First trimester screeing....need advice? - Mothering Forums

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Old 03-16-2010, 09:57 AM - Thread Starter
 
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HI Everyone,
My doctor has said we have the option of testing (via ultrasound and blood) for Down Syndrome and Trisomy 18. She said the test is highly accurate and non-invasive. She also said it its unnecessary and in no required. We would keep our baby no matter what, but I do not really want to go through anything I don't have to and I know several people who had false positives.

Any thoughts or advise?

Thanks!
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Old 03-16-2010, 10:28 AM
 
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We didn't bother last time and won't this time either....wasn't worth the stress for me and we would have kept it anyway.
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Old 03-16-2010, 11:01 AM
 
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We are doing it (Thursday) just because we want a peek at the baby again. I'm having a rough time with this late 1st tri/ early 2nd tri time (i.e., symptoms gone, but no baby movement yet) and just want a peek for reassurance.

We won't "do anything" with the results, regardless of what they are. But yes, I have heard of people screening positive (indicating higher risk) with absolutely nothing wrong with their babes.

Good luck! It's not an easy decision (at least, it wasn't for us).

Part hippie-chick, part type-A career woman, all mama. Enjoying life as a wife to my partner of 11 years, and a mama to our smarty-pants toddler, Cadence.

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Old 03-16-2010, 11:25 AM
 
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We are doing it because the hospital we will be having the baby at is a small hospital with no nicu or facilities to take care of a very sick baby long term. We would keep the baby no matter what but if there is some issue we would like to be able to be somewhere with the best facilties to take care of any issues. If we lived near a hospital with a nicu I dont think we would do the testing.

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Old 03-16-2010, 12:00 PM
 
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The important thing to know is that the folks you know who are screening "positive" but then there's nothing wrong with the baby, are not evidence of an inaccurate test.

The first trimester screening gives your odds, or chances, of having certain genetic abnormalities. It is a screening test, not a diagnostic test.

I decided to have it done, and if the test was giving high risk chances for a baby who was not going to survive past infancy and was going to be in a lot of pain for hir entire life, I would do the amnio for a definitive diagnosis.

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Old 03-16-2010, 01:11 PM
 
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We did it with DD and just had it yesterday afternoon with this baby. I liked getting the measurement results immediately (nuchal translucency = 1.1 (over 3 is worrisome) and a nose bone was present). I could have passed on this test, but my DH insisted.

Like Lyndzies I also like to see the bugger. It's amazing the changes that happen between 8 and 12 weeks. Baby was stuffing hands in mouth and jumping around. It also confirmed my suspicions that I was feeling movement. So amazing the second time how much earlier I am feeling the baby.

Finally, for us, we have a monster deductible ($6000) to meet. Which is just sad and wrong.

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Old 03-16-2010, 03:28 PM
 
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I had the intitial AFP screen (which came back normal) and I would opt to have the NT u/s if my insurance covered it (I might see how much it costs out of pocket, but I hear it's pretty expensive). I wouldn't abort a baby under any circumstances, but I do think it's wise to know, if possible, if baby has something seriously wrong ahead of time. For example, if baby had a neural tube or abdominal wall defect, I'd want to schedule a c-section.

OT, Molly that dedecutible is crazy! I'm so upset dh lost his job if only for his great insurance (our deductible for our whole family was 500 bucks!)
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Old 03-16-2010, 04:35 PM
 
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We didn't bother last time and won't this time either....wasn't worth the stress for me and we would have kept it anyway.
Same

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Old 03-16-2010, 05:34 PM
 
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I'm doing these just because they are both such simple tests and because the Down syndrome test is excuse to see the baby again on the ultrasound. If either test comes up positive it will give me time to read everything I can regarding the diagnosis (I know practically nothing about trisomy 18), and if it turns out in the end to be a false positive that's ok because I will have known going into it that false positives could happen and I wouldn't be completely shocked.
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Old 03-16-2010, 05:55 PM
 
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Ive decided that I wont be doing the 1st tri. blood testing but will do the U/S later on (im high risk so ill have lots) for me it was a even if the test results said xyz it wouldnt matter and for me I know that any result will lead me to be very anxious and stress only to have a U/S later on tell me everything is ok. again this is based on my past history and since its really questionable whether our insurance will cover it I've decided to hold off.
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Old 03-16-2010, 06:56 PM
 
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No, I will not have it done. I will have the usual 20 week ultrasound, but that is it.

