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#1 of 48 Old 11-17-2008, 03:19 PM - Thread Starter
 
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OK so from what Ive read about AFP testing, (an optional genetic test coming up for us all in the next few weeks), of the positives, 80-90% of them are false positives, proven through further testing.

Personally Im pretty discourage from taking it, but my husband wants it specifically to identify downsyndrome. Im wondering how may tests test positive to begin with. I'd hate to be sent through a bunch of invasive and dangerous tests to find out its nothing. What is everyone doing about the test?

Also, I might be somewhat unique in that, if we were sure the baby would be downsyndrome, we would terminate the pregnancy...the hard part is being sure.
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#2 of 48 Old 11-17-2008, 04:08 PM
 
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I have never had the test done. i have always thought wht difference did it make. IF it were possitive, it would not change anything. We would still be having a baby, so why do the test.

So we will not get the test again.

nurse, mama, doula-in-training to J-14, J-13, S-7, S-4, and P-2(born at home)
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#3 of 48 Old 11-17-2008, 04:29 PM
 
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i'm the same way...we've never had any of the early testing they offer either...it just wouldn't change anything for us.

also, my mother had a bad amnio when i was a teenager, so i've always known that i wouldn't go for the further testing they would push on me if i had a positive with any of that stuff. in the end, like so many things, it's just a personal choice.

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#4 of 48 Old 11-17-2008, 04:43 PM
 
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I had a quad screen with my son and this time will have an NT scan. It's my nature to need to know everything I can so for me it's not a question. But this is a very personal question.
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#5 of 48 Old 11-17-2008, 05:03 PM
 
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They asked me about it at my last doctor's visit. I declined.

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#6 of 48 Old 11-17-2008, 05:30 PM
 
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I'm 35 and will be almost 36 when this bean is (hopefully) born. I will NOT get an amnio but will be getting the sequential screen test (two part). I wouldn't terminate the pregnancy regardless but would like to have any and all information to be prepared.

Happy mama to DD (8-11-05) and DS (6-5-09) and married to my best friend and love of my life since 10-13-01.
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#7 of 48 Old 11-17-2008, 05:32 PM
 
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I didn't get it last time and don't plan on it this time. It would not change anything for us.

Rachel, proud Army wife to my superhero.gif and SAHM to my crazy boys jumpers.gif... Trevor 4/08, Trenton 6/09 and Travis 10/10
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#8 of 48 Old 11-17-2008, 05:39 PM
 
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I think I'm leaning toward getting it. I would decline an amnio, unless the quad screen said there was a high chance of something being wrong (like, higher than 50%).
I would, however, request a detailed u/s (can't remember what those are called) to give us more information. I would want to be prepared for the birth, to have proper medical attention for the baby.

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#9 of 48 Old 11-17-2008, 05:41 PM
 
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I don't want the AFP or the amnio because a) I wouldn't terminate and b) risk of miscarriage. That said, a positive WOULD, by definition, change things simply because it'll be a lot of added stress, possibly needlessly. There are a lot of false positives for AFP, or so I've read.

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#10 of 48 Old 11-17-2008, 06:52 PM
 
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We are undecided.

Last pregnancy I did none of the blood tests but had a detailed u/s at 20 weeks. We were very comfortable with that decision and had little pressure from the midwives. This time we had IF and the RE is very much into all the tests, etc. I will have some resistance to decline, but we might anyway. He recommends a NT scan between 11 and 13 weeks and two blood tests,PAPP-A, and beta HCG at the same time. He does not recommend either the scan or the blood tests without the other- more info when viewed together. He follows this with the quad screen at 15 weeks, and then a detailed u/s at 20 weeks.

It's such a change from the care of the midwives last time. In some ways it's comforting and others concerning. I am staying under his care until I have surgery to remove my gall bladder (gall stone blocking duct and causing pain) in the 2nd trimester. After that we hope to transfer care to the birth center again or possibly a home birth midwife. I suppose it depends on when we transfer and what tests may or may not have been done already. I'm kind of surprised to find myself just going alone with all the monitoring and tests this time, but it's taken SO long to get pregnant that it's also oddly reassuring.

