Opting out of genetic screening...

skate404

I had my NT appointment and everything looked perfect. The dr then starts explaining this process of having blood drawn twice and then combining the data with the ultrasound results...blah blah blah! At which point I will be almost 20 weeks before I would get any conclusive results. To me it seems kinda crazy. I have 2 healthy children, and while i'm aware that anything is possible, I am just not sure that all the stress of these tests is worth it. 

Has anyone else opted out of these tests?? For what reasons??

futurecoler88

I am....my husband and I just dont want or need the extra stress. We will love the baby regardless.

Hawk&Eye

I had a sit down with my midwife and then another with the amazing nurse manager. We talked about all the tests and after discussing it more with DH we didn't schedule anything. For the first week, I felt good about it but now I'm rethinking it somewhat. I don't have another appointment until early Dec. Given the space between these appointments and the anatomy scan, I think it's just causing me to play the "what if" game.

Snapdragon750

I opted out.

OnceInLoveWithAmy

IFinTN said:

FYI-people don't usually do genetic testing to determine if they will "love their baby" and I don't appreciate the insinuation that those who find out something is wrong automatically terminate or love their baby any less..

This. I will love my baby no matter what, but I am doing all genetic testing to prepare myself.

Do whatever tests you want, but don't think people who do decide to do it won't love their baby any less than you.

skate404

Nobody here was hinting at using these types of tests to determine if they will love their baby. I was just curious as to what others experiences are. I just feel like everyone seems to be doing these types of tests and I felt for me and my family that it was not something that we necessarily want to do as it would not make a difference anyhow

VeganOnTuesdays

We have opted out as well. We are young and low risk so my doctor didn't see the need. I am comfortable with my decision.

samiamagirl

Our NT scan came out perfectly, absolutely nothing showed up that raised any red flags. Even so, I'm still going to do the advised Second Trimester Blood Tests. According to the geneticist that talks to every couple after the NT scan she says that most of the time the blood tests just confirm the original findings, but also adds in testing for other things that don't start showing up until later on in the pregnancy.

I'm not worried, I'm not experiencing "what ifs." I'm just getting these test because they're non-invasive to my baby (I've gotten enough blood taken that it's hold hat to me) and if something changes from what we've already been told, then my husband and I can start making proper steps to get the care and/or treatments this child may need early on in life to give it the best start.

nlp1990

We opted out last time and did again this time.

[Deleted User]

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mpiemont

futurecoler88 said:

I am....my husband and I just dont want or need the extra stress. We will love the baby regardless.

I had the NT scan and sequential screen with my first 2 babies and this time as well. Guess what? I loved/will love my children regardless as well. It's not a test to determine if I'll like the kid or not. This angers me.

FreddyisReady

I don't see what is stressful about getting blood drawn to be analyzed.

And yes, the results can change things. You have time to research identified abnormalities, check what treatment your insurance covers, secure a treatment plan or any specialists, or make changes to your home to accommodate any special needs.

Some abnormalities are not inherited. They are chance mutations that happen at a genetic or developmental level. Having healthy previous children does not insure you in the future.

abethany

After two miscarriages, the scan and seeing that happy little baby and little heart beat was so comforting. That said, with my insurance it was only $25 for the u/s and the blood work and if I had to pay OOP, I wouldn't have paid for it.

sml72978

OnceInLoveWithAmy said:

IFinTN said:

FYI-people don't usually do genetic testing to determine if they will "love their baby" and I don't appreciate the insinuation that those who find out something is wrong automatically terminate or love their baby any less..

This. I will love my baby no matter what, but I am doing all genetic testing to prepare myself.

Do whatever tests you want, but don't think people who do decide to do it won't love their baby any less than you.

Thank you both! This is what I have been saying all along. I hate when people say that!

I didn't find out bc I will love my baby no matter what! Well that pretty much implies that those who do find out will not love their baby if something is wrong!
I found out because I love my baby so much that I want to be fully prepared for any problems that may arise that could be determined from these tests.

