Anyone opting out of diagnostic test for chromosomal and genetic testing

mjartlip · June 2010

Hey ladies,

I'm not doing the NT screening or any other testing. Are any others opting out as well?

BlondeDutchess912 · June 2010

I go back and forth with it... I have an appt wednesday and I'm waiting to see if my anxiety gets bad leading up to it. I think I want to know but I have really bad anxiety and of course no meds

I typically become obssessed with stats and risk (like I know the what percent of ppl have a mc at each week, the risk of each disease, etc) . So a test that only gives risk and percents may not be good for me, but I haven't gotten anxious enough to cancel yet... we'll see!!!!

KLResq · June 2010

I see this question a lot, and it always seems like there is an even mix of people who want the test and people who are going to abstain.

Having had my NT scan on Saturday, I am really glad I opted for the testing. However, there are many girls on here who are equally as firm in their belief that the testing us unnecessary and can lead to needless worry.

starsmaycollide · June 2010

The only testing my doctor has discussed with us is the quad screen later on. We didn't do an NT scan. We don't have any risk factors, and they did a ton of blood work as it is, and I've had two ultrasounds where everything looked normal.

I will probably opt out of the quad screen. Honestly, if something is wrong, I don't want to be miserable with worry the rest of my pregnancy. I would rather deal with that after the birth. But., that's just how I think I would handle it better.

an02102 · June 2010

On the advice of my Dr I am not getting an NT scan, he said unless we plan on terminating if we get bad news, he feels that it is not worth it. Which me and H had already decided.

Tracy6450 · June 2010

I am not getting the test either. Even if we received poor results we had decided that we would not terminate the pregnancy, especially since the tests aren't accurate enough (friends of ours know a couple who had very poor results and their baby was perfectly healthy at birth). So we have opted not to find out instead of possiblity of stress and worry if we did have poor results.

Tracy6450 · June 2010

Tracy6450:
I am not getting the test either. Even if we received poor results we had decided that we would not terminate the pregnancy, especially since the tests aren't accurate enough (friends of ours know a couple who had very poor results and their baby was perfectly healthy at birth). So we have opted not to find out instead of possiblity of stress and worry if we did have poor results.

Sorry I jumbled my words around above

wmramsel · June 2010

We aren't doing any of the genetic testing. Under no circumstances would we terminate the pregnancy and I've known quite a few women who had false positives. We wouldn't do the amnio if there was a question because of the risks of the amnio itself. Some women do it to be prepared if there is something wrong with their baby, but until the accuracy is better, I don't think we will be doing any of it.

AmericaMowry · June 2010

We haven't discussed it with our Doctor yet, but based on my limited knowledge on the subject I think I'd pass on it.

I can see it being a tough decision and I don't think either one is right or wrong. As long as everything is looking good as far as our Doctor can see, I don't think it would do me any good to worry more than I already do.

izzourclue · June 2010

We opted out. We also opted out of the CF screening.

tigerali · June 2010

We will not be doing the testing.

pawcall · June 2010

mjartlip:
Hey ladies,

I'm not doing the NT screening or any other testing. Are any others opting out as well?

Just an aside - this isn't specifically what you're asking, but i think it bears saying - the NT scan is not a diagnostic procedure. It's a screening test that should help identify the risk or likelihood that something may be wrong. People use those results to decide whether or not to have the (more intrusive) diagnostic tests.

DaniGirl0517 · June 2010

We wouldn't terminate for any reason. There was no reason for us to do these kinds of testing. The only thing we did was some of the genetic testing specific to race that was part of the routine blood draw for HCG level and whatever else was in there. I didn't find out until after what they were testing for. I think the only big one though was for cystic fibrosis but I haven't received the results back yet, I will at my next visit.

SBear12 · June 2010

We had it all done with Lyla (results were very normal), but I think we'll opt out this time.

I'm not against termination in the event of a very extreme illness when a baby might be experiencing unnecessary pain and suffering in utero, and won't survive after the birth. But the odds of that happening are SO small, that I feel comfortable skipping the test. I'm also wary of doing more ultrasounds than necessary, and the NT scan with Lyla was over 30 mins long... that's a lot of exposure for a 12 week old fetus.

Just personal preferences though, and I don't judge people at all for choosing to have them.

JDoe11111 · June 2010

not doing it

My reasoning: CF & Downs have come a long way, I don't think I could terminate for either of these situations, and knowing in advance does not change the delivery or prenatal care significantly. I also would not be comfortable doing the 2nd step amnio if we did get questionable results, and my doctor is strongly in the camp that if you don't want to do the amnio, no point in doing the first step. I'm a huge planner and worrier, but I don't think testing would make me feel any less stressed in this situation, and I'm trying really hard to keep a calm environment for my baby.

