To test or Not to test?

smile24k · April 2014

I go back to the doc for my monthly follow-up in 2 wks and I will be about 13 wks at that point. At my last appointment (9.5 wks) the doc asked us to start considering which genetic tests we wanted done. At the time we told her we would think about it, but we were leaning towards not doing any of the genetic testing because we wouldn't terminate regardless of the results. Now that I've been on these boards for a couple weeks I'm wondering if that is a good decision. I see some ladies on here doing the tests so that they can be prepared, which makes sense. But for me, I'm already paranoid about something going wrong, I think the tests might stress me out even more. Anyway, I would love to hear why you chose to do the testing or why you chose not to. I would esp. like to hear from others who chose not to do testing.

*Please forgive me if this question has been asked somewhere else. I'm relatively new to the boards and didn't check all the old posts.

moroccojade · April 2014

We will do some testing. How much, I am not exactly sure yet. We will start with the NT ultrasound. If it doesn't look good, then I think we will pay for the NIPT (Panorama).

But.. if the NT looks great. And the routine quad screen is fine, too? Then I can relax and enjoy my pregnancy. Even when I had my first at 31 -- it was still nice to hear that our quad screen produced excellent results. I cannot imagine going the full 40 weeks not having a clue of the challenges we might be facing.

As for terminating... I will never say never. A woman I know was carrying a baby missing most of her urinary system. Suffice it to say that if they wouldn't have ended the pregnancy, the poor little baby would have died a very painful death in the womb. Sorry about the horribly sad story. But there are good reasons to do some investigating -- and there even can be a kind, compassionate reason to terminate.

MrsL2B · April 2014

I'm having all the testing done that I can because 1) science is neat, 2) I ways like to know as much about what I'm facing as possible. I'm obsessive about my health research. There are some conditions that show up in the chromosomal and advanced ultrasound screenings that are good to try to prepare for (like potential for learning disabilities and correctable congenital defects), and then there are problems (like the one PP mentioned) where unfortunately survival is unlikely. I can't imagine being fully prepared for that, regardless of the decision you make with that information.

Jennys9 · April 2014

Don't do the tests. You deserve to enjoy your pregnancy and not stress.

Here is what my reproductive endocrinologist said to me: The only reason to take the risks of the early tests such as the cvs, amniocentesis, PUBS- is if you plan to "do" something with the information. Meaning: the only reason to put yourself through the stress and risk with the baby is if you would have an abortion.

Almost everything else can be determined at the 20 week ultrasound. You will have plenty of time to prepare, and without risking your baby.

I had a friend who was 100% going to abort if her baby had a chromosomal abnormality, downs, or a congenital heart defect. The first test shows if you have high probability, which she did. Then she had to stress until her amnio. She did not announce her pregnancy in case she terminated. She would not look at her baby on the ultrasound because she didn't want to bond in case she decided to end his life. In the end after the amnio he was fine & healthy, but she went through all the stress for nothing.

I knew I wouldn't abort and would love my little guy anyway, but I understand not everyone feels this way. When I told my OB I was opting out, he said the majority of the women at his practice don't take the tests and all of his staff do not. Again, you'll find mostly everything out at the 20 week and then there are less invasive tests if you need more information.

springbeduk2 · April 2014

I have opted for all the tests my midwives/docs have recommended so far though did think about each one first. Part of why we ended up deciding to have each is because, like a pp said, science is cool and generally I/we (dh and I agree on this one) like to have information when available rather than not. Also having had 2 miscarriages prior to this pregnancy we were generally nervous and not knowing the cause for those made me wonder if we did maybe have a higher than average probability of some sort of problem. Then there were also specific reasons for each one. I had the Mat21 because 2 of the 3 trisomies it screens for have very grim prognoses and what seemed like would be very painful/low quality of life for the baby if he/she even survived until the birth, so I would probably have terminated if one of those were confirmed. I almost didn't want to test, though, b/c I think if downs' had been found dh and I would have disagreed (I'd want to keep/continue). Then for the screening for spinal tube defects (another blood draw) it seemed like it would be good to know in advance since maybe something could be done to reduce the impact if a problem were found. Maybe. Though that one I wanted to have as late in the testing window as possible to leave the least time between its results and the A/S in case the screening tests showed a higher than usual risk (since it is just a screening based on a hormone level not a true test) and I wanted to avoid anxiety. Then the docs at the place where I had my A/S (standard 20 week ultrasound- checks lots of stuff - though even this you could opt out of; we just really really wanted to see the baby and have confirmation that things were going OK or if there were any problems, how bad they were and what if anything could be done about them) recommended (and my midwives passed along this recommendation and did not argue against it) growth scans every 4 weeks and BPPs weekly starting sometime in the 30s (I think maybe it was supposed to be 32 weeks but I missed the first few?) because I'm even older than regular AMA (39 is their threshold for this recommendation). Again, I almost didn't go for these, but then ... it did seem like a case where if a problem was found (like if the placenta got bad way early or something) that could lead to a course of action that could save the baby so then it seemed like we should. Also it's fun to see the baby on ultrasounds. None of these tests have known risks, though. I probably would have needed way way way more convincing to go for a CVS or an amnio.