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Old 03-16-2010, 11:08 PM
 
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Originally Posted by FtMPapa View Post
The first trimester screening gives your odds, or chances, of having certain genetic abnormalities. It is a screening test, not a diagnostic test.
Just wanted to echo FtMPapa here - the "Ultra-Screen" (the name it goes by) is only a diagnostic test. It will not tell you Yes or No for anything, rather, the results will tell you what your chances are (e.g. 1 in 400) for having a baby with downs or one of the trisomies (18, maybe another one as well). They do a blood test and measure the nuchal translucency, as well as, take a good look overall.

It can be very stressful - and unnecessarily so, since they are looking SO closely at everything, oftentimes, very small, generally inconsequential things can be found, and they'll recommend that it be rechecked later = loads of stress while you wait and worry and worry and wonder...

It is expensive - I can't recall the exact amount they told me, but it was over $1k, and not all insurances will cover it.
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Old 03-17-2010, 12:06 AM
 
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I'm having it and have already set it up, in fact. Our insurance covers it, I want to get a peek at the baby on an ultrasound, and it would be more stressful for me not to know than to have a definite answer.

Girl #1: 2/14/08
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Old 03-17-2010, 01:11 AM
 
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The thing is, The test just gives you odds, not definite answers. And as for the US, I have another one for dating that will be scheduled in a bit. And then because of my diabetes I end up having a level 2 done at like 20 weeks and then they schedule weekly us starting at around 28 or so weeks to make sure fluid levels stay good and the baby isn't getting too big.
So they peak a lot and have a lot of chances to see if there is anything that might warrant a nicu or big hospital birth.
But I can totally understand having the test for another peek.
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Old 03-17-2010, 04:24 AM
 
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The thing is, The test just gives you odds, not definite answers.
Yes yes, I don't want to confuse anyone by having stated otherwise, sorry. I was thinking that with my girl the results that came back were 1 in 10,000 because the lab didn't go any lower than that, and I thought that that answer was pretty "definitive". It technically wasn't, but it sure gave me peace of mind beyond a doubt.

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Old 03-17-2010, 10:48 AM
 
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Originally Posted by FtMPapa View Post
I decided to have it done, and if the test was giving high risk chances for a baby who was not going to survive past infancy and was going to be in a lot of pain for hir entire life, I would do the amnio for a definitive diagnosis.
Me too. I need to know. Did the same with DS. However, I ask not to know the exact risk numbers. For each condition the test covers, my MW has a benchmark number in her mind above which she is comfortable and below which she is concerned. I just ask for a thumbs up or a furrowed brow and we go from there.

I will also refuse any genetic "counseling" that may be recommended because of my age (36). In Ontario, you are automatically sent for counseling if you are over 35. The session takes place BEFORE the testing (at least that's how it went for a friend of mine recently - she said it was super scary and then her results showed virtually no risk). I think that's absolutely ridiculous. I'm in Quebec and at a birthing centre so I hope it's different. I don't even want to have that conversation.

Happy mumma to my boys Henny Tom (Nov 30, 2008), Arlo Odie (Oct 5, 2010), and baby SISTER! due mid-Dec 2014.
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Old 03-31-2010, 02:37 PM
 
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I'm scheduled for my 1st trimester screening tomorrow. It wasn't really an option for me to refuse it - I just HAVE to have all the information I can, about everything in my life, ever. I think it's pathological, lol. With that said, I don't necessarily *like* that I can can so easily access all kinds of complex information about my pregnancy. Sometimes ignorance IS bliss, right?

