Opting out of genetic screening...

bdbrandt2 · November 2014

@HilarityEnsued‌ I just brought that up not to start any type of war-I thought that she was saying that it's terrible to have my baby's blood drawn because it would be painful..well there are a lot of things that are probably painful that happen upon birth, like circumcision, Hep C shots etc.. Not a war, not deflecting, I guess I just wasn't clear.

I'm not opposed to getting my husband and I tested for CF. Genetic testing just didn't seem like a big deal the way that the MW explained it or lack there of

VeganOnTuesdays · November 2014

The fact that this turned into a who loves their kid more, and what mom is smarter than the other is absolutely fucking ridiculous. And those who are saying "I don't judge if money for the tests is the issue." WTAF? I am not having any of the additional tests done besides the standard Anatomy test and it has nothing to do with the money I have in the bank, the amount of love I have for my kid, or the potential "stress" it may cause me. I am not ignorant and have faith that my doctor knows what the fuck she is talking about when she says that not only would the other noninvasive tests ONLY add about an additional 8% accuracy to the anatomy test but that for my situation they are not entirely necessary.

VeganOnTuesdays · November 2014

HilarityEnsued said:

VeganOnTuesdays said:

The fact that this turned into a who loves their kid more, and what mom is smarter than the other is absolutely fucking ridiculous. And those who are saying "I don't judge if money for the tests is the issue." WTAF? I am not having any of the additional tests done besides the standard Anatomy test and it has nothing to do with the money I have in the bank, the amount of love I have for my kid, or the potential "stress" it may cause me. I am not ignorant and have faith that my doctor knows what the fuck she is talking about when she says that not only would the other noninvasive tests ONLY add about an additional 8% accuracy to the anatomy test but that for my situation they are not entirely necessary.

Having blind faith in a doctor isn't a great idea. Doctors are just humans and aren't infallible.

I completely understand what you are saying to a point. But it isn't "blind" faith. I have done my own research on the subject matter and believe that the anatomy scan will be sufficient. Doctors are only human but the fact is that this woman does this for a living. Every day all day. I would like to think that the person who will be extracting a human from my body would have a LITTLE of my faith.

skupski83 · November 2014

HilarityEnsued said:
I am actually shocked at the number of people opting out of these tests. Maybe because I live in a bigger city and all my friends live in big cities, but I do not know a single person that hasn't had these tests.

With specific regard to the anatomy scan I do not know a single person that didn't have it. Maybe I associate with more educated people.

That's incredibly rude to imply that people who get the genetic testing are more intelligent. Knock it off.

skupski83 · November 2014

HilarityEnsued said:

Starbuck128 said:

I'm surprised how quickly these new blood test have become the marker of whether or not you are a good mom. Three years ago many doctors didn't even know about the Materniti, whatever it's called test, and the other one like it. But now, in three short years, if you don't get it you are ignorant. Yeash! Mom wars are tough!

Meh, I think the genetics tests are not a marker in mom wars. I have said before, if it's not covered by your insurance, I won't flame anyone for not wanting to spend all their monies on these tests. However, things like the anatomy scan... that's a different story to me. And honestly, mommy wars or not, reading the responses in this thread speak to a pattern of overall willful ignornace that I find alarming.

I wonder.. how many people that opt out of these tests are also not going to vaccinate?

Everyone has different reasons for the choices they make. However, polio has been nonexistent for a reason. Vaccinations make sense. Though, again, free will and all that. Most people who don't vaccinate are worried about the preservatives in the actual shot, but u think u can get them without the preservatives. But I could e talking out of my ass too. It's been known to happen a time or two.

Unknown · November 2014

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trislee · November 2014

I have a related question. My insurance will not cover the non-invasive tests because I am not AMA. However, my doctor indicated that if they are any markers on my anatomy scan or quad screen that she could get them covered for further screening. I assumed that means that the blood testing can be done at any time during pregnancy, is that a correct assumption?

