs)))  I think you're making a prudent choice.  The sequential screen is much less invasive and sounds like a good in between for questionnable results before proceeding with an amnio.  I would probably make the same choice. GL!

Tambcat

I'm sorry that you didn't get better results. I think I would do the same as you w/r/t further testing. It's encouraging that the sono results were excellent. I hope things look better in a couple of weeks.

funkymonkeyohyeahhh

shouldbworkin:

(((hugs)))  I think you're making a prudent choice.  The sequential screen is much less invasive and sounds like a good in between for questionnable results before proceeding with an amnio.  I would probably make the same choice. GL!

Exactly this. 

FWIW, my husband's daughter had an elevated risk of Downs from the NT scan and they decided to get the amnio. She passed away (many) weeks later and though doctors say it was unrelated to the amnio, my husband says he would never get an amnio again because the "what if..." kills him.

I hope that your next scan shows wonderful results! *Hugs*

ETA typo

benoitfan

My doc never does the NT without sequential screen b/w for this very reason.  It can just lead to unnecessary worry.  The more info you can have the better.  Do the second b/w and then go from there.  If after those results come in you are still worried, then you may want to have the amnio. 

biblionerd

Is the 1:171 your risk for Down's or other trisomies? To me, that would personally make a difference in what further testing I did. 

JFH2010

Thanks for the support, all. I'm trying to focus on the fact that my chances of having a HEALTHY baby are 170:171. Sounds much better!

I'm 35, so my baseline risk is about 1:300. I'm not sure the NT breaks down risk by disorder - doesn't the risk include TS 13 and 18? The dr didn't mention it but I will ask at my sequential screen. I just have to assume everything is fine, and look at the additional testing as more hoops to jump through. I really believe that my baby is ok, and will continue to believe it unless the evidence otherwise is irrefutable. Nothing else to be done.

Thanks again!

LilyPotter218

I think you are being very smart and level headed about it. Get some more information with more non-invasive screening... See what happens, and then do the amnio if they both suggest an elevated risk.

Bump that up to 1:200 just for round numbers and that is what, a .005% chance of an abnormality? (seriously someone correct me if Im wrong, Im a designer, I suck massive amounts with numbers!) 

2007wife

JFH2010:

Thanks for the support, all. I'm trying to focus on the fact that my chances of having a HEALTHY baby are 170:171. Sounds much better!

I'm 35, so my baseline risk is about 1:300. I'm not sure the NT breaks down risk by disorder - doesn't the risk include TS 13 and 18? The dr didn't mention it but I will ask at my sequential screen. I just have to assume everything is fine, and look at the additional testing as more hoops to jump through. I really believe that my baby is ok, and will continue to believe it unless the evidence otherwise is irrefutable. Nothing else to be done.

Thanks again!

What about the option of seeing a specialist/perinatologist?

 With my first pregnancy I had similar results.  NT measurement was fine but the protein level were very high. My risk went form 1/762 to 1/298. Again not crazy odds but still increased enough to be refereed to a perinatologist. Now when an obgyn at my practice told me my results she immediately said  "oh you should get an amnio if they offer it to you" (she was old, uninformed and completely off base). 

 I saw the perinatologist around 14 weeks. They did another high level u/s, took a bunch of measurements and looked for more markers. At that u/s they couldn't see all chambers of the heart so had me come back to see another specialist for a fetal echocardiogram. The doctor who did that explained that early in pregnancy the placenta is moving around and looking for the best place to attach. This can lead to the weird/high protein levels.

 After that things looked really good and they advised against an amnio. I was glad I got a second opinion, an u/s and closer look before having to make a decision on an amnio.

So I definitely recommend seeing a specialist before any invasive testing that caries the risk of mc.  

 and yes, the starting risk is calcualted based on your age. The results also differentiate between Trisomy 21, 13 and 18. My risk for Down syndrome/trisomy 21 went up, but my risk for 13 and 18 went way down.

biblionerd

dup

biblionerd

JFH2010:

Thanks for the support, all. I'm trying to focus on the fact that my chances of having a HEALTHY baby are 170:171. Sounds much better!

I'm 35, so my baseline risk is about 1:300. I'm not sure the NT breaks down risk by disorder - doesn't the risk include TS 13 and 18? The dr didn't mention it but I will ask at my sequential screen. I just have to assume everything is fine, and look at the additional testing as more hoops to jump through. I really believe that my baby is ok, and will continue to believe it unless the evidence otherwise is irrefutable. Nothing else to be done.

Thanks again!

Unless different NT scans are done differently, you should receive results separately for trisomy 13, 18, and 21. They are quite different disorders and going into it you have a different baseline for each one, and in all honesty, the outcome for each one is very different. So it's important to separate the results to get a clear picture. It sounds like your Dr. might have only given you one of them. When I received my b/w last time it said your odds of trisomy 13 are 1:xxxx, 18 are this, and 21 are that. You still have very good odds though. 

in my life

With my first pregnancy I had results of 1:246 which, for my age, was considered elevated risk. I weighed my options and decided not to do any further testing. I often reminded myself that with my results, (and yours) there was still less than a 1% chance of Down syndrome.

 She was born w/o Down syndrome or anything else, so I'm happy with my decision. Good luck with whatever you decide! I know it's stressful.

Moneypenny424

I'm sorry you're dealing with this and I pray that things go smoothly for you.  I know you'll make the right decision for you, whether that means testing or not.  A good friend of mine went through something similar 2 years ago.  She was 36 and her NT odds were given to be right about yours (I believe, I could be a bit off).  She agonized about having the amnio and decided against it.  Her baby is perfectly fine.  I agree with what you said--although 1:170, etc. isn't great, it is STILL a low number.

When they do blood work for the NT scan, it will look for differences in protein levels.  For example, they look at 2 particular proteins.  In Down's, one of these proteins is super high and the other is very low.  In the trisomies, both are very, very low.  It is more in-depth than that, but you should be able to get info on the specifics they are looking at.

Good luck, dear!

JFH2010

Moneypenny424:

In Down's, one of these proteins is super high and the other is very low.  In the trisomies, both are very, very low.

 

OK, that makes sense - I asked about the specific blood values, and he said that both are within the normal range but the ratio of the two indicates risk for me. So maybe that means the risk is only for DS. Not that that makes it easier, but it's just good to have some idea of what's going on.

Thanks again for everyone's responses - it's especially tough since we're not telling (most people) yet, so having this board is SO wonderful. I came this I-I close to calling my mom because I really wanted to talk to her about it. The conversation would have been, "Guess what? I'm pregnant! Also, it may have a genetic disorder..." Definitely off-plan for breaking the news! Luckily I got hold of DH pretty quickly, read the responses on this board, and felt OK without calling her. Back on track for happy news-breaking...