So the reasoning of because I will love my baby no matter what is ridiculous. Just say because you don't want to, because you would rather not know, because you are afraid to find out something is wrong.

I am sure we all would love our baby no matter what and would love that baby so much that they make the best choice for themselves and that baby regardless of what anyone else's opinions are.

blitzy23

To each their own. It's a personal choice.

melodysmommy09

Cut the nurse off short when she asked if I wanted genetic tests for things that could be wrong with the baby that couldn't be changed. There is no point in finding out something is wrong with your child only to know there is nothing you can do about it. Abortion has always been out of the question with me. I love this baby no matter what.

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manacita

I opted out and I turned 35 on Halloween. We have no genetic issues in our families and there are few issues that could be raised that I cannot also deal with after the 20 week ultrasound.

I respect all decisions in this matter and motivations to test. If you test to prepare, great. If you test to potentially terminate due to a terminal condition, I respect that. I believe that we all love our babies. Testing or not testing is not a measure of our love. Being kind to other pregnant moms (while still standing up for yourself) is a measure of class and grace.

I also appreciate that you shared this. When I tell people that I opted out, most of them are supportive. However, I don't find a lot of people who do opt out if it is even partially covered by insurance. So I was feeling a little lonely and occasionally second guessing my decision. Thank you.

kaynix21

futurecoler88 said:

I am....my husband and I just dont want or need the extra stress. We will love the baby regardless.

This is what we said and how we feel.

However my husband is leaving (military) soon and wanted to see the baby an extra time or two so we're going through with the NT stuff, one more us and blood draw and hopefully all done.

itsmevkb

I'm curious out of those who are "opting out of genetic screenings" how many are also choosing not to have the anatomy scan done?  You all realize the purpose of that scan is the same as the purpose of a NT scan and the bloodwork tests, right?

If the argument is I don't need the stress and I will love my baby no matter what why then will all of you, I'm guessing, opt in to the anatomy scan?

lupineaura

melodysmommy09 said:

Cut the nurse off short when she asked if I wanted genetic tests for things that could be wrong with the baby that couldn't be changed. There is no point in finding out something is wrong with your child only to know there is nothing you can do about it. Abortion has always been out of the question with me. I love this baby no matter what.

It is totally up to you if you don't want genetic testing, and I don't judge people for turning it down. However, don't make a decision based off the assumption that there is "no point" and "nothing you can do about it." Abortion is NOT the only option if you discover your baby will have special needs. As others have pointed out, you can prepare for the care of your child. For example, a child with special needs may require a certain level NICU or benefit from a team of specialists present at birth. Hell, there are even some treatments which can be done in utero! Go science! From an emotional end, you could connect with a support group prior to birth. There are myriad other examples.

As I said, there are perfectly valid reasons why you may opt out of screening. But it bothers me when people say there is nothing you can do (except terminate), because it simply isn't true.

dj99

sastahlman said:

I didn't do the genetics testing with either of my pregnancies. I will do the anatomy scan to make sure everything is developing properly, but I personally felt like the testing would just stress me out (especially if it came back that there's a this in this chance of the baby having xyz, and not something 100% concrete).

Actually the blood tests are thought to detect greater than 99% for down syndrome, 98% for trisomy 18 and 65% for trisomy 13.

So if the DR saw something at your anatomy scan that wouldn't stress you out? Why not just skip that too?

Angelina08m

I also opted out. I will cross the bridge of and when it comes. It's all in God's hands in my opinion I will love it regardless

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Snapdragon750

HilarityEnsued said:

It's not commendable or somehow superior to opt out of screenings to determine if your baby is healthy or if your baby will need additional care.  I cannot believe how many people post this shit about how you aren't getting any tests because you think this somehow proves your love to your child?  It's so ignorant and backwoods and it makes me crazy.  Read a fucking book.  Educate yourself.  You are naive.