Eta that I am referring to the new genetic tests.

Unknown · November 2014

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jraeohyeaaa · November 2014

@GFJ48
They may have just not known the official name of the test/scan that they got. At my 15w appointment all my doctor said was "we will set up your ultrasound for the next appointment...it will take longer and we will look at the baby for awhile." I only knew that was the "Anatomy Scan" because of how far along I would be (19w) and what I had read on this board.

lupineaura · November 2014

Starbuck128 said:

I don't think this is a "mommy wars" issue anymore than vaccinations are. Taking advantage of modern medicine seems like a no brainer. It's not a question of parenting styles/philosophies.
Yes, but it's just surprising that it happened so quickly. If I wasn't on TB, I wouldn't even know about these two tests, wouldn't have asked about them at an appointment, and would have no idea how stupid I am for not paying nearly 1k for one of them. I would have just gone into this pregnancy blind, not realizing the mommy wars landscape had changed so drastically since my last pregnancy. ETA-I would say the cost of these tests make it a lot different than the issue of vaccines. Vaccines are covered by insurance, given at a no cost well baby exam. Without insurance, parents can still find many low costs programs. These blood tests are a way to judge moms on their disposable income. It may not be to you, but $1,000 is a shit ton of money to some people. Judging someone as a good mom based on whether or not they have it is shitty.

I actually think prohibitive cost IS one of the good reasons to opt out of the non-invasive blood tests. I wish they were covered for everyone.

I have a harder time with people opting out of the anatomy scan.

skupski83 · November 2014

I guess the fact that I said that makes me less intelligent as well. WHATEVER!!! (Obviously I'm kidding and this is meant as a joke)

skupski83 · November 2014

I'm actually not sure about the anatomy scan. I don't think I've been talked to about that. Can anyone fill me in?

StacBL · November 2014

I think what some people seem to be forgetting is that these tests are not %100 accurate. The only tests that are %100 are the invasive tests. So if you are someone who doesn't plan to do an amnio or CVS to confirm a likelihood of a chromosome abnormality then there is really no point in the added stress. I have several friends/acquaintances who were told there child was likely to have downs/ trisomy 18 and they were perfectly fine.

This time around I did the NT scan and wish I hadn't. My results put me at a high risk for chromosome abnormalities/heart defects. But there is no knowing for sure until baby gets here since I won't have the amnio.....I am only 13 1/2 weeks....

Can I just say WOW, the nasty comments on these boards are the exact reason I stopped getting on here after getting pregnant with my 3rd. Now that I'm pregnant with my 4th I thought I would try again....on second thought....

jraeohyeaaa · November 2014

ramy3 said:

@trislee‌ you have Tricare right? They cover the first trimester screen and NT scan for anyone. Just not the Harmony type tests unless you're AMA. I wasn't sure if you were talking about both things and wanted to make sure you knew they do cover the NT stuff.

I have Tricare and they did cover the first trimester screen. I'm not sure if I had the NT scan or not--my doctor doesn't really give the names for things, just says "oh we are going to draw blood to test for x y and z" but I know they cover the first trimester screen because I did get that.

trislee · November 2014

ramy3 said:

@trislee‌ you have Tricare right? They cover the first trimester screen and NT scan for anyone. Just not the Harmony type tests unless you're AMA. I wasn't sure if you were talking about both things and wanted to make sure you knew they do cover the NT stuff.

@ramy3 Yes, I do have Tricare. I feel like we covered so much at my first (and so far only) appointment and all of the testing was lumped together. Perhaps she presented it correctly and I misunderstood her. I know we did the blood sample for carrier testing for CF, so maybe there was another vial taken for the first trimester screen as well. I gave a lot of blood that day

. I didn't ever go get an actual NT scan done though. Ugh. I know that it's too late for that now, but now I know for future reference, thank you!

gmartinez14 · November 2014

I'm getting the S'S scan, but I'm (relatively) young, low risk, and insurance doesn't cover the first tri screens, so I opted out. I'm also highly educated and generally a worry wart and preparer, but I couldn't bare to drive myself crazy with the tests. (Already paranoid over everything after a past loss).
And stressing constantly is no good for baby either. I say unless you are in certain risk groups to begin with, don't torture yourself.

