Quad/AFP test - What did you do?

MrsMcJamie · July 2009

So, just got back from the doc - all is well!

I am kind of confused on what to do on the whole quad/AFP test though. We opted out of the first tri screening (which is for the same things) bc they just made it sound like "extra" and not necessary. IDK, we just didn't do it. Now today, the nurse and doctor kind of made the quad screening sound like "if you want"... from what they said, DH and I got a) it can't truly tell us one way or the other if there's a problem w/ Downs, Trisonomy or Spina Bifida, b) it doesn't change the way the doctors would care for us and c) it wouldn't change the way WE would handle the pregnancy. She also said since neither of us have any of those diseases in our family history and we're young we have less than a 1% chance.

Did anyone NOT do any screening? If you did, can you sell it to me a little better than they did?

MrsHughesNC · July 2009

I'm not sure I can sell it to you, but we did all of the optional screenings. It does just show sort of a likelihood or probability of chromosomal abnormalities, not necessarily whether or not those conditions exist. Any answer wouldn't have changed the way we'd have handled the pregnancy either, but we just wanted to be as informed as we could, I guess. But some people get false positives, and go through a whole range of unnecessary emotions, so I can see why people don't do them. But, they were all covered by our insurance, so we did them all.

becki777 · July 2009

I think the only testing we did was for cystic fibrosis. The dr. recommended it because its just a blood test and no big deal. I didn't get any further testing for the reasons you mentioned.

sophabelle · July 2009

we didn't do any of the screening. for one i was afraid my insurance wouldn't cover it, and regardless it wouldn't change our minds with the pregnancy - plus there are so many false positives with that test that i didn't want to freak out over something that wasn't definitive. that was my biggest reason honestly - i understand the desire to be informed and prepared should you have a higher risk for downs, etc. but i just didn't need the extra stress.

mrsmikey · July 2009

I did all testing that was available to me. Knowledge is power. If there was something wrong with my baby, I would want to know and be able to prepare for that. Not only could I prepare, but the Drs could prepare for a SN delivery, and your prenatal care might change too. I think Amber's situation is a good example of that. What if she hadn't known about Megan Grace's condition before she was born? No thank you.

That said, you have to remember that it is not a positive/negative test. It gives you a probability. From those numbers, you can choose to do additional testing to get more information. You hear of "false positives", but with a quad screen there is really no such thing. Sometimes your results are more probable for certain conditions just b/c of your age or something like that. I think there is alot less stress with the results if you truely understand how the test works and what the results mean before you have it done.

But for some it's just not worth the stress, so they don't do it. And that's great. Just get all your info and facts together and make an INFORMED decision. Not that you won't, but you'd be amazed at how many people don't.

Mrs.LLG · July 2009

I've done every screening offered to me. My thought process was that if there was more than a slight change that something could be wrong, I wanted to be prepared. I wanted to know everything I could possibly know so I wouldn't be surprised. I hate surprises

ECUGirl2004 · July 2009

I don't think I did that test. I know I turned down several tests in the beginning, but there was one test that they took blood for when they did the NT scan and that's the only testing I had done. I remember that they looked at me like I was crazy for declining, and I think even my midwives were surprised that I declined whatever screening they offered in the 2nd tri, but I just didn't want the additional stress/worry that comes with the odds they give you with blood work. I honestly can't remember all of the reasons I declined now, but I know I felt strongly about it at the time! :P

MrsMcJamie · July 2009

MrsLee04:

you would have a level II u/s......which is something you're probably going to have anyway.

Right - she did say they could probably *see* spina bifida in the August US.

I'm glad I asked - this is the danger of "lurking" I assumed everyone just did it. I'm glad I'm not the only one who got that impression of the test, yet I still don't know what to DO!!!!!

SpeedGlenn · July 2009

We did it so that if there was a chance that there was something wrong with the baby the doctors would be prepared upon delivery. As in, if the baby would need special care we'd have docs already in place and it wouldn't be an emergency situation. Also, it would have meant that we would have prepared for the baby's arrival differently - if there was a significant risk of DS or SB, we would have had to have different childcare in place. Further, if we had a child with disabilities it might have meant that I didn't go back to work at all - which would have meant that we would need to prepare financially.

All in all - even though it didn't change the outcome of the pregnancy, meaning pg=baby, it meant that we would have at least a little bit of an opportunity to prepare ourselves for the eventuality of a child with a disability.

Like School House Rock's says, "Knowledge is power."

BackthePack · July 2009

::Quickly checking in from the beach::

We didn't do any of the screenings, mainly for the reasons you mentioned. We knew it wouldn't affect how we would handle the pregnancy, so we decided not to bother with it. I've had a lot of friends who had false positives which caused a LOT of worry...something I didn't want to deal with. I wanted to enjoy my pregnancy, even if it meant "ignorance is bliss". They find out quite a bit at your anatomy scan, so we decided just to go with that. I think go with your gut feeling, whatever that may be. Good luck!

