Prenatal testing question - for those who would terminate

[pamamidwife]

This is a question for those who would terminate a pregnancy if there was something "wrong". I am wondering why do most people not choose to have a chorionic villus sampling done earlier in pregnancy, rather than go through the inaccuracies of the AFP, then the u/s, and finally an amnio? By the time you're getting results most women are around 21 weeks pregnant, vs 12 weeks with the CVS.

I'm not anti-choice. I am just curious as to if there is a definite posibility that a person would terminate, why wait? It seems to me, the earlier the termination, the less traumatic it would be re: all the waiting, not knowing, etc. later in pregnancy.

Please do not take this as a judgement. I'm not judging anyone. In fact, it's nice to know what you'll use the info from prenatal testing for before doing them.

[Piglet68]

I'm not sure that CVS was offered to me. I recall reading that it is quite a bit riskier than amnio and that it is harder to find people who are well-trained and experienced in doing CVS. I think if I had any family history of genetic issues I might look into it more, however. I agree that the earlier the better. I hope early testing becomes more readily available.

[Jane]

If I'm keeping the baby, I'd like to not expose it to ultrasound. The blood test is completely harmless to the fetus. The CVS exposes what I hope is a healthy baby to ultrasound.
If I got a presumptive positive on the blood test, I'd go straight to amnio to minimize exposure (ie level two ultrasound).

[pamamidwife]

But if you get an amnio, you have an ultrasound at the same time.

I guess I'm curious because the AFP is so horribly inaccurate - it's just a screen, not diagnostic and has a high rate of false positives. It seems like it creates so much fear and trauma until a more diagnostic result can be given.

[2BMamaof3]

I for one was not aware of CVS. Hmmm. I never really researched it much. I opted to NOT do the triple screen test due to its inaccuracies and because I knew I would not be willing to have an amnio. However, I guess I've always counted myself in the group who would be willing to terminate if something was "wrong" even though I didn't test this last time (I did the triple screen with my first two).

What sorts of risks accompany CVS?

Abby

[Jane]

I know the amnio involves ultrasound. That's why it and CVS (with ultrasound) are my second choice.
I would skip the usual level 2 ultrasound that's between the AFP and the amnio and go straight to the amnio to limit ultrasound exposure.
My goal is to ahve a pregnancy without ultrasound or doppler at all.

[Artisan]

I know I have read of several cases of people whose babies had limb deformities as a result of the CVS test. I think some people may also be put off because it can be painful.

[Changed]

Pam, I wouldn't terminate but I didn't see the relavance to answer the question. Sorry if this is unwanted. I'm interested in what you think about this issue though. I was never offered CVS even with my history. I've heard it's risky? I would ave liked to know something this time asap just to relieve the stress. I had to wait for my afp and level 2 after at 17 weeks. Now i'm seeing the cardiologist because they can't tell if baby has a normal heart. It sure would have been nice to have a chromo test at 12 weeks and then continue a normal pregnancy without the speculations surrounding my past. BTW, not sure if it makes a diff but we had already had all the testing to make sure we weren't carriers.

[Clarity]

The CVS, when I last looked did have a greater risk of miscarriage for a procedure done without suspecting any problem through US or AFP. I think that concerns me more then the US, although that does as well - but if I suspected the propensity of a problem from medical history enough to have a CVS, I'd be ok with the US. It also is not as widely available because it is more difficult to perform. Advances are being made and I think it's not that far off when this sort of diagnosis can be done in the 11-13 window with the things I'm seeing published about cell, amniotic fluid and maternal blood and urine testing. I think both parents and doctors would prefer it enormously. If you want CVS, search out someone who does them very frequently..as I recall it improves the statistics of complication or pregnancy loss by a great deal.

I always encourage people who would never consider termination to think about forgoing the AFP completely. The large amount of false + just stresses out so many parents unnecessarily.