AErinY · November 2014

skupski83 said:

HilarityEnsued said:
I am actually shocked at the number of people opting out of these tests. Maybe because I live in a bigger city and all my friends live in big cities, but I do not know a single person that hasn't had these tests.

With specific regard to the anatomy scan I do not know a single person that didn't have it. Maybe I associate with more educated people.
That's incredibly rude to imply that people who get the genetic testing are more intelligent. Knock it off.

Completely agree ^ . My level of education has nothing to do with whether or not I choose to have these tests done. The fact that some insurances don't cover excess testing is irrelevant in regards to a persons education.

The fact that you live in a bigger city may also have something to do with why all of you, and the educated people that you associate with, have had these tests. You have access to them.

Aside from the fact that you basically just shit on every person who hasn't opted to have genetic testing, my husband and I will be participating in the anatomy scan, as we want to make sure that our baby is healthy and properly developing.

jwm29 · November 2014

We opted out...it wouldn't change anything and it would just add stress and anxiety, so not for me!

JustMoiAgain · November 2014

I am very perplexed by the wait and see camp. Imagine having the moment you have dreamed of your entire life turned upside down by a child who needs to be whisked away for additional care. Imagine waiting for hours to not know what is "really" happening and having sporadic updates, but nothing conclusive.......Sure you will deal with the stress and love your baby no matter what, but those seconds, minutes, hours of not knowing how your child is and the fear that they may not survive will be very real......I can't imagine purposely putting myself or my SO through that if there was a option to be prepared.

Telus · November 2014

We opted out for the simple reason that if any test came back positive or inconclusive we knew I would worry to a point that knowing would do more harm than good.

chefnewmommy · November 2014

Yes ... Tests like maternat21 collect cells from the baby's blood that's circulating in your blood and study each chromosome for abnormalities

chefnewmommy · November 2014

I've read through mostly all of the comments under this thread and thought id share something. I had a son a few years back who-- through the anatomy scan, showed signs of Trisomy18. I was encouraged to receive an amino which confirmed the chromosome abnormality. My fiancé and I were both healthy, no family history, etc, etc. I was encouraged to terminate the pregnancy bc of all his problems, but refused. He was stillborn at 32w. With this pregnancy, esp bc of my history, I was offered genetic screening and I took it. Contrary to many who have never had this screening, it provided me with peace of mind and relief knowing with 99% accuracy that my little girl isn't at risk for any chromosome defects. Had there been a problem , id use that information to learn how to better care for a child with special needs, as I had the first time around. The same way anatomy scans screen for baby's health, so do these tests. You can't see if anything is wrong with your baby on a molecular level through scan, but they are necessary as well! Screening helps you prepare and give information just in case! To me, a lot of ppl here are uninformed about what these tests actually are, and are receiving the bulk of info from forums and general opinion instead of an educated practitioner. Having prior healthy pregnancies, has nothing to do with it. The chances of me having a child with trisomy 18 were 1 in almost 600,000, But it happened. We want information about all the good things, but are willing to ignore other things bc of our own peace of mind which comes off as a little selfish. Pregnancy in itself is stressful on your body--- both physically and mentally. This is just information---like anything else. I respect those who choose not to do genetic testing, but to say it makes no difference--- especially having never been in a situation where you are pregnant with a special needs child--- is a very insensitive and ignorant statement. Getting this screening isn't playing God or doesn't mean you'd terminate... It helps you receive the counseling and care you and baby will need. Make decisisipns based on what could be best for your baby, not bc you are scared of what you could find out. Motherhood is about caring for another life ABOVE your own.

chefnewmommy · November 2014

Starbuck128 said:
I'm surprised how quickly these new blood test have become the marker of whether or not you are a good mom. Three years ago many doctors didn't even know about the Materniti, whatever it's called test, and the other one like it. But now, in three short years, if you don't get it you are ignorant. Yeash! Mom wars are tough!

