Anyone here opt out of all the screenings?

[sarahsthreads]

So I'm "advanced maternal age" (makes me feel so ancient!) and my midwife was really pushing for me to do the first trimester screening. I opted out. As far as I can tell it simply gives you the probability that your baby could have a number of very specific issues, and as we would not do anything with this information besides worry it made no sense to me to obtain it.

Now of course I'm supposed to start thinking about the second trimester screen. Again, I think I'll opt out.

But I just want to be sure I'm not missing something, because everyone I've spoken to (midwives, nurses, ultrasound technician (had a little scare and got extra pictures out of it)) seems to think I'm crazy to not want these screenings.

So, what would I do with all the extra information? I mean, there's nothing to be done besides either terminate (not an option for us for any diagnosis) or wait and see and deal with whatever happens. Anything really serious that might require a specialist or delivering at a better equipped hospital should be picked up on the 20 week ultrasound, right?

What am I missing?

Sarah :)

[rin]

The only thing I can think of is that for some things, if you find out earlier you can make a decision about having in utero surgery (like some kinds of spina bifida can be corrected in utero). Also, I think (?) the first trimester is more accurate than the second trimester screenings, unless you go for something invasive like amniocentesis.

[georgiegirl]

I did the NT scan (w/o bloodwork) and the materniT21 blood test. It's a new test that tests for the trisomies and now a few other sex related chromosomal problems (like Turners) with 99% accuracy. And they detect Y chromosome too. I wanted peace of mind since I will be 39 when the baby is born.

It's a personal decision. I opted out of all testing with DD (7+ years ago at age 32).

[Melaine]

I opted out of everything optional. I think I would do so again unless I had some red flags that might suggest a problem. Even then I would probably do some research because like you we wouldn't terminate regardless. (So many people I know have had questionable or concerning tests results only to realize a little down the road that everything was completely fine...that also colors my opinion on these kinds of screenings).

[lizzywednesday]

If something comes up on the full-anatomy scan, yes, there's still plenty of time to explore treatment options and other things. It's what we went through with my DD when her heart defect was diagnosed.

It's no less stressful, by the way, than if the issues were discovered after birth. (It may soften the blow so you're not dealing with the intellectual issues at the same time as the emotional ones.)

As for screenings - they don't detect hard numbers. They SCREEN and they give you odds. In order to get actual numbers you need to collect actual fetal cells, either through CVS or amnio. It's my understanding that the materniTi21 test has better accuracy than the NT screen because it processes the blood sample differently.

I don't see why one wouldn't be able to opt out of screenings regardless of age. My SIL is also AMA this pregnancy, but she is going through genetic screens/testing for her own peace of mind. If the screens/testing will NOT give you peace of mind, I don't see the point.

As for fetal surgery, well ... we've met kids who had spina bifida surgery in utero at CHOP reunions. Their outcomes and CHOP's info is available here:

http://www.chop.edu/service/fetal-diagnosis-and-treatment/publications/chop-publications-spina-bifida.html

[klwa]

I was advanced maternal age with my youngest, and opted out of all screenings except the Level 2 ultrasound. The doctor wasn't a hard sell at all this time. (Same doc with DS almost had me in tears with how hard she pushed for 1st trimester screening, then turned as she was walkign out the door & said "I've always refused, too.") However, when I went into the L2 ultrasound, the doctors there were incredulous that I had turned everything down. REAL hard sell on doing an amnio, even after they laid out the numbers for me. (Basically, the likelihood of a miscarriage was almost as high as there being any issue if the ultrasound didn't show any markers for anything....) And, DD is here & fine. Glad I stuck to my guns.

[scrooks]

I opted out my first pregnancy (I was 30 and at low risk). They ended up detecting major life threatening issues at the 20 week ultrasound. We have never opted out of anything since (accept amnios- I have never had one). Obviously we have our personal reasons for testing. On the flip side one of my good friends is pg with her 3rd. She is 34 and opting out of everything. It's a very personal choice. I agree with others ... Some of the tests are SCREENINGS so they may end up making you more nervous when nothing is wrong. I think that tends to happen more when you are AMA.

[KLD313]

I was AMA for both pregnancies and did no screenings. I had the initial blood work done on myself but that was it. I also did the 20 week ultrasound. For my second pregnancy I didn't even have the first trimester ultrasound.

[Gena]

I refused everything except ultrasounds.

I had my first ultrasound at 9 weeks for size and dating. (My OB and I disagreed on the date of conception - I was right.) At that time we found that the baby had a cystic hygroma (fluid-filled mass behind the neck) and was given a 50% chance of surviving past the 2nd trimester. We were sent to a high-risk specialist. I told my OB and the specialists that termination was not an option for us. I refused all blood tests, amnio, and CVS. We had to shop around for a specialist who would respect our beliefs and accept that I did not want any tests other than ultrasounds to monitor the condition. I had several Level 2 ultrasounds done at the local Catholic hospital.

