CVS? Thoughts appreciated

[olien]

I am newly pregnant. This will be baby #3.

With #1 I was 38. After the bloodwork (AFP I think) the risk for Down Syndrom was 1:67. He was fine. With #2 I was 40. After the bloodwork the risk for DS was 1:9. She was fine. MANY USs done in both pg to rule it out & they found no problems. So an amnio wasn't done either time. At the time I remember reading that once you have a false positive you will have false positives with subsequent pg.

Well I will be 43 when I have this one. I am really contemplating a CVS. I live near some really great hospitals that have excellent track records. I do worry though about pg loss. I just hate having to spend the first half of the pg worried constantly. I am thinking of turning down the blood work & just having the NT ultrasound & see what that shows. Anyone else have experience with CVS? Any advice is appreciated!!

[satorifound]

I am seriously considering CVS with this pregnancy.  I will need to go to Denver, but it would be worth it to rid my boyfriend of most of his fears... 

This said... I am a little afraid.  I had a CVS procedure performed about 6 years ago with a surrogate pregnancy.  The NF test showed an increased risk, but the measurement was BARELY over normal.  The babies were measuring different which was the doctors main cause for concern (twins).  Anyway, we got the CVS and he freaked out my intended parents saying he thought something was wrong and so they chose to reduce the smaller baby.  Well a week later I lost the other baby.  All the amniotic fluid somehow drained out.  I guess the hole from taking the sample didn't heal up?  He had a heartbeat one day and the next didn't.  It was horribly traumatic.  I am so afraid the same thing will happen this time.  I truthfully believe the loss was from the CVS and not the reduction as the CVS was the only time a needle penetrated his sac.  We had a great doctor in NYC do the procedure, one of the pioneering doctors of CVS.  I was that 1%.  :(  Anyway, a week later the test came back showing no genetic abnormalities.  *sigh*  

So after all that I have an intense fear I will be that 1% again.  And yet I am considering it because if there is something horribly wrong I would rather know early...

[Chrisa]

Would you consider doing the Maternity21 test? It's much better than the 1st trimester screen (99% accuracy), and non-invasive = 0 risk to the baby.

[satorifound]

Originally Posted by Chrisa 

Would you consider doing the Maternity21 test? It's much better than the 1st trimester screen (99% accuracy), and non-invasive = 0 risk to the baby.

What is the Maternity21 test?

[andaluza]

I had the MaterniT21 test done and wrote about it here: http://www.mothering.com/community/t/1346580/had-an-amnio-yesterday#post_16896853

It will tell you about the 3 most common trisomies, but not the full spectrum of issues that a cvs/amnio would tell you.

Hope things go well for you!

[olien]

Originally Posted by satorifound 

  All the amniotic fluid somehow drained out.  I guess the hole from taking the sample didn't heal up?  He had a heartbeat one day and the next didn't.  It was horribly traumatic. 

I am so sorry to hear about your terrible loss.

I have been reading about this procedure & my understanding was that the amniotic sac is not touched. That the villi are outside of the sac on the placenta. I even found some great pics illustrating this. I may be wrong or he could have gone to far in. i was feeling more comfortable about the CVS after reading that it didn't enter the a.sac.

I never herd of the Maternity T21 test. Is it fairly new? They didn't offer it to me last time & the office is big on testing. Ugg. andaluza, I will definitely read what you wrote. Thanks!!

[satorifound]

You are probably right.  I know he put a needle through my abdomen and if it didn't enter the sac then I don't know what happened to the fluid. :(  Maybe he messed up with the needle he used for the reduction?  Horrible situation anyway. I told them I thought everything was fine and they shouldn't do it.  But that is me as a mommy who has never had anything bad happen...  They had been through some horrible things.

I went and researched the MaterniT21 test and they just started offering it in like November.  I am definitely going to do it and if my doctor won't agree I will find one who will.  

I have been reading about this procedure & my understanding was that the amniotic sac is not touched. That the villi are outside of the sac on the placenta. I even found some great pics illustrating this. I may be wrong or he could have gone to far in. i was feeling more comfortable about the CVS after reading that it didn't enter the a.sac.

I never herd of the Maternity T21 test. Is it fairly new? They didn't offer it to me last time & the office is big on testing. Ugg. andaluza, I will definitely read what you wrote. Thanks!!

[Chrisa]

Originally Posted by olien 

I am so sorry to hear about your terrible loss.

