To CVS or not to CVS

warriorpimp · September 2014

I am 12 weeks. I took the maternity 21 test and it came out healthy/good. I did the nucal translucency ultrasound and nasal bone and nucal fluid are perfect per doc. BUT the bloodwork portion of the NT Ultrasound put me at what the doctor called "increase risk" for Down's syndrome. Or a 1/28 chance. My doctor is pushing me to take a CVS and I am really torn. If the baby has downs I would want to know. But the threat of miscarriage is really upsetting too. Does anyone have any insight?

daizedoo · September 2014

Are you over 35? I'm not 100% on this, but aren't most blood screens going to give you an increased risk result based on age alone? That's why they recommend the NIPT (materniti21, harmony, etc), because the risk of false positives is much, much lower.

If it were me, I would go with the results from the NIPT and NT.

Whitfry · September 2014

I was told that the NT scan has an incredibly high rate of false-positives. It's built to be over-sensitive.

If I were in your position, I would weigh my fear of miscarriage against my concern over having a baby with downs. If you choose not to have the test, will you spend your entire pregnancy stressed and scared about the "what if"?

I'd also check to see if there is another, more reliable blood test you could try instead of the invasive cvs test. That might get you your answer without the risk.

blinksmb · September 2014

daizedoo said:
Are you over 35? I'm not 100% on this, but aren't most blood screens going to give you an increased risk result based on age alone? That's why they recommend the NIPT (materniti21, harmony, etc), because the risk of false positives is much, much lower.

If it were me, I would go with the results from the NIPT and NT.

That's what I was told by my genetic counselor, so I second your post if the OP is in fact over 35.

Edit. Words. So hard.

Haps92907 · September 2014

NT scan is a screening test, which means it's meant to detect and increased risk, in other words a higher possibility that something might actually be wrong. Screening tests indicate the need for more definitive testing, like CVS or amnio. Most people who come up positive on the screening test will end up normal on the definitive test.

NIPT is considered more of a definitive test. It's meant to essentially replace CVS/amnio, not to show who needs CVS/amnio.

If the NIPT is normal, my understanding is that the risk if miscarriage from CVS would be much higher than the risk of the NIPT having been a false negative.

I would get a second opinion or speak with a genetic counselor before deciding. I think your doctor is actually misunderstanding the predictive value of these tests.

bdazzld · September 2014

Depending on the results--do you feel you could wait for the next round of screens in the second trimester/then consider amnio if it's still questionable?

mangomimosa · September 2014

@Haps92907 Actually -- NIPT is still considered a screening test & is not meant to replace CVS or amnio.

(I thought it could replace NT screen though...? Anyone know?)

"Does NIPT replace CVS/amniocentesis?
No. At the present time, NIPT is a screening test, meaning that it cannot tell for certain if your baby has Down syndrome. If NIPT detects Down syndrome in a baby, more testing is needed to see if the baby really has the chromosome change. This is done by tests called chorionic villus sampling (CVS) or amniocentesis. CVS and amniocentesis tell for sure if the baby has Down syndrome, trisomy 18 or trisomy 13. Both amniocentesis and CVS have a small chance of miscarriage" (random google find from a hospital website)

HOWEVER I completely agree that chance of miscarriage from CVS might be higher than the chance of NIPT being wrong. I would definitely talk with the genetic counselor -- this becomes a stats battle -- sensitivity and specificity stuff... You have a more accurate screening test saying babe is healthy. Chances are, it is -- but the worry is now hanging over your head. I'm so sorry for that.

I hope you find a way to move forward that feels right to you.

daizedoo · September 2014

mangomimosa said:

@Haps92907 Actually -- NIPT is still considered a screening test & is not meant to replace CVS or amnio. (I thought it could replace NT screen though...? Anyone know?)