The implication that was made was actually that these tests don't make a difference. Ppl don't still use outhouses! You no longer have to bring in firewood to heat your stove, and there was no way before to know caused of death if you lost your child during pregnancy or delivery. As the world advances, so does medicine. No one called anyone a bad mom for not recovering screening, but they are making ignorant statements about reasons for not receiving it. I.e--for a woman to imply that bc she has healthy babies already and isn't high risk, so she doesn't want/need complete certainty that this baby is ok is a statement based on opinion and not knowledge. None of those things matter. To blame it on "added stress" is bull as well.

takehart · November 2014

Is anyone else completely beside themselves because the genetic test isn't covered and it costs an obscene amount of money? I'm so frustrated. What is the point of having health insurance?

Pintobean39 · November 2014

takehart said:
Is anyone else completely beside themselves because the genetic test isn't covered and it costs an obscene amount of money? I'm so frustrated. What is the point of having health insurance?

I'm betting it will become more of a readily available and affordable test for everyone in the future since it's still kinda a new test. My insurance covers it along with the CF test 100% as part of the initial pregnancy screening regardless of age.

pnwgirly · November 2014

We did it so we could prepare for any special needs our baby could have. The testing came out that baby is very healthy, but we just wanted to make sure we had plenty of time to get ready for our little one in case we needed more information

rosannewild · December 2014

We are having the tests. We have gone through so much for our baby girl just to get pregnant, it simply gives peace of mind as each test has come back perfectly normal. We are secure in opting out of the amnio as the other tests show such low risk. Advanced maternal age has given me an advantage of more monitoring (and more baby photos) to tell me she's healthy and thriving in there.

ksitzes81 · December 2014

I opted out but the told me the NT scan was on the upper limit of normal and sent me for other tests ( we were pissed because we didn't want to know even if there was something) after all the stress tears and bs of going to other specialists there are no problems... To many false positives to believe it anyway.. I'm not happy about the way my health care for this preg is going

sb184 · December 2014

We've opted out as well.
1. I had an at length conversation with my OB about the tests and she said I'm low risk and unless the results would change anything she wouldn't recommend getting the testing done.
2. For everyone who wants to act like for those of us who opted out that we are not preparing ourselves for all the needs of baby- go to hell.
3. I'm an NP. I'm delivering at one of the best hospitals in the nation with a NICU, and all staff on call- if baby has special needs at birth I will have all the staff there that I could need
4. My mother was a Special Ed teacher for years, and even if I didn't have the medical background that I do, I would still have knowledge and support needed for dealing with even the most profoundly special needs child.
5. The results of the test wouldn't change my pregnancy plan in any aspect and therefore the test is of no use to me
6. For those of you that chose to have testing done I applaud you as I am sure you chose to have them done based on your own person needs and that is the only thing that is important. Everyone has their own needs and just because they may be different than your own, it does not make the person wrong. If they do what is right for them, then they made the right decision.

Pintobean39 · December 2014

sb184 said:
We've opted out as well.
1. I had an at length conversation with my OB about the tests and she said I'm low risk and unless the results would change anything she wouldn't recommend getting the testing done.
2. For everyone who wants to act like for those of us who opted out that we are not preparing ourselves for all the needs of baby- go to hell.
3. I'm an NP. I'm delivering at one of the best hospitals in the nation with a NICU, and all staff on call- if baby has special needs at birth I will have all the staff there that I could need
4. My mother was a Special Ed teacher for years, and even if I didn't have the medical background that I do, I would still have knowledge and support needed for dealing with even the most profoundly special needs child.
5. The results of the test wouldn't change my pregnancy plan in any aspect and therefore the test is of no use to me
6. For those of you that chose to have testing done I applaud you as I am sure you chose to have them done based on your own person needs and that is the only thing that is important. Everyone has their own needs and just because they may be different than your own, it does not make the person wrong. If they do what is right for them, then they made the right decision.

