"intermediate risk" for combined NT/blood test

[lmh2402]

UPDATE 2:
i just got a call with results of my 2nd tri screening - my number is worse and i am now categorized as "increased risk"

number is 1 in 196, which is the risk equivalent of a 37 year old.

i am sick over it b/c i had convinced myself that the number would be the same or better, and then we would feel comfortable just moving forward without any further testing.

i think i may be headed for an amnio in the next few weeks. would appreciate any p&pts you could spare. thanks.

UPDATE:

DH and i met with the genetic counselor yesterday and felt so much better. she spent an hour walking through the test and the three individual results and explained that each of our numbers on their own weren't overly concerning.

at this point, we've decided to not do a CVS. wait and do the 2nd tri blood test (quad screen). she said that when done in combo with the NT blood work, the risk of false positive is less.

based on those results, we'll decide if we're going to do an amnio or just let it go.

i feel better. i think. i'm actually tually pretty sick with a sinus infection the last couple of days, so everything else in life seems less urgent than my exploding head.

anyway, wanted to just say thanks for the support and feedback.

kelli, i would have loved the MaterniT21 test - that was the noninvasive test i was referring to. but it is apparently not yet available/approved in NYS



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anyone BTDT?

just got a call from the doc's office. at first i was told that my results are between 1 in 100 and 1 in 1000.

the nurse ran the numbers and came back with my specific risk for down's being 1 in 449.

i am full-body shaking. i just wanted to believe that i would be low-risk again b/c that's what i was with DS

i now need to decide if we want to do a CVS. or wait and do another blood test/screen at 15/16 weeks.

please tell me your experiences.

thanks

i know it's "just" intermediate risk.

ETA: if it matters, i know the "problem" is with the blood results. the scan itself came back "well within normal range."

[amldaley]

I was not deemed at risk based on the NT test but I do know the fear when something is not as you thought or hoped it would be. They could not see the chambers of DD2's heart until recently. Every ultrasound I went in for was a crashing disappointment when they still could not see what they needed to see.

I have no advice for you except to say that the NT test is not the end all be all. I had to have mine redone as the tech did it incorrectly the first time (which was scary, too...what else was he doing incorrectly?!)

Hang in there...I know some better advice will find it's way to you.

[mikala]

No BTDT but

I'm on the fence about the NT scan/testing for #2 for this reason. Any result other than "low risk" seems to lead down quite the rabbit hole of worry and more decisions.

[sntm]

They considered that intermediate risk? After my ultrasound, they gave me a less than 1/400 risk based on the imaging alone, and that was enough for me to forego the blood testing. I'nm 36, though, so I was expecting higher.

Personally, the CVS carries too much risk for me and wouldn't impact what I would do. If you think you might end the pregnancy if the results suggested Down's, it may be worth it. Otherwise, there's nothing else you could do about it.

So sorry this is freaking you out. ((()))

[lmh2402]

They considered that intermediate risk? After my ultrasound, they gave me a less than 1/400 risk based on the imaging alone, and that was enough for me to forego the blood testing. I'nm 36, though, so I was expecting higher.

Personally, the CVS carries too much risk for me and wouldn't impact what I would do. If you think you might end the pregnancy if the results suggested Down's, it may be worth it. Otherwise, there's nothing else you could do about it.

So sorry this is freaking you out. ((()))

Thanks, guys. I'm 36 too. But yes, this is considered interm risk. Based solely on the numbers.

[infocrazy]

Long story short, the risk of an amnio/CVS is greater than your risk (0.2%) of being the 1 in 499. In your case, I wouldn't personally unless it would change how you would proceed.

I'm so sorry though. I know how nerve wracking unexpected results can be.

[SkyrMommy]

We went through this with DD, we had the call with results of 1/70 for Down's and a questionable ultrasound as well... the call came on a Friday afternoon & I was in such shock I didn't know what to ask on the phone and spent the weekend coming up with questions and worries with no one to ask.

All was well, another ultrasound as well as the 3D ultrasound came back lovely, the doctor who did my 3D intensive scan was incredible and ended by saying we had a perfect little growing girl and to rest our minds about any genetic issues.

[Uno-Mom]

Poor you! How stressful.
Personally I wouldn't do further testing that could pose risk unless it was medically necessary for me or the baby. But we would joyfully welcome a baby with DS so that definitely colors my response. (Don't get me wrong - if my baby had DS I would want to know and prepare if possible. Thats for sure!)

I really, really hope things turn out beautifully for you and you get the info you need asap.

[lmh2402]

thanks, guys

i'm feeling a bit calmer. it's just that the idea of *something* maybe being wrong...and just not knowing...it drives me nuts. kwim?

our risk for the trisomys is very low, so it's *just* the downs risk, which is not something for which we would terminate.

so i think we're 99.99999% sure we're going to just wait until the next round of screening at 15-16 weeks...think it's more blood and maybe another scan? who knows

i just...HATE...feeling this way. i haven't been able to control the random tears all afternoon. 15 weeks can't come soon enough

anyway, thanks for the feedback, the support and hugs.

[mikeys_mom]

I had similar results with my screening test for DD1. I was 34 at that time and based on my blood test, my risk was 1/199. I had the option to do an amnio but I didn't feel like the risk was worth it for me and we weren't going to terminate anyways. At my 20 week u/s they did not see any of the soft markers and that was enough to reduce my worry a bit. DD1 is fine with no issues.

I remember how stressful the whole experience was.