Trisomy & other severe NT issues can be detected with 80-90% accuracy on the regular ultrasound we are getting at 18-22 weeks. These would be the only real conditions that could lead to termination in our eyes (I personally would have severe difficulty carrying a baby to term that I knew was not viable), and finding out at 20 weeks wouldn't be any less painful than at 12, it would be heartbreaking either way.

KeyRyn320 · June 2010

I'm not, especially when my doc told me the results are only 80% accurate and false positives were common. He also said insurance may not cover it.I say check with your insurance and, if they cover it, then it won't hurt to get it done. I personally am not going to since we wouldn't terminate the pregnancy one way or the other.

mchupie · June 2010

We are doing the NT scan tomorrow. The only reason we would terminate would be if our baby has anencephaly (no brain) which can be diagnosed as accurately at 12 weeks as it can at 20 weeks, so says my OB. For me personally, if God forbid this was the case, I would rather be able to terminate now than at 20 weeks. We chose to do the NT to rule this out (hopefully).

KLResq · June 2010

I find it interesting that nearly everyone who has posted about declining the test cites the fact that they wouldn't terminate as their justification.

I do not see how choosing to have a screening test equates with terminating in the event of questionable results. My DH and I would not terminate, but I would like to know whether further testing (including invasive testing) is warranted. Knowlege is power, which is why my DH and I chose to have the NT (& modified sequential) done, NOT because we intend to terminate.

MsixelA · June 2010

We're not doing any testing. The tests show you the probability that something may be wrong. We know we're terminating no matter what, so if there's nothing they can do to correct whatever they find, there's no reason for us to know beforehand.

*kendrick* · June 2010

I think this question gets asked once a week, if not more, so--if you want--you can scroll back and read even more previous opinions. We did the NT scan last week with no regrets. Tests don't have to have anything to do with termination, unless you choose for them to. We like to be armed with information and there is no harm to mother or baby in doing the NT scan. Had we recieved a higher risk result, I don't think that we would do invasive tests because of the risks. But, with a higher risk result we certainly could look into the resources around us, plan for baby's birth and care differently, etc. Plus, we loved the long u/s appt time and watching LO play, nap, and play again.

I am a "more information is always better" person. This is also why we did CF screening before TTC. A carrier result would've helped us plan our family-building in a different way. For the people who are more "more information makes me worry" I can understand why they would opt out.

nygirl07 · June 2010

We opted out b/c whatever the test show it can't cure anything and it would just worry us and I've heard a lot of false positives or girls who have gotten results that gave them a chance of having a baby with problems and they worried the whole pregnancy and that wasn't worth it to me

tfarabians · June 2010

KLResq:

I find it interesting that nearly everyone who has posted about declining the test cites the fact that they wouldn't terminate as their justification.

I do not see how choosing to have a screening test equates with terminating in the event of questionable results. My DH and I would not terminate, but I would like to know whether further testing (including invasive testing) is warranted. Knowlege is power, which is why my DH and I chose to have the NT (& modified sequential) done, NOT because we intend to terminate.

This! One of my very good friends caught a heart condition on her NT scan at 12 weeks with her baby. Because of that they were able to get on top of it right away and start watching her every 2 weeks to check progress. They were so glad that they were better prepared instead of just finding out at the 20 week appt.

KIRKLAND13 · June 2010

We had our appt. today and hubby was against all testing. So we aren't doing it. I think it would just worry me to much and like everyone else we are still keeping it no matter what. Everything else went really well. The baby was so much bigger in today's ultrasound than at 8 weeks Big Smile

bridalinsane05 · June 2010

we opted out. although, after my last miscarriage we found out the baby had trisomy 9, so we went for genetic counseling and found out our risk factors are low for having a genetic issue with a live a birth. I didn't have the tersting with dd.

MJM3108 · June 2010

*kendrick*:

I think this question gets asked once a week, if not more, so--if you want--you can scroll back and read even more previous opinions. We did the NT scan last week with no regrets. Tests don't have to have anything to do with termination, unless you choose for them to. We like to be armed with information and there is no harm to mother or baby in doing the NT scan. Had we recieved a higher risk result, I don't think that we would do invasive tests because of the risks. But, with a higher risk result we certainly could look into the resources around us, plan for baby's birth and care differently, etc. Plus, we loved the long u/s appt time and watching LO play, nap, and play again.

I am a "more information is always better" person. This is also why we did CF screening before TTC. A carrier result would've helped us plan our family-building in a different way. For the people who are more "more information makes me worry" I can understand why they would opt out.

I agree completely! I had my NT scan on 6/21, and am happy I did it. I also will opt out of the more invasive testing. All seems well with LO, so now it is in God's hands!

a-beautiful-mess · June 2010

KLResq:
I find it interesting that nearly everyone who has posted about declining the test cites the fact that they wouldn't terminate as their justification.

I do not see how choosing to have a screening test equates with terminating in the event of questionable results. My DH and I would not terminate, but I would like to know whether further testing (including invasive testing) is warranted. Knowlege is power, which is why my DH and I chose to have the NT (& modified sequential) done, NOT because we intend to terminate.