Long enough for an ambiguous answer?
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#11 of 48 Old 11-17-2008, 07:40 PM - Thread Starter
 
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OK so to clarify...If you were to do some form of genetic testing, which one would you choose, or not choose and why? Is there one in particular you feel is shoddy or one that takes the cake?
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#12 of 48 Old 11-17-2008, 07:48 PM
 
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OK so to clarify...If you were to do some form of genetic testing, which one would you choose, or not choose and why? Is there one in particular you feel is shoddy or one that takes the cake?
IF we do any of the testing, we will do all of the above as described in my previous post. If we opt out, we will do none of the blood tests but will do the detailed 20 week ultrasound. I would not do a CVS or Amnio unless the results of the NT and early blood tests AND the quad screen all come back highly suspicious. In any case, I doubt we would terminate. DH and I disagree about this a bit though.
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#13 of 48 Old 11-17-2008, 07:58 PM
 
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First, think why do you want genetic testing? Are you particularly at risk for having a child with x disease?

Case in point: a pretty nasty genetic disease runs through DH's family, but he seems to not be a carrier. As my uncle does geneology, I'm quite certain that none of my ancestors are of the high-risk population for this disease (Ashkenazi Jews) thus it is incredibly unlikely that our kid could get it. Neither of us are at risk for anything else, and I'm 24 so Downs is really unlikely.

Thus, no genetic testing. I'm agreeing to the NT scan because I want the anatomy ultrasound anyways. Since it's a simple measurement on a screen, why not?

Ashley, Pagan treehugger.gif mama to E (6/09) and my beautiful hbac.gif baby T (4/3/12)
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#14 of 48 Old 11-17-2008, 08:42 PM
 
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I'm agreeing to the NT scan because I want the anatomy ultrasound anyways. Since it's a simple measurement on a screen, why not?
My understanding of the NT is that it too has a high false-positive rate, which if you get one would likely lead to an amnio and afp testing. Not to mention the stress of it all.

I had a daughter with a neural tube defect and I'm opting not to do the NT. The truth of the matter is that if you wouldn't abort, then getting shaky information (or even good and reliable information) early on will likely have a negative impact on your pregnancy, and on you. Those things always show up at some point anyway, so why borrow trouble? We found out about my daughter's anencephaly at 31 weeks; she was born at 33 weeks. We had enough time to process, make plans for her birth and burial and then enjoy the time we had left with her. But I wouldn't want to know early on-- I'd rather bond completely.

Most moms learn about their children's ntd's at a routine 16 or 20 week ultrasound when they thought they were just going to learn the baby's sex. Everyone's different, and each pregnancy is different, but I always encourage friends to really think through why they are getting any testing done in the first place. It's possible you'll learn something now that you might prefer to learn later.

I'm now about 8 weeks and have had 3 ultrasounds so far, but after next weeks appt. I will go back to my more normal way of doing a pregnancy, which is to assume everything is good, unless something indicates it's not. btw, the reason I've had so many dr appts this time around is because I just need to know that everything is ok before we start telling anyone. In fact, you all are the first people I've told so maybe I'll post an intro.
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#15 of 48 Old 11-17-2008, 08:47 PM
 
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thank you for sharing. Very heartfelt.

I'm scared about these tests because I know I'll worry my head off- I guess I'd have to decide first if it would make a difference. DH and I are really split on that. Not fighting by any means, but just not totally sure.

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#16 of 48 Old 11-17-2008, 09:11 PM
 
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I am doing the NT scan, which will also be my first u/s. It actually does not seem to have a very high false 'positive' rate - but you also need to look at it as not a negative or positive, but just a 1 in xxx number that you get - its a screen, that's all. So if you are high in age, it adds to your 1 in xxx number no matter what the results, so I guess some false positives might result from that. Its best to just look at your risk from just your age, and then your adjusted risk after the scan/blood test - if its higher, than that says something. If its lower, that is good news.

I am not sure if I'd terminate w/ DS. I think I'd have to find out before I could make that decision. Since I had a previous loss, I'm not particularly connecting to the pregnancy, and it does seem I get pregnant easily, so in some ways wanting to 'stack' the genetic cards a bit for our (probably) only child is tempting. I know you can't plan other issues, a kid could have head trauma and become a vegetable at any time, so saying you want a low-risk kid is pretty ridiculous, but at the same time its hard not to try and control the few things you can. Still, I don't know what I'd do. So I am doing the scan and hopefully my risk is low and I don't need to worry about what I'd do.

At this point, I'm just hoping I have a baby in there - I found out about my m/c last time at this same U/S.

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#17 of 48 Old 11-17-2008, 09:36 PM
 
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moonglowmama: Even were I to get a heightened risk from the NT scan, I wouldn't do the amnio. I'm really not worried about it.