Go to hell???? Was that really necessary?

sb184 · December 2014

@Pintobean39‌ @SaltyH2O‌
If you read what I wrote, I didn't tell those who disagree with my viewpoint to "go to hell". I'm referring to those who continue to tell me I'm not "doing what's best" for my child to do so... I don't judge other people's choices on what they feel is best or right for themselves or children, so for the people who can't give me the same respect, then yes..

Unknown · December 2014

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Leslie2003 · December 2014

Out of curiosity, those who rejected first trimester screening (whatever they may be) and have their 20 week anatomy scan (or Level 2 depending on your risk level), if issues are seen, will you then proceed with genetic testing, or will you continue to live blissfully thinking that baby is a-ok?

Lauracox3 · December 2014

@Leslie2003‌ I will throw out my scenario. I did not do the first trimester screening because my insurance did not cover it. I had the quad screen done in my second trimester which was covered. I had abnormal results that showed high risk for Trisomy 18, so we decided to do the Maternity 21 test. The results came back normal. If the baby this chromosomal abnormality, DH and I would have had some hard decisions to make because the baby would most likely not have survived past birth. I thought about my choice to have the blood work extensively after the results came back. However, I still would have wanted to be prepared for whatever challenges would have presented themselves, either now or when the baby was born. I can't imagine having all those choices and decisions to make when the baby is born. The situation could possibly be stressful enough as it is finding out unexpectedly your baby has major disabilities. The more information I can have to prepare myself to help our baby the better, in my opinion.

sb184 · December 2014

@Leslie2003‌ 60% of abnormalities show up on an ultrasound. If my anatomy scan or any other future scan were to show an abnormality the only reason I would have genetic testing done would be to clarify it was indeed a genetic problem. You cannot fix a genetic problem, as at this point in time there is no way to fix baby's DNA. Which is why I opted out of genetic testing from the start. This is because if I gave a positive result A. My chances of having a baby with downs would still only be 1:252 and B. There is no cure for genetic abnormalities. I would want to clarify it was genetic if an abnormality presented, because some non-genetic abnormalities can be fixed during utero.
Also I am prepared if baby were to be born with a genetic abnormality. Again, I am an NP, and I am delivering in a hospital were all staff is on standby if needed (ie cardiology).

@SaltyH2O‌ apparently you are unclear. "Act" is a verb meaning a person would have taken some action. Having a different option is not "taking action". I am referring to those who have taken action by saying or writing, that those of us who are not having genetic testing done are not doing want is best for our children. I have never judged anyone on here by saying they are not doing what is best for their children, but yet, many have written they believe we are not doing what is best by opting out. I'm very much open to different options, and each persons circumstances are different and individual to their own. So testing may be right for one couple and wrong for the next, but it doesn't mean either person is not doing what is best for their child. All I am saying is those of you who have openly judged me by saying I am not doing what is best for my child to go to hell. I am highly educated on the matter and have my own circumstances and reasoning for not testing and I have never put down those who have opted to test.

bashfulbird · January 2015

oops my bad

Unknown · January 2015

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bashfulbird · January 2015

Like I said I'm new here. Thanks for the welcome. I am looking for helpful info. so unless you are going to point me in the right direction...why bother responding? looks like I just found the ppl looking for entertainment.

sml72978 · January 2015

Are you due in May because typically you would have been offered the genetic screening around 12 weeks so you would have already had it...or declined it...if you are due in May.

chavez2685 · January 2015

This is my 3rd, we've refused all screenings for each. I can see the benefits of knowing ahead of time to find special doctors and be well informed but I think it'd be so hard to not stress and it wouldn't change how we loved the child so we just decided we'll deal with what comes.

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