The cystic hygroma resolved in the 2nd trimester, although DS still has a small cyst on the back of his neck to this day. He was declared healthy at birth.

Later we learned that DS has multiple disorders - autism, albinism, and an extremely rare chromosome microdeletion. None of those are things that would have shown up during prenatal testing.

[sarahsthreads]

If something comes up on the full-anatomy scan, yes, there's still plenty of time to explore treatment options and other things. It's what we went through with my DD when her heart defect was diagnosed.

It's no less stressful, by the way, than if the issues were discovered after birth. (It may soften the blow so you're not dealing with the intellectual issues at the same time as the emotional ones.)

OK, this makes me feel better about opting out. I imagine no matter when you find out there's an issue, it's incredibly difficult to process and handle. I feel like I could handle things better with 20 weeks to go than 28 weeks, though, for some reason.

Sarah :)

[todzwife]

I opted out of everything but the 20 week anatomy scan.

[Nemesia]

I'm AMA (39) and am opting out of everything except the 20 week scan too.

I'm also due in August! This is my first pregnancy. We adopted our twin daughters at birth 7 years ago.

[Snow mom]

I did the NT scan (w/o bloodwork) and the materniT21 blood test. It's a new test that tests for the trisomies and now a few other sex related chromosomal problems (like Turners) with 99% accuracy. And they detect Y chromosome too. I wanted peace of mind since I will be 39 when the baby is born.

It's a personal decision. I opted out of all testing with DD (7+ years ago at age 32).

I opted out with DD and for some reason decided to do the NT scan this pregnancy (I'm 33). It was the worst decision I've ever made. Anyway, I ended up doing the M21 after that and this is what I'd recommend if you want to avoid tests with risk but still would like some info. The M21 seperates fetal DNA from your own blood and tests for T21, T18, and T13. It's pretty accurate although like most of these screens it tends to have a bit of a false positive rate (to cast a wide net of detection). If you don't want to know though I would just decline the additional testing.

[okinawama]

I opted out of everything but the 20 week anatomy scan.
This was me as well. I wasn't AMA, but I did opt out of the initial screenings.

[Indianamom2]

I wasn't AMA with either of mine, but we did have fertility issues with DD. I opted out of all the extra testing as far as I can recall. We wouldn't have terminated regardless, so I always had the thought in my mind that if there was anything major, it would be caught on the later u/s's and we'd be able to do more testing if and when it became an issue.

[essnce629]

I opted out of everything as well, except for the 20 week ultrasound. Mine were both planned home births though so there was no pressure from my midwives for any testing and it was all optional. I was not AMA though-- I was 21 and then 27 years old.

[SnuggleBuggles]

I had a 20w u/s and that's it. Too many false positives and anxiety with the screening, for me.

[hellokitty]

I had a 20w u/s and that's it. Too many false positives and anxiety with the screening, for me.

:yeahthat: Same here.

[sweet_pea]

I opted out of all the optional testing and didn't even have an ultrasound (but I was low risk and 27). Terminating the pregnancy wasn't an option for us, either, and knowing me, I would have just spent my entire pregnancy a nervous wreck if something didn't look quite right.

[AnnieW625]

With DD1 I had all of the tests, except a amnio. . I was 28 yrs. old. I had an ultra sound at almost every appointment (the machine just always happened to be in the room), and had a second long ultra sound at 32 weeks to make sure the baby had moved up because I had placenta previa.

With DD2 I had a nuchal fold test, blood work related to the nuchal fold test, then the AFP test, and the 17-20 week ultra sound. That was it. The OB used a little heartbeat detector to listen to the baby's heart beat at each visit. At first I thought I wanted every little test possible and an u/s at each appt., but in the end it ended up being okay with the tests I did have, and I was still able to be at ease once I didn't get any AFP results back. I was 32 when I had DD2. I also did not go to genetic counseling, sitting through that again would have been way worse IMHO than having the blood work done.

If we were to have a 3rd (which we are not) even now at almost 36 I think I would want at least everything I had with DD2.


....... I feel like I could handle things better with 20 weeks to go than 28 weeks, though, for some reason.

Sarah :)

there is absolutely no gaurantee there, which I will explain below. I tend to be a tad pessimistic about all of that though, but based on my experience.

I was 31/1/2 when I got pregnant with baby 2. I had an internal wand exam at 7 weeks (first come in and get registered, and meet with mid wife exam) and the baby was small, but the RN who did the u/s said oh sometimes this happens. I then don't recall if I had any other blood tests in the first trimester. I was not given the options to have any other tests like a nuchal fold or a CVS test.