I did NOT want to have the standard NT scan/quad screen, though, because I felt like there would be too big a chance of a false positive (or false concerning result, since screenings don't technically have "positives" that would just cause more anxiety even though there would still be a good probability of everything turning out OK. Luckily I was offered Mat21 as an option instead right off the bat instead of having to argue for it.

To test or not is a very personal decision and each test is different and can be considered separately. Whichever choice for each test that will give you more peace of mind (or cause less additional anxiety) is OK and that is different for different people. For me the tests have helped me relax and enjoy the pregnancy, but for others (as mentioned above) not testing might do that better. If your health care providers can't/won't give you clear explanations of the reasons, pros, and cons for each test and respect that it is your choice whether or not to have the test(s), look elsewhere!

dragonfly711 · April 2014

I am40 hubby is 42. Hubby has a nephew that has Downs. We just wanted to know to prepare.

The genetic testing we did was the NT scan which is an US and Materni21 bloodwork. I was not going to so amino unless necessary. I had a Mmc a year ago so amino was just much for me. Bloodwork and US are not easy ao that is all we did.

All was fine.

2ndGeneration · April 2014

I am going wednesday for genetic counseling (whatever that is), the nt and bloodwork.

In previous pregnancies, I declined testing. I considered declining it again, but my ob (who is low-intervention) explained that some people do it to be prepared. We will not terminate or even do anything invasive, but I decided to do the screenings. I'm not worried really about an abnormal result, although I understand the risk is higher (I'm 42).

I have still considered cancelling the appt. But I think I'm going to go.

shaylagirl · April 2014

Just my own personal opinion; we opted to skip all genetic testing. We knew we wouldn't terminate, neither of us wanted the stress or the additional costs related to testing. The only way we would have considered testing is if there were programs or assistance/aid offered, and...we can get that info after delivery just as easily as pre-delivery.

My OB/GYN and his wife (also an OB/GYN at the same practice) both declined testing themselves, for many of the same reasons.

That all said; I think EVERY person needs to do what eases their stress/worries/concerns. Be that through testing or not testing. There's no right or wrong here.

smile24k · April 2014

Jennys9 said:
I knew I wouldn't abort and would love my little guy anyway, but I understand not everyone feels this way. When I told my OB I was opting out, he said the majority of the women at his practice don't take the tests and all of his staff do not. Again, you'll find mostly everything out at the 20 week and then there are less invasive tests if you need more information.

What happens at 20 weeks?

I totally get being prepared. Normally I want to know everything I can about something so I know my options, but with this I just think if I found out something was wrong with the baby I would be depressed the entire pregnancy. For the ladies who did the various tests, did anyone find out anything disturbing and if so, how did you handle that with the rest of the 9 months in front of you? Of course if tests show everything is good it is easy to relax and enjoy, but if something is wrong and you know you still don't want to terminate....

Thanks for sharing your thoughts/experiences. I think I will look into exactly what genetic counseling is and try to find out more info on the tests in general.

Eastie156 · April 2014

I am 35 and just underwent Panorama testing. The results came back indicating a high risk for Trisomy 13. We just had our cvs testing and are currently waiting for the final results. Depending on that, we may have to go on to amnio for more testing. Am I happy I went with the testing? Yes, because if this baby has Trisomy 13, it's highly likely she won't make it through 40 weeks or when she's born an even higher risk she won't leave the hospital. I'd rather know that now that think everything is fine/not fine than m/c (again) or give birth at 40 weeks to a potentially very sick baby that won't survive. That to me would be heart breaking.

2redtulips · April 2014

We did the Materniti21 test and another blood draw to check for spina bifida (we had an increased risk for that due to family history).

I am so glad I did both. They lifted a giant weight of worry off my shoulders and I am now able to enjoy this pregnancy a lot more.

It's a personal decision, of course, but I am glad I chose to do some testing.

shaylagirl · April 2014

smile24k said:

Jennys9 said:
I knew I wouldn't abort and would love my little guy anyway, but I understand not everyone feels this way. When I told my OB I was opting out, he said the majority of the women at his practice don't take the tests and all of his staff do not. Again, you'll find mostly everything out at the 20 week and then there are less invasive tests if you need more information.

What happens at 20 weeks?

20 weeks is -usually- when they schedule your anatomy scan of the baby.

flyinmommy · April 2014

We did the NT and the panorama and was happy to have the reassurance. They were easy and noninvasive.

smile24k · May 2014

We ultimately decided not to do any testing (other than required tests). For us we want to enjoy the pregnancy and if I less than good news I would be paranoid the entire time, which wouldn't be good for me or baby. This is definitely a personal decision and I don't think there is a right or wrong answer.

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