<-------------- obviously gets very fired up about this subject.

@Hilarityensued, just for clarity, you're talking about refusing an anatomy scan, not refusing genetic testing, right?  (because refusing an anatomy scan would be crazy.) You always seemed like a rational person and I can't imagine you'd paint the two with the same brush.  Anatomy scans can catch issues that need surgery in utero or immediately post-partum, among other things, and it's stupid not to get one.  Genetic testing that can only tell you the baby's possible risk of having a possible genetic abnormality is totally different.  Not only are false positives pretty common, but not everyone feels the need to be mentally prepared ahead of time for such a thing and would instead rather avoid stress and worry from a number that could in the end mean absolutely nothing.

I told my MW and my doctor that I only wanted tests done for problems that I could do something about.  I don't think that's anti-science or stupid.

But yeah everyone saying "I will love my baby anyway!" is really embarrassing.  I assure you all that not everyone who opts out of genetic testing looks down on those who don't!  

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Snapdragon750

HilarityEnsued said:

Snapdragon750 said:

Genetic testing that can only tell you the baby's possible risk of having a possible genetic abnormality is totally different.  Not only are false positives pretty common,  

I believe, at least with the very early blood tests like MaterniT21, etc. that false positives are very very rare.  For the older tests that give odds instead of a yes/no, I do think the false positives are more common.

I admit that I don't really know which tests are which when I talk about them.  Everything besides the anatomy scan falls under the same genetic testing umbrella in my mind, and I didn't look too carefully into it because I already knew I wouldn't have it done if there wasn't going to be anything I could do to affect the outcome.  Thanks for the clarification.

But you know what, that is just me!  If I were freaking out over it and needed peace of mind, or if I felt like I needed time to prepare, or if knowing the odds made me more comfortable, I would do it!  To each her own.

dj99

sastahlman said:

@dj99‌, I didn't know that. I guess I should have done more research. I just made the decision based on my doctor with my first pregnancy telling me it isn't 100% accurate, so I just declined based on that. He didn't really offer much more information. Then I read a bunch of comments on here saying that they were told they had like a 2 in 30 chance and other things like that, so I just felt that it wasn't something that I wanted to deal with. As far as the anatomy scan, it will still be stressful, but I feel that it would be easier for me to accept if I am able to see in black and white what the problem may be. Fortunately, I had my first ultrasound yesterday (finally!!!) and everything looks good for the moment!

The first trimester screening, which includes the nt scan and a finger stick blood test will give you your odds. This is different from the genetic blood tests.

Snapdragon750

marybeth080710 said:

To say you "couldn't affect the outcome" is crazy to me. Early intervention makes a huge difference in Down Syndrome and other chromosome abnormality stuff. Imagine having a newborn and trying to educate yourself about that stuff... It sounds crazy. My friend had an occupational therapist come into her home to set up and teach them to use a therapy center before her daughter was born. They started doing specialized massages and exercises starting at birth. If you don't know what's coming, you are wasting valuable time when you could be helping your baby. So no, you can't "cure" your baby, but you are also depriving them of valuable resources in the first days of their life.

Is there a test that can tell you with 100% certainty if your baby is going to have DS?  My understanding was that there wasn't. 

I didn't know that there were such early interventions that could be done, so thank you for the info.  My doctor and midwife never mentioned this to me when it came up.

Snapdragon750

Thanks, ladies, this is info I didn't know and it's something to think about.

Ballet80

Honestly, I did the genetic testing because my doctor wanted me to do it, we had to use a sperm donor and our insurance paid for it. Also I got to find out the sex of the baby sooner, childish I know but I hated waiting since this was our first. It never crossed my mind that something would be "wrong" with our baby, because it is the baby intended for us whether it has a genetic disorder or not, we will love it regardless. My husband was freaking out that something would be wrong with the baby during the 2 weeks we were waiting to get the results back. He asked me how are you so calm about this, I said I am so happy to finally be pregnant, I could care less if this child has special needs, it won't change the love I have for it. So don't do it if you don't want to, you will love your child regardless. Love is love.

katietopaz

It's blowing my mind that several times in this thread alone people have stated how hurtful it is to say "I will love this baby regardless" and others have come in and posted those exact words. Are you not reading the rest of the board?