10 weeks or so go by and I have my long u/s., and for some reason going into the exam I had a feeling I didn't want to do the AFP bloodwork, I don't know why, maybe I knew something was wrong (I didn't feel the baby move much at all, but the midwife did do a u/s a week or so before and said the baby was moving just fine) and or maybe I just didn't want to admit that I was having feeling my baby wasn't healthy so I didn't do it (I remember posting a very similar question here before I finally decided to opt out of it). I went through this phase though after I knew that my baby wasn't going to make it that I should have done it. I felt guilty and wished I would have done it so my OB would have gotten a fricken idea there was something wrong and not waited 3 or 4 weeks to get me in for the echocardiogram (after finding a small hole in the heart at the 17 week u/s, and passing it off as nothing) to show me that my baby wasn't going to make it. I found out my diagnosis at 21 weeks, and as much as I hate to say it I would have much preferred to have that diagnosis even a month sooner, but the end of the first trimester would have been a little easier as I would have been way less conected to the baby.

Results ended up being verified by an amnio.

[swissair81]

I opted out of the genetic scans. I did have multiple u/s because of uterine blood clots and my anatomy scan. I seem to have a chronic progesterone deficiency and being an ostrich about something I know could make me miscarry doesn't help, but I wasn't looking to find something wrong with my babies.

[daniele_ut]

I opted out of the routine screenings in all 4 of my pregnancies and I was 35 when I had Cadence and a few days shy of 39 when I had Daniel.

I reasoned that we would not have terminated for a poor prenatal diagnosis anyway and many of the more serious issues would be evident on the anatomy scan. That said, because I was only 29 and not high risk in any way we only had 1 ultrasound when I was pregnant with Kiely and her birth defect was not discovered then. If I'd had repeated ultrasound it likely would have been caught but that would not have changed the outcome.

In my subsequent pregnancies I was more closely monitored for my own peace of mind, not because the birth defect had a chance of recurrence (Amniotic Band Syndrome is not genetic). My anatomy scan with #4 revealed complete placenta previa and suspected placenta accreta, which led to a pelvic MRI at 28 weeks (definitely not routine screening!). I did end up having placenta increta but nothing in the routine screenings would have indicated that.

[Liziz]

I wasn't AMA, but I opted out of everything except the 20 week ultrasound -- and even on the ultrasound, we specifically requested to not be told if there was a single marker (I think that's what they're called)....we only wanted to be told if there were several. Our reasoning was that we weren't going to terminate no matter what, and we didn't want the remainder of the pregnancy spent in stress and worry.

[TxCat]

The second trimester screen is a decent one for spina bifida, and you can do fetal intervention for some spina bifida cases now. It probably would be picked up on a second trimester scan, but the combo of bloodwork and scan increases the chance that it gets picked up early, and you can possibly seek a surgical repair prior to delivery.

Personally I did all the screenings available to me and then some. I am AMA. But, I also work regularly in high-risk obstetrics and fetal intervention and that definitely shapes my perspective.

[daisymommy]

We have opted out of all screenings for all of our babies. We only did one ultrasound at 20 weeks to check for major problems.
A Christians, we knew that we would not terminate a pregnancy, and the stress of second guessing if everything was okay, and worrying over it if there were false positives just was not something we wanted to do. I would have rather dealt with a surprise problem after the birth, than had it ruin the happiness and joy of looking forward to the birth of our child.


Sent from my iPad

[sarahsthreads]

Thank you all! I feel like I have a few new things to think about in regards to the second trimester screening. Not sure if I will do it yet or not, but picking up something that is potentially correctable in utero sits better with me than screening for something that cannot be changed.

And I really want to thank those who shared their stories about difficult results from these screenings and tests. I can only imagine how painful and heartbreaking that news must be. :hug:

Sarah

[jjordan]

We didn't do the screenings. I'm also advanced maternal age, I think, at 35 (and will be 36 on the due date).

[Edensmum]

I haven't read the whole thread, but I thought I'd give my 2 cents quickly. I never do the first tri screenings. I don't do a 36 week check for size ultrasound but I do the twenty week one because there are things that would change the type of delivery, like spinabifida.
You don't have to do any of them.
I pretty much do that and the diabetes screen. I never had a vaginal exam at all with the last two pregnancies. I had to have sections so it just wasn't needed.

[Simon]

I insist on a dating u/s since I've had 2 preemies and I want a very accurate EDD (well, as close as possible), we had a 20 wk u/s but not a high level one and we refused all the additional blood work and amnio or other invasive screening. I moved into AMA territory at the end of the pg. I didn't want to worry over anything we couldn't change.

That said, and factor in we aren't planning on any more babies, but it looks like Ds2 might have a genetic condition and I would strongly consider testing for this before or at birth if it was an option with a future pregnancy. Not because we'd terminate, but because it would factor into how we treat nearly everything from jaundice to newborn feeding issues and I know it would set in motion a number of fairly non-invasive and painless screenings that we'd want to do with high level u/s or very shortly after birth with the goal of being more aggressive with preventative health care.