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Old 03-31-2010, 03:41 PM
 
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Not doing it here. My sister tested "positve" for down syndrome in her last two pregnancies, and none of them actually had it. She was emotionally distraught through her pregnancies which caused a lot of prenatal issues. And as it turned out for no good reason. I understand being "prepared" for the possibility for some, but I personally think that nothing can prepare you for the actuallity of having a mentally disabled child, so I don't want the anguish of a false positive and neither does my husband. I hope you figure out the right thing for you.

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Old 03-31-2010, 07:57 PM
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I second both what FtMPapa and Macy said. If it's something like Down's, I'd want time to prepare myself, and if it's something much worse, I'd want to be able to get the more definitive testing. Both of these, to me, are worth the risk of "false positives." In any event, I don't turn down a chance to see the baby when I can, so I'm doing it (on Friday morning, actually).

Mom to sweet DD 8/08, and adorable DS 10/20/10
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Old 03-31-2010, 08:51 PM
 
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We're not doing it. There's nothing we would do if there were true "abnormalities" anyway. I'm getting a peek at the baby at 12 weeks anyway because at our 6 week ultrasound the baby was dated a week behind, but I know the conception date. We just want to see how he/she is progressing by 12 weeks. But we won't be doing the screening. Just peeking.

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Old 03-31-2010, 09:10 PM
 
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I think I already said something on this, but I just wanted another excuse to talk about myself.

I did mine last week, it was no big deal, the blood draw was one vial, the u/s looked great, my kid has a nose bone, and the nuchal translucency was fine, plus my bloodwork came back great, so....that was the end of that. No amnio, no further nothing (knock on wood).

The huge positive for me was that I had my mother, who suffers from untreated mental illness including major anxiety, freaking out about genetic disorders since my donor and I are both queer, and because I conceived through IVF, but mostly just because she needs serious mental help.* Anyway, now that the results are in and my midwife is saying there's absolutely no reason for me to have an amnio, my mother has been able to relax. (Me, I was never stressed about it.)

* THere is no higher incidence of genetic abnormalities among queers, and I don't think there is with IVF, though if there is, it's probably because infertile people are more likely to have genetic issues going on. Just to be clear.

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Old 03-31-2010, 09:19 PM
 
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Sometimes ignorance IS bliss, right?
This is the approach I'm taking, and yes, it is! I'm low risk and have decided to decline all those tests. Obviously it would be awful to be surprised at the birth with a baby that is not healthy, but I think that surprise would be equally awful whenever someone gets the news. At least if it happens at the very end, when friends' and family's excitement and anticipation of a new baby is at its highest, they'll have a better sense of the loss that dh and I would be experiencing and we could all go through the grieving process together.

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Old 03-31-2010, 11:23 PM
 
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I am not doing it. I know that I would worry if I got a "high odds" response. My midwife is fine with me not doing it-- she said most of her clients decline.
I didn't do the triple screen with either of my previous pregnancies-- I will do the 20 week scan and I think the odds are good that that would show if there were any issues we needed to adjust our birth plan for.

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Old 04-01-2010, 12:29 AM
 
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I did mine last week, it was no big deal, the blood draw was one vial, the u/s looked great, my kid has a nose bone, and the nuchal translucency was fine, plus my bloodwork came back great, so....that was the end of that. No amnio, no further nothing (knock on wood).
Congrats! I had mine yesterday and even though the results haven't officially come back, they told methat everything on the u/s looked fine. I got to see my bean jumping around and kicking.

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Old 04-01-2010, 03:58 PM
 
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To all you mamas declining a 1st trimester screening: you are so brave! I wish I could, but I just can't help myself. I just have to KNOW. Curiosity killed the cat, I believe is the saying. However I do feel I have to go with my gut, and my gut says: do it! Do it do it do it! (my gut really is that obsessively repetitive).

So, I did it. The screening went well this morning. Blood work isn't back yet, but u/s results were 'normal' (I hate to use that word, since who the hell are *they* to decided what's 'normal', and what isn't? But I digress); nuchal translucency measured fine, nose bone was present, heart rate good, etc. The little minx was rather uncooperative and refused to turn the right way for measurements for the longest time, so much so that I was beginning to get rather sleepy, lying down like that in a warm room during such an early morning appointment. Yawn. But it was good, you know? I'm such a pessimist sometimes (okay, all of the time), and I usually assume the worst. But I think it's going to be okay. Barring any blood work "abnormalities" (there's that word again), I think I'm good to go.