[Lousli]

I didn't go straight to a more invasive procedure (CVS or amnio) because I am not high-risk. I'm under 35 and no previous history of birth defects. So, for one, my insurance wouldn't cover it (and it costs thousands of dollars) and for another thing, I had no reason to think that I might need to have more invasive testing. I had an AFP with my daughter, and it came back fine, and she is fine.

I opted for the first trimester screening, which is the nuchal translucency and a blood test. Togther they are supposed to be far more accurate than the AFP and can be done at 12 weeks. I got the results back at 13 weeks, and then, since they weren't good, had to make a decision about more testing. I decided to go with the amnio, which is considered both safer and more accurate at 15 weeks. I will get preliminary results in 3-5 days, and full results in 14 days. This is fairly late in the pregnancy, at 17 weeks. However, if I had opted for the AFP, i would just be taking that test, as it is usually given around 16-18 weeks.

I think most women don't go for CVS because it has risks of miscarriage and other things, it is invasive and can be painful, and most women will chose only to go for the "next level" of testing if their intial test results are not reasurring.

[obnurse]

Apricot, I don't understand your rationale. You say you are trying to avoid any ultrasound in a pg, but you would have a triple/quad screen done that is notoriously inaccurate and then skip over the u/s (which by the way I have researched and found NOWHERE has it ever been shown that u/s negatively affects fetuses) and go straight to the procedure that has REAL risk for the mother and fetus (done under u/s I might add, although I saw that you know this)

I realize that this is a 'what if' situation, maybe not exactly as you would do in your own pg. But if I had a triple screen done, I would go for the u/s if my screen was off. What if it is twins, or some other 'cause' that is apparently obvious on u/s. I have in my career seen TWO women miscarry perfectly healthy babies from an amnio. It is a real risk that should not be taken lightly. IN my entire life, I have never heard of a baby miscarried from and u/s, or had anything wrong with it attributed to u/s!

[Jane]

If I'm keeping the baby, I want no exposure to ultrasound. To break it down by scenario:
Healthy baby - blood test, good result = no ultrasound
Healthy baby - blood test, bad result, amnio = one ultrasound
Unhealthy baby -blood test, bad result, amnio, abortion

If I start with the ultrasound, every potential fetus gets one exposure. In my outline, most pregnancies would have zero ultrasound exposure.

[Penelope]

The only person I know IRL who would have terminated anything but a totally healthy, normal baby did have CVS.

For me, there are situations - a few, rare anomalies - where I would terminate. But I think the triple screen is not a useful tool since it's so inaccurate. CVS seems risky and painful and expensive to me. I had an ultrasound and once I knew the baby had an intact brain and otherwise looked ok, I was totally satisfied. (My cousin's son has spina bifida, revealed on ultrasound, and was a c-section delivery so that his exposed spinal cord wouldn't be damaged. This is the kind of thing I'd like to know about - not to terminate, but to help deliver a living baby.)

I think that there's a lot of grey area between "I only want a perfect baby" and "I am keeping my baby no matter what." Certainly people have different ideas about what constitutes a "normal" child. Maybe this grey area is reflected in the wide array of choices women make about prenatal testing.

[Piglet68]

It think the short answer to Pam's question is this:

CVS is not a well-established procedure. It carries higher risks to the mother and child. It is hard to find someone well-experienced in the procedure. It may not be available at all, or may not be covered under insurance.

[sugarbeth]

I did, actually, go straight for the amnio. I didn't trust the false positive/negative rate of the less-invasive screens. And I didn't like how if you chose the AFP-ultrasound-THEN an amnio route, then you'd be around 20 weeks when you found out bad news.

Going straight for the amnio, I got to have my big ultrasound earlier (at 15 weeks), then my amnio results only took a week, so I found out at 16 weeks that all was well.

I could've chosen CVS, but that procedure is not done as frequently as the amnio is at my perinatal center - so the amnio was the best balance of risk vs. early information for me.