Ashley, Pagan treehugger.gif mama to E (6/09) and my beautiful hbac.gif baby T (4/3/12)
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#18 of 48 Old 11-17-2008, 10:10 PM
 
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Not doing AFP test. If my baby has down syndrome, some other genetic disorder, or even something fatal, it would not change anything. Plus I wouldn't want the stress of the seemingly common false-positives.

I have one wonderful husband and one wonderful little toddler boy!
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#19 of 48 Old 11-17-2008, 10:59 PM
 
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We are doing the NT scan, and the bloodwork, if something comes back positive we will have to weight the risks of further testing. I am mostly just excited for the ultrasound because they said it was a long one, so we should get to see lots of our baby, plus it is with the 3D machine at our clinic - wheeeeeeeee!
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#20 of 48 Old 11-17-2008, 11:09 PM
 
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I wasn't going to have the 12 week NT ultrasound because I wouldn't terminate the pregnancy no matter what we found out, so I figured there was no point. But then a friend who is an OB needs a few more cases to get qualified to do the NT screens and offered to do it for free and I couldn't resist a free chance to look at my baby. It's tomorrow so fingers crossed everything will look normal!

Jessica, Wife to Owen (6/7/03), mom to Amina (9/20/06) : and Colm (5/30/09) :

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#21 of 48 Old 11-17-2008, 11:28 PM
 
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Well, from what I understand there are other reasons to do the 12 week ultrasound, like to make sure that all the bits are in the right places. I would terminate for something like, say, no kidneys, because it's incompatible with life. And I think 12 week is general anatomy, not just the NT scan.

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#22 of 48 Old 11-18-2008, 01:44 AM
 
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I'm not quite sure exactly what the AFP testing is. This is my fourth pregnancy and I've always declined all the testing. I would not terminate so I figure there is no sense getting myself worked up especially when there are false positives.

However, now I find myself in a new situation. I had a regular ultrasound last week for other reasons and the tech could not help but notice that the baby had an increased nuchal transparency. She said it is a marker for chromosomal abnormalities and now they want to send me for further testing. I guess it is too late to live in ignorant bliss so I guess I'll do further testing to see if I can find out that it's nothing or less of a risk or more of a risk...who knows. I won't do CVS or amnio but I'm thinking maybe some further blood tests or better ultrasound. I'm not even sure what the options are yet. They are referring me to a maternal fetal medicine specialist but I'm still waiting for them to call my with my appt.
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#23 of 48 Old 11-18-2008, 02:13 AM
 
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I'm 35 and will be almost 36 when this bean is (hopefully) born. I will NOT get an amnio but will be getting the sequential screen test (two part). I wouldn't terminate the pregnancy regardless but would like to have any and all information to be prepared.
Ditto. Plus my son has spina bifida occulta (which is common and no big deal) but apparently it increases the risk for other children to have SP.

I declined the amnio but we are doing the new screen they have and the u/s w/the perinatalogist. (I think that's what it's called?)

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#24 of 48 Old 11-18-2008, 03:13 AM
 
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OK so from what Ive read about AFP testing, (an optional genetic test coming up for us all in the next few weeks), of the positives, 80-90% of them are false positives, proven through further testing.

Personally Im pretty discourage from taking it, but my husband wants it specifically to identify downsyndrome. Im wondering how may tests test positive to begin with. I'd hate to be sent through a bunch of invasive and dangerous tests to find out its nothing. What is everyone doing about the test?

Also, I might be somewhat unique in that, if we were sure the baby would be downsyndrome, we would terminate the pregnancy...the hard part is being sure.
I would be afraid of getting a false positive and killing a perfectly fine baby. and the stress of thinking something might be wrong, or even the not-knowing can damage your bond to the baby.

Can someone explain to me how it's easier to deal with terminating than allowing a baby to die naturally, if there's something seriously wrong? Don't people wonder what if the baby had lived? I mean, what if your child has other special needs?

I don't do any of the testing. This time we're not doing the 20 week ultrasound. I know more than I did the first time around.

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#25 of 48 Old 11-18-2008, 03:26 AM
 
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If you get a false positive (which from what I understand, the new screening they offer are much more accurate) then I think you can get an amnio which isn't wrong.

As for if/how it's easier to deal with the loss if you go the abortion route or "natural" death route, I can't help you with that and I pray I don't have to face that. Obviously everyone feels different and I don't judge someone decision.

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#26 of 48 Old 11-18-2008, 11:06 AM
 
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If you get a false positive (which from what I understand, the new screening they offer are much more accurate) then I think you can get an amnio which isn't wrong.