Don't know yet if I'll be offered any more screenings (are there 2nd trimester screenings, also?), but I'm kind of hoping my Dr. forgets to tell me about them, otherwise obviously I'm going to have to have them ALL.

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Old 04-01-2010, 04:27 PM
 
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I had steps 1 & 2 of mine yesterday. Ultrasound looked great. Nose bone present and low LT number. Baby is adorable of course. I'm glad I did it though I'll be the first to admit that had the results been borderline, I'd totally regret it.

We don't get bloodwork results back for a while because step 3 is another blood test between 15w & 18w and then they analyze (compare?) the results of the two blood draws to make the final assessment.

It was really good for me to get a peek inside because I've been so sick that I've been regretting getting pregnant. I've been pretty emotionally down about it all but seeing the baby definitely gave me a boost.

It was also an interesting experience because this time I went the private clinic route for both the ultrasound and bloodwork. In Canada (as you've probably heard all to often in the US lately!) we mostly only have public health care but in Quebec we are slowly creeping towards a two-teir system and you can choose to pay for some services at stand-alone clinics. It was deluxe! They even warmed the jelly! And the blood test technicians were in a good mood! In principle, I support our public system but it made my day to "cheat" a little yesterday.

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Old 04-08-2010, 12:14 PM
 
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Just want to add my experience to this thread:

My brother-in-law has Down syndrome, so I am automatically at a higher risk than most people. My mother-in-law was 39 when she had him. (A surprise 5th baby conceived on BC!)

With DD, we did the first-trimester screening (took two ultrasounds for them to get the measurements, though, thanks to an uncooperative babe) and my odds came back 1 in 40 for DS. They called me into a special office to tell me, completely freaked me out (I was alone, DH couldn't make the second ultrasound apt) and then sent me on my way. It suuuuucked. We had the level II ultrasound and everything looked fine, so we decided to just hope for the best. And DD was born healthy.

I SWORE I wouldn't ever do that screening again.

And then I miscarried in September.

When I got pg in January, I was completely unconvinced I was really, truly growing a living baby and the idea of an ultrasound at 12 weeks was too tempting to pass up, so I opted in for the screening again.

Again, it took two ultrasounds to get the measurements and again, my odds came back not so great: 1 in 57. Like before, the ultrasound measurements were "within the range of normal", but my bloodwork and family history dropped me way down.

And again, we're going to do the level II and go from there. The results won't change what we do, but I would like to be prepared if the baby has medical issues. This time around, however, I am MUCH less freaked out, in part because it turned out to be a false-positive last time and in part because I've talked more with my in-laws about Downs over the years and it's not as foreign to me.

Still, it's mildly stressful. If amnios were risk-free, I would do one in a heartbeat. But as it is, we'll just wait to see what the next ultrasound brings. Sigh.

Anne - Wife to DH, mom to DD (5/08) and DS (10/10).
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Old 04-08-2010, 11:40 PM
 
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Nope, not doing it. Actually I haven't even had an ultrasound yet. My OB and MW don't do them until 20 weeks. They actually both feel that the 20week ultrasound gives much more actual information than anything else.
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Old 04-10-2010, 12:30 PM
 
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I had mine done last week....we would keep the baby no matter what.

I did it because I had some complication the week before and just wanted to know my baby doing well via the ultrasound.
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Old 04-11-2010, 12:51 AM
 
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Nope, I'm not doing it...but then again, I'm not doing the majority of the offered tests. No triple-screening, no ultrasound, no GD, no GBS...can't think of the others off the top of my head, but pretty much everything besides blood typing, RH typing, and Hematocrit/Hemoglobin/Iron, I will refuse Yup, I'm a difficult patient, but my midwife loves me The problem is that I will only have her till 20 weeks because I'm moving to Italy with my husband (we're PCS'ing) and will need to find a new midwife there

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