It had better be a replacement, because Kaiser won't let me do both. I can do NT or NIPT. Not both.
:-q

mangomimosa · September 2014

That makes sense to me, @daizedoo‌ ! I feel like (in my limited knowledge) the OP shouldn't have even been offered the NT because she already had a more accurate screening test for the same thing.

cesquer · September 2014

I was told chance of mc with cvs is 1/300. Not that high... I would do it. I did amnio last time and it wasn't that bad either. I prefer to know, but it's a deeply personal choice.

warriorpimp · September 2014

Yes I am over 35 and yes you are right. I appreciate the advice. I know it makes sense. Struggling with the maybe anyway...

headyhansen · September 2014

Hello, I just wanted to let you know that it truly is a personal decision. I got my verifi test back and it stated suspected for Trisomy 18. I've lost a child to downs about 5 years ago. I'm 32 now, so for me it was heartbreaking to hear something was suspected. I opted for the CVS. I had an amino with my son I lost 5 years ago. I should get results back at the end of the week. But for me it's a peace of mind....although a risk. I want to try to enjoy this pregnancy... I know I would worry too much not knowing. So for me CVS made sense. Good luck with your choice. Whatever you decided will be perfect for you! Big hugs to you through this journey!

chucktgirl · September 2014

For ME in this situation, I would tend to trust the Mat21 over the NT and would not get the more invasive CVS. ...UNLESS you intend to terminate if the results show strong indicators of Down's - then I would get the CVS, so you can proceed with your plan. But if you plan to continue to birth even if you were certain your child would have DS, then I see no reason for the CVS. It's a tough decision all around, but, that's my opinion anyway.

labgrand2012 · September 2014

mangomimosa said:

That makes sense to me, @daizedoo‌ ! I feel like (in my limited knowledge) the OP shouldn't have even been offered the NT because she already had a more accurate screening test for the same thing.

I had both the NT scan and the Verifi Blood test (due to prior loss from T13). The NT scan also looks for markers of other genetic abnormalities besides the 4 the blood test looks for. So I hope they continue to do both to give a more accurate idea if anything is wrong.

warriorpimp · September 2014

Thank you and good luck @headyhansen‌! Wishing you and your baby the best!!!

Lillovebug79 · September 2014

I am also over 35 and my OB only offers (and my insurance only covers) either the NT scan or Harmony test (same as MaterniT21). I would imagine that the MaterniT21 is much more accurate for Trisomy 21. We chose the Harmony test for that reason. It has a 99% accuracy rate for Trisomy 21. If our Harmony comes back positive for anything, then we will have CVS. I am sorry you are facing this decision but the NT scan has a lot of false increased risk readings, the MaterniT21 does not.

Engineer81 · September 2014

I did the verifi and the NT ultrasound, not the blood work, as the u/s looks for more than just Downs. I don't envy the decision you need to make because it's a tough one. The CVS may be beneficial because you could know for sure if the baby does have Downs. It wouldn't be to decide to terminate, but so you can start preparing and have any needed specialists during your pregnancy and after baby gets here. From what I understand Downs babies can have heart problems and digestive problems that need care right away. I hope you find peace with whatever decision you make and that you have a healthy happy baby.

mcecilew · September 2014

I'm over 35, this is my last chance for a baby, and I'm likely pushing my luck at this point.

My obgyn informed me of my screening/testing options. My maternal fetal medicine did the same, but being this is my last chance and previous miscarriages, she suggested not to risk things with CVS sampling. She felt confident in the verifi screening paired with the NT scan. The verifi screening is 99% accurate.

Ultrasound today, and so far everything has come back normal and looks good

I was also advised by both drs that at my level 2 ultrasound at 20 weeks, we would get another in depth look at development. I could at that point choose to do an amino if we needed further testing, which carries a lower risk of miscarriage.

They've also informed that In IL a pregnancy can be terminated up to like 23(?) weeks. I don't know that'd it'd be an option for me at that point, as for the first time in 4 pregnancies I've heard a heartbeat, and seen my lil one on an ultrasound

Yet I also fear that my ole age at birth, I might not be around as long as my child may need me to support them if he/she had special needs/couldn't thrive or live on their own.

Wishing for the best, and hope the same for all you March momma's

warriorpimp · September 2014

@mcecilew‌ thank you got your response and best of luck with your pregnancy. Wishing you a happy and healthy baby

warriorpimp · September 2014

UPDATE. I met with a genetics counselor and was told that the cvs 1/200 chance of miscarriage is based on a study done 30 years ago and grossly outdated/overstated. There have been no recent tests but she showed me a few diff articles where doctors put the actual risk to be more like 1/1000 or even less likely. This made me feel much better. I am doing it next Thursday. Positive vibes appreciated and wishing everyone the best and so appreciative of everyone's comments!!!

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