Yes I was wondering this, too.

That said, we're not having any testing done.

kpv · June 2010

I just posted about CVS - I had this done today. This is a diagnostic test and will tell us for sure if anything is wrong with the baby's chromosomes. We decided to do this because we wanted to know and we decided that we would terminate if something was seriously wrong.

I am not really a fan of the NT scan because it doesn't tell you anything for sure - it just gives you odds.

Hey Jellisy · June 2010

We turned it down. Regardless of the outcome we would not terminate the pregnancy. At the 20 week ultrasound they can see if they think the baby has Downs so we are prepared but what God gives us, He gives.

pawcall · June 2010

I tried not to post on this, under the "if you don't have anything nice to say..." reasoning. I shouldn't have read all the responses. They just make me angry.

The OP didn't ask if you would terminate. That's the question almost everyone seems to be answering, as though "are you having any testing done?" is identical to "will you terminate?"

Two VERY different questions. All of the "we wouldn't terminate" responses just play into the ridiculous misconception that if you want information, it must be for the purpose of termination.

Ridiculous.

ETA: Turning down the testing is a totally valid choice. I just wish that people didn't make these grand assumptions about why others would decide to go ahead with the testing.

tcfy99 · June 2010

We are opting out of the screening. We had thought about it and the results would not change anything.

alliecarrie41 · June 2010

you really can't worry about what others think or us... do what you need to do. for me, that was 100% yes for the NT scan. it's just pretty common in my circle and not a big deal nor any indicator that i'd terminate pregnancy.

AlphaKat · June 2010

We aren't doing any testing either. I want to have a relaxed pregnancy and would worry constantly about a false positive or if I knew anything was remotely wrong with my muchkin. We also have plans to keep the baby no matter what could go wrong. My doctor didn't seem thrilled with our decision but she didn't really say anything at all so I just left it at that.

whits900 · June 2010

This.We did not turn it down, and we ended up also choosing to do more invasive testing (CVS) we already know we would not terminate. But just to put this in perspective for you- these tests also test for things besides Downs - things that could mean the baby would not live to see one year. Other things that mean you need medical attention as soon as the baby is born. I personally want to be as prepared as possible. Yes- it's in Gods hands...but being prepared is in mine.

reginapaige1 · June 2010

To those asking why people are mentioning termination - it is precisely because many OBs mention terminating if an "unfavorable" result is given. These tests are pushed in many cases now because many people feel that babies with Down's Syndrome or other conditions should be terminated.

I think it's great that people are affirming that they will give birth to their babies - no matter what! I'm in that club.

jjohnson6 · June 2010

cdobry01:

I tried not to post on this, under the "if you don't have anything nice to say..." reasoning. I shouldn't have read all the responses. They just make me angry.

The OP didn't ask if you would terminate. That's the question almost everyone seems to be answering, as though "are you having any testing done?" is identical to "will you terminate?"

Two VERY different questions. All of the "we wouldn't terminate" responses just play into the ridiculous misconception that if you want information, it must be for the purpose of termination.

Ridiculous.

ETA: Turning down the testing is a totally valid choice. I just wish that people didn't make these grand assumptions about why others would decide to go ahead with the testing.

Agree with all of this!

locash · June 2010

We opted not to have the NT scan done. I am uncomfortable with the false positives that I've heard can be common and I wouldn't go for the more invasive testing if something came back questionable. We don't have a lot of risk factors and everything appears to be okay as of now.

Totally personal decision, though, and I did consider it. Just decided ignorance is bliss in our case. We'll deal with life as it comes, I guess...

whits900 · June 2010

Sorry - my "this" was for cdobrys response...

LizzyB11 · June 2010

We are doing the NT scan tomorrow and a second part of it in a few weeks (more blood work.). If the results lead us to believe we might have a baby with some sort of chromosomal problems, Downs, etc. then we will have an amnio. We are both "need to know" people, and I want to know what we could be facing. It will make me rest better if we get good results after completing both parts of the test.

MrsYam · June 2010

Didn't do the NT test with DD, not going to with this one either. Although, we did get the Quad screen last time because my hubby has a very mild form of spina bifida. But, probably skip that one this time as well.

The only reason I'd do it is to get the u/s to see the little one. :P

deenie816 · June 2010

It's interesting that a lot of those that said they are opting out because they are against terminating. My religious beliefs and personal feelings are that I would not terminate for any reason but I'm still doing the evasive testing (blood draw and u/s). I want to be educated and informed so we can be prepared. I also know the risk that false positives do occur.

However, I will not do an amnio or anything other than little to no risk procedures.

Oh, and I will admit I love every chance I can get an u/s and see LO. :-)

Slosey · June 2010

I'm doing it. My appt is in mid July. Although I respect everyone's decisions, my DH and I would rather know.

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