I have been reading about this procedure & my understanding was that the amniotic sac is not touched. That the villi are outside of the sac on the placenta. I even found some great pics illustrating this. I may be wrong or he could have gone to far in. i was feeling more comfortable about the CVS after reading that it didn't enter the a.sac.

I never herd of the Maternity T21 test. Is it fairly new? They didn't offer it to me last time & the office is big on testing. Ugg. andaluza, I will definitely read what you wrote. Thanks!!

 Yes, it was released last fall in selected markets, and I think now it's available more widely.

I wanted it done because I knew I wouldn't do CVS/ amnio, and found no comfort in their screening tests with the imprecise "1 in x chance" results. 

I had to push for it. My regular OB hadn't even heard about it in Feb. There's also a hefty copay ~$200. I think they're not promoting it because med offices and labs have no incentive to do so - they don't make any money off it as it's shipped to Sequenom for testing.

[olien]

Well, after looking into it more...I going to do it! Itslike a no brainer for me. I knew MDC was the place to come for insight. Chrisa, I can see how many offices wouldnt push for it. Forget about what is best for the patient & remember what fattens the coffers. I go in 2 wks to the Dr for the 1st time so we"ll see what they say. I also found a place 30min from me that does the test. Thanks again everyone!

[satorifound]

Originally Posted by olien 

Well, after looking into it more...I going to do it! Itslike a no brainer for me. I knew MDC was the place to come for insight. Chrisa, I can see how many offices wouldnt push for it. Forget about what is best for the patient & remember what fattens the coffers. I go in 2 wks to the Dr for the 1st time so we"ll see what they say. I also found a place 30min from me that does the test. Thanks again everyone!

I asked my doctor about it today and he had never heard of it.  He is going to do some research tomorrow though.

[andaluza]

I had to get it done at the perinatologist. My ob was suspicious when I brought it up after she said I shouldn't do the NT scan, but she ended up sending me to the perinatologist at 15 w because I tested as a carrier of the cystic fibrosis mutation and we needed counseling for that and tests for dh anyway. It was one of the tests that the perinatologist office offered me in lieu of the lack of NT scan and my desire not to do the cvs or amnio.

By the way, we have a PPO insurance and paid 235 for the test. My insurance refused to pay anything for the test, but Sequenom's policy (at least back in Feb. when I did it) was to charge us that amount and accept whatever (or nothing) the insurance company offered. I don't know how long they will use that fee structure.

[kparker]

I think I had that MaterniT21 test - at 11 weeks they took blood, did the DNA stuff, and also did the standard NT scan for the neck and nasal bone. It was very noninvasive and told us exactly what we wanted.

[Chrisa]

Originally Posted by olien 

Well, after looking into it more...I going to do it! Itslike a no brainer for me. I knew MDC was the place to come for insight. Chrisa, I can see how many offices wouldnt push for it. Forget about what is best for the patient & remember what fattens the coffers. I go in 2 wks to the Dr for the 1st time so we"ll see what they say. I also found a place 30min from me that does the test. Thanks again everyone!

I completely agree. To me it was incomprehensible that an OB would not be on the top of the latest research and know about this test (I switched since then). Not only did the studies appear in medical journals, but the main press also covered it extensively (WaPo, NY & LA Time, Boston Globe, etc.)

Provided that Maternit21 maintains the same level of accuracy as claimed, it's a no-brainer that it should replace 1st and 2nd trimester screenings, and a lot of people stand to lose a lot of money if that happens.

Frankly I am surprised that insurance companies weren't more proactive to support this test - at large scale it's gotta be much cheaper than the screenings.

Good luck, Olien!

Andaluza, that sounds about right for the copay. My insurance refused to cover it, but I haven't been billed extra.

[JudiAU]

I've done CVS with my current and last pregnancies. There is a local expert with a very, very low complication rate. I've never had any complications from it. Experience is everything in CVS. Most of the moms I know locally who are older than 35 have done it.

I am *so* grateful to have one procedure and skip this "risk this" and "measurements that." It makes having a pregnancy later in life a lot less stressful.

Based on these boards, CVS + homebirth + crunchy mama don't always seem to go together but I am really grateful.

Please note that if you get a postive on one of the new tests which most doctors *do not* know about yet, they still recommend CVS or amnio to confirm. The new test simply isn't comprehensive enough for me, at my age.