[orangebird]

If I were to have testing done, especially the CVS, I would want it sooner than later. I think people wait til later because if it is early the chance of it causing a miscarraige is greater. Since it carries so much more risk than the other two and the cost is so high the doctors obviously would rather rule stuff out with ultrasound or blood test and only use CVS if absolutely needed (or shoud I say wanted as it probably can't be considered "needed"). I never wanted testing for my earlier pregnancies but if I get pregnant when my DH wants to consider more children, many years from now, I will consider some kind of testing just because of my age and therefore increased probability of problems. I don't know what I would consider aborting though. Downs? Definitely not. I would happily have a downs baby. Most preferably a healthy baby, but I wouldn't abort for downs. So I don't know. Something they can verify is uncompatable with life I would probably abort. But let me say this. I am a NICU nurse We are a level 4 nursery so we get admits from all over the region. Like 6 states or something. There are times we are all worked up for an admit of a baby that they diagnosed as having something by fetal ultrasound. Many times the ultrasound was wrong. The baby is either fine or the level of the defect is much less than they suspected. I always wonder about the babies aborted by a misdiagnosis. That really scares me and makes me so skeptical. I mean they even get sex wrong all the time. I have seen twins who were seen as a single on ultrasound. So many things seen wrong on ultrasound. And then there are the babies who come out with something wrong that they didn't see on ultrasound, so I am very wary of that. Plus all the false negatives, false positives with blood tests, it is enough to drive someone crazy. If I were going to go so far as to abort I would definitely want it confirmed by CVS, but there are alot of things that CVS can't test for so wow, what a stressful thing!

Just give me an ultrasound so I know it has a normal shaped body and I can get it out, the rest we will worry about later

[wombat]

The OB/GYN clinic at my hospital didn't want to see me until I was 12weeks. (BTW is this typical??) So by the time I went to the introductory morning and got my first appt it was too late for CVS I think. I wasn't offered it anyhow and didn't know much about it.

I saw a genetic counsellor. Because of my AMA, she didn't recommend the AFP test. I had a Level II u/s which found 2 problems which led to an amnio. Ended up being nothing at all.

[KKmama]

No offense taken, Pam.

Good cvs is not really available here, and definitely not covered by our insurance (I'm 34). However, I had a nuchal u/s at 10 wks along with the quad screen at 10 and 15 wks (quad screen is a blood test). When these 3 are analyzed all together, the false positives go way down, and they find a higher percentage of the real problems. (And there's absolutely no risk of miscarriage.) You can get pretty conclusive results at 10 wks and final results a few days after the last blood test at 15 wks. I'll do this again when I have my 3rd (and last, boo hoo) baby when I'm 37--definitely won't opt to go straight to amnio.

The other thing...I took a lot of statistics in grad school. I understand the whole false positive/false negative trade-off very well. I did the tests knowing that if I got a rec for an amnio, I'd do it, and try pretty darned hard not to jump to conclusions before I had the amnio results. It seems more sensible to do the no risk tests first to try to avoid the high risk ones.

[captain optimism]

I was pregnant at 36. I didn't want to have CVS because what I read said that it had the greatest risk of miscarriage. In fact, I really didn't want to have an amnio. I know someone who had a miscarriage after amnio. My dh was worried about the possibility of chromosomal abnormalities and would have wanted to terminate. I wouldn't have wanted to terminate, unless the fetus showed a potentially fatal illness. (Which I irrationally began worrying about!) So we were in conflict.

My midwives said that an AFP/triple test would be a screen, not guaranteed to be accurate, but that if we didn't have a positive on the screen, they would lower our risk profile. So I did the AFP test, knowing that a false positive was possible. We also did a level II us at 16 weeks. That was all reassuring and we (my dh and I) were able to agree to proceed with the pregnancy without having to do an amnio.

My reasoning was similar to KK's, though I don't understand stats with quite the same level of insight.

I don't know if I would do the same on another pregnancy. Of course if I get pregnant again my risk profile will be much higher. I guess I would want to talk about the chromosomal abnormality issues before we started TTC.

[pamamidwife]

I just wanted to thank everyone who contributed their stories and thoughts to this thread. I've always wondered a bit, and it all makes sense and puts things for me in a different light.