AFP Testing - Page 2

[sunflwrmoonbeam]

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.

[erin_brycesmom]

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.

[MangoMommy]

Originally Posted by kamane18

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?)

[Maggirayne]

Originally Posted by Emily_Lawrence

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.

[MangoMommy]

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.

[seafox]

Originally Posted by MangoMommy

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.

[moonglowmama]

Originally Posted by seafox

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.

[seafox]

Originally Posted by moonglowmama

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!

[Verygoddess]

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.

[musiclady]

Originally Posted by erin_brycesmom

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.

[TrishWSU]

Originally Posted by seafox

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!

Yes, its trisomy 18 that you're thinking of. 50% of babies with trisomy 18 are still born and less than 10% of babies born with it will make it to their first birthday, although there are some who live into their 20's and 30's but will have serious developmental delays. That is the one I really struggle with.

To the OP...if you are positive that you would terminate because of DS then just getting one test is not going to be the final answer. Getting a "negative" result with both the NT scan and the AFP (or quad screen-same test) together would indicate that there is a very low chance of your child having it. However, if either one is "positive" then you will have to face further testing to be sure (either CVS or amnio.) If it is something you are really worried about, you can get the CVS done at 11-12 weeks to (almost) completely rule it out (there's like a less than 1% chance of the test missing DS), but the test does increase your chance of miscarriage. SO I guess you have to weigh which is "worse"-the possibility of a false positive on the AFP which would lead to more testing (and stress) and possibly the CVS or amnio, or getting the CVS first and the increased risk of m/c. Although from the reading I've done there is no clear consensus on how much it increases the risk. Either way, hugs to you as there is no clear cut easy answer here-very personal choice.

[WeasleyMum]

It's funny, I just had the NT scan Wednesday, and consented to the bloodwork, but I never was worried about chromosomal problems AND we wouldn't terminate anyways. Right when we were beginning treatment for the recurring miscarriage, the same practice did a fairly in-depth query on me and the DH to determine if we had an increased risk-- the family histories and blood work on us both. They decided that we were at a very low risk for any of that stuff, based on the blood work, our histories, my age, et al. Basically whatever is causing my miscarriages is me, not the embryos themselves. (Bad body! BAD!) So it was kind of funny that they still wanted to do all this, but I guess it's just their procedure.

For the ultrasound, wild horses couldn't keep me from it, with my history... this is the first time out of 5 pregnancies that we ever got to 12 weeks. I didn't care about neck fluid, I just wanted to see the heartbeat, and the hands and feet and all that. For the bloodwork, I guess I could have refused but it was no problem to get the needle stick and I'm just not used to refusing stuff yet. (Need to work on that for later!) I mean if they had to do something to the Little Passenger that would be different, but they can take all my blood that they need, I don't care.

[ghuaghua]

I always turn down the testing because I would never terminate a pregnancy, especially not over something like downs.

[WeasleyMum]

Originally Posted by ghuaghua

I always turn down the testing because I would never terminate a pregnancy, especially not over something like downs.

I wouldn't, either, but I would want to know as far ahead of time as possible, to prepare myself... mentally, emotionally, physically.

[Amydoula]

I just declined this at my appt. on Wednesday and my midwife's response was "Good!". She said there are way too many false positives and it's a really sucky test.

[RachaelsMommy]

Originally Posted by moonglowmama

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.

These are my reasons exactly! I can't imagine aborting because of Down Syndrome. I already love my baby no matter how he/she turns out. I have a wonderful cousin with Down Syndrome. Other than having a learning disability, he lives a pretty normal life. He has to keep a close eye on his bp, but he's fine. I don't think of him as being less of a human being, and I think he deserved to live just as much as his twin sister who doesn't have Down Syndrome.

[ghuaghua]

Originally Posted by RachaelsMommy

These are my reasons exactly! I can't imagine aborting because of Down Syndrome. I already love my baby no matter how he/she turns out. I have a wonderful cousin with Down Syndrome. Other than having a learning disability, he lives a pretty normal life. He has to keep a close eye on his bp, but he's fine. I don't think of him as being less of a human being, and I think he deserved to live just as much as his twin sister who doesn't have Down Syndrome.

:

I know its partly the hormones, but I cried initially at the thought of someone aborting for that reason alone.

*sigh*

[kamane18]

While I personally wouldn't consider terminating for DS (although I might for Trisomy 18), I don't think it's fair to judge others for that decision. Some people may not have the emotional or financial wherewithal to care for a child with special needs. I have a good friend whose sister has rather severe DS. Her parents (and she) went through a LOT and sacrificed a lot to help the sister with her unique medical and educational needs. While they don't regret it, I don't know if it's something everyone is up to.

[RachaelsMommy]

I didn't say I was judging, I thought I had just as much right to my opinion as those who think aborting a child with DS is ok.

I'm sorry, but killing off those with a disability scares the crap out of me. Where will we stop? What about deaf or blind babies?

What if a baby is born fine, then is in some kind of accident and needs round the clock care like the child with DS you described, and the family isn't "up to it?" What then?

[kamane18]

I can't answer all your questions, Erin. I was merely commenting that it's not fair to be judgmental on this topic because some of the other posts made me feel badly for the OP. Like I said, I don't personally agree with terminating a pregnancy for DS but I try to understand those who say they would.

I can't see considering terminating for anything but something like Trisomy 18 - where the poor babies almost never live to see their first birthdays - but even then I'm not sure what I'd do.