As for if/how it's easier to deal with the loss if you go the abortion route or "natural" death route, I can't help you with that and I pray I don't have to face that. Obviously everyone feels different and I don't judge someone decision.
yeah, there are no false positives w/ CVS or amnio. I myself, would have trouble carrying a child knowing it has 0 chance of survival outside of the womb. With Down's, as I said before, I am still not sure what I would do. With a non-compatible w/ life diagnosis though, I would want to have the time to grieve, get pregnant again, etc., rather than take a doomed pregnancy to term. Perhaps if I already had children, but I'd rather not have my first pregnancy go that far w/ that result I guess. I bet a lot of my feelings on this are because I haven't gone through a successful pregnancy yet. And as one gets older the chances of issues like that increase.

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#27 of 48 Old 11-18-2008, 01:18 PM
 
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With a non-compatible w/ life diagnosis though, I would want to have the time to grieve, get pregnant again, etc., rather than take a doomed pregnancy to term.
I know this is (happily) speculation at this point, but I think if you get a diagnosis that is fatal, you will be grieving for years, so the duration of the pregnancy is small by comparison. Besides, most babies with a fatal neural tube defect don't make it to what we would consider full-term (40 weeks) but either die before that or are born at an earlier gestation, usually because your uterus measures much larger than dates, and it just is almost unheard of to make it much past 35 or 36. I made it to 33 weeks and was measuring over 42. (By comparison, the most I ever measured with my healthy pregnancies was 39).

I hope none of us will need to deal with these questions in real life for this pregnancy, but it is helpful to think through them, I suppose.
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#28 of 48 Old 11-18-2008, 01:22 PM
 
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I know this is (happily) speculation at this point, but I think if you get a diagnosis that is fatal, you will be grieving for years, so the duration of the pregnancy is small by comparison. Besides, most babies with a fatal neural tube defect don't make it to what we would consider full-term (40 weeks) but either die before that or are born at an earlier gestation, usually because your uterus measures much larger than dates, and it just is almost unheard of to make it much past 35 or 36. I made it to 33 weeks and was measuring over 42. (By comparison, the most I ever measured with my healthy pregnancies was 39).

I hope none of us will need to deal with these questions in real life for this pregnancy, but it is helpful to think through them, I suppose.
yeah, I guess I was thinking of Trisomy's (18, is it?) where they can live for a little while perhaps after birth, but not long. I have already suffered one miscarriage, so I know grieving will always be with me, but I tend to think that losing the pregnancy earlier (even by choice) is easier than later.

but yes, I hope none of need to deal w/ these questions!

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#29 of 48 Old 11-18-2008, 01:37 PM
 
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Emily so you dont feel alone. We are 16 weeks along with #5 and will be doing the AFP in two days. We've already done the NT scan and bloodtest and received screen negative results which was reassuring. We also decided early on to terminate should downs or trisomy be detected. We will be doing the 20 week level 2 ultrasound also. If at any point a amnio is needed we will do that also. While going thru the testing is sometimes nerveracking we do not regret the decision to do it.
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#30 of 48 Old 11-18-2008, 09:31 PM
 
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I'm not quite sure exactly what the AFP testing is. This is my fourth pregnancy and I've always declined all the testing. I would not terminate so I figure there is no sense getting myself worked up especially when there are false positives.

However, now I find myself in a new situation. I had a regular ultrasound last week for other reasons and the tech could not help but notice that the baby had an increased nuchal transparency. She said it is a marker for chromosomal abnormalities and now they want to send me for further testing. I guess it is too late to live in ignorant bliss so I guess I'll do further testing to see if I can find out that it's nothing or less of a risk or more of a risk...who knows. I won't do CVS or amnio but I'm thinking maybe some further blood tests or better ultrasound. I'm not even sure what the options are yet. They are referring me to a maternal fetal medicine specialist but I'm still waiting for them to call my with my appt.

My thoughts and prayers are with you.



We did decide to do the NT screen. We're scheduled for next Wednesday. I'm nervous, and a little scared, but I do trust my ob/gyn. She was very helpful in explaining that "false positives" aren't as rampant as I was believing, and if I were to have an increased risk, that the CVS or amnio is absolutely accurate. I think given the kind of job that I have (high school band director) and the amount of time it legitimately takes during the fall, we'd be better off knowing and being able to plan should something go wrong.

But it's terribly scary to worry about your baby, even when it's only 2 inches long.

Married to my best friend, expecting #1 6/09. Little angel came early- 4/10/09, 2lbs 5oz. Lilah Grace:
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