MrsPDX

VeganOnTuesdays said:

We have opted out as well. We are young and low risk so my doctor didn't see the need. I am comfortable with my decision.

This. I also feel like if something was wrong it would add extra pressure to terminate (which we would never) or added anxiety which we don't need. I understand those who want to be prepared, I just feel no matter how prepared you are it is what it is.

I know a family who had a horribly hard time getting pregnant, finally got pregnant, did genetic tests and found out there was severe gentic abnormalities. At every single appointment the doctor suggested termination. The couple was adamant on they were not terminating, but it didn't stop their OB from asking. After birth, the baby had two surgeries and is now a healthy baby.

McZimmer

DH wants the tests run, because our friends did not, and then were scared at 20 weeks by the u/s tech when she told them there was a shadow on the babies heart, which meant there might be a problem, but needed to do the tests to find out. Turned out to be nothing, so DH just wants to do them, in order to avoid something like that.
I honestly only agreed to the tests cause I wanted to find out the gender at 14 weeks instead of waiting until 20 weeks.

schaffnererika

I wish I would have opted out, I had an nt scan and got the results last night that things aren't looking too good. I'm a nervous wreck and don't have an appt. with a MFM doctor until dec 2nd.
praying everything is okay, I cannot stop worrying.

CTcoffeequeen

I'm young and low-risk and am having all genetic screening done.

Why? My 16 month old has a chronic illness that wasn't able to be diagnosed in utereo. It would have been totally different if we had known about it sooner. I would have been so much more prepared. Most of the first year of his life I spent trying to figure out how to be a mom and an advocate for his health and an expert on all things pertaining to him. It has been so stressful. I would love to glean anything about this new baby thay can help me prepare. It has nothing to do with the amount of my love and everything to do with educating myself.

simmonscm81

We decided not to because regardless we will love our baby unconditionally. Plus I definitely don't need the added stress.

Pintobean39

When I told people IRL I'm doing the genetic test they want to know why I'm doing it. I have to explain to ppl it's so I'll know if I need to deliver at a different hospital. They automatically assume if something is wrong I'll abort. People are so narrow minded.

We actually did genetic test before we did a transfer of embryos. I had to hear shit then too. You know, I was playing God and not taking whatever he gave me. Nope after 4 miscarriages in 10 months and having to have 2 D&C's because my body won't physically lose the baby on it's own I was tired of trying the old fashion way. I mentally and physically could to take anymore.

Everyone has something to fucking say about everything and they wonder why I don't give a shit about telling everyone I'm pregnant. I'm tired of hearing what everyone's got to say about the choices I've made, or plan to make.

CTcoffeequeen

I mean....the "I'll love the baby regardless"...it's not the issue at hand when it comes to genetic screening. How can people not see that? This is hurtful to me, as the mom of a child with chromosomal issues. I want to know BECAUSE I love my child-not because I won't depending on results.

Do the genetic screening or don't, but no need to use it as a mommy-love competition.

hannahandjoeyyy

My husband and I are, too. We believe God will give us a healthy baby but even if something were to be wrong, there's a reason we were chosen to have our baby regardless. Nothing could make us love him/her any less. Why worry ourselves?

CTcoffeequeen

I've written and deleted 3 different responses. I'm going to step out of this thread. Remember that whether you do the screening or not-you always need a good support system in place. Other people who can help you advocate for your child. That's most important, above all. Be on the same page with your partner on how you will handle possible crisis BEFORE you give birth. Talk about some of the worst case scenarios. Feel out some of the tough stuff. And pray/think/wish it never happens, because it probably won't.