::skips off to the sand!::

alchris · July 2009

I'm not quite so much all or nothing -- we didn't do the NT scan but we did do the quad screen. I just wanted to be informed if there were any issues that we should know about before birth. It wouldn't change my pregnancy itself, but if I were going to have a child with Down's or with Spina Bifida I really wanted to be prepared for it. I passed on the NT scan because the quad screen would be more comprehensive and valid (I think?) and I didn't find it necessary to do both. It included the big u/s at 18 weeks, plus bloodwork, so rather harmless IMO.

raceyrae · July 2009

We only did the NT scan for both pgs (and any bloodwork tests but I don't know what they all were). Like others, I wanted to be prepared if there was anything wrong that could be identified early. Given the odds from our NT scans, we choose to not do any further testing.

bobsbride2006 · July 2009

We did more testing, mostly because I'm "advanced maternal age" (35) and mostly because I would want to be prepared. As pp said, sometimes you need the pediatrician at the delivery, etc. I would just want to know to have everything in place if the baby needed any special care. Having said that, when you get the news that everything is ok, it really brings a sigh of relief and keeps you from wondering what if something is wrong?

toadslove · July 2009

My opinion is get the testing. You Dr's office can clarify with your insurance if it is covered. Personally I agree with many of the ladies on here that while it would not have changed how I handled the pregnancy it absolutely would change how my doc's cared for my pregnancy and how I prepared for life after a baby with SN. Deliveries of babies with SN can require special doctors, etc.

Sure DS and other chromosomal abnormalities can be picked up later on at a level 2 u/s but this testing can help decide if you need further testing earlier on. For use we came back at 1/52 for Downs -- we opted to have further testing done including a CVS test which ruled out downs, trisomy, among a huge list of things they rattled off to me when I had my results given back.

For us -- we wanted to know to prepare. I agree with Speed -- knowledge is power. And as much as we prepare for our kids by picking out the perfect bedding, perfect crib, carseat, etc...I cant imagine not preparing when it comes to my childs health.

MrsHughesNC · July 2009

Someone mentioned she'd probably get a level II u/s anyway... you don't typically get those unless there is an increased risk, or to further look into something suspicious, do you?

We had one, but it was because we had a history of birth defects on both sides. I was not under the impression that that was routine..

Just wondering...

mrsmikey · July 2009

MrsLee04:
mrsmikey:

I think Amber's situation is a good example of that. What if she hadn't known about Megan Grace's condition before she was born?

But didn't Amber learn of Megan Grace's condition from her level II u/s....not any blood screenings???

I prefer to let Amber answer, and I think she's OOT. I think from her u/s they thought Megan was a dwarf, and further u/s and blood tests revealed her true condition. But that's just an example, maybe not the best one. Sure, a level II u/s will show most things, but not always necessarily so. But I do know Amber is a HUGE advocate of having all the testing done, since she's not here to say so herself.

There are times where people's u/s show nothing wrong, and their baby does have some condition. It's up to you whether or not you want to take that chance. Obviously it's a personal choice.

toadslove · July 2009

MrsHughesNC:

Someone mentioned she'd probably get a level II u/s anyway... you don't typically get those unless there is an increased risk, or to further look into something suspicious, do you?

We had one, but it was because we had a history of birth defects on both sides. I was not under the impression that that was routine..

Just wondering...

I was under this impression as well -- that level 2s arent standard -- we had one done because of our increased risk of DS -- but I didnt think they were standard. They do an anatomy u/s but my understanding is that its not a level 2....correct me if im wrong.

WendyNC · July 2009

Our office doesn't have the equipment yet to do the NT scan at 12 weeks (or whenever you do it). We did do the quad screen both pregnancies. It was just the right decision for us to be more prepared.

It's such a personal decision, with no right or wrong answer. Good luck making your decision!!!

NatPhoto09 · July 2009

sophabelle:
we didn't do any of the screening. for one i was afraid my insurance wouldn't cover it, and regardless it wouldn't change our minds with the pregnancy - plus there are so many false positives with that test that i didn't want to freak out over something that wasn't definitive. that was my biggest reason honestly - i understand the desire to be informed and prepared should you have a higher risk for downs, etc. but i just didn't need the extra stress.

exactly this...

kjennnn · July 2009

Due to my history (2 back-to-back miscarriages), I opted to do all of the testing that was offered to me. I did the CF screen, Ultrascreen (similar to NT scan+ bloodwork), as well as the AFP. My reasoning was that I was panicked enough this pregnancy, anything that could alleviate or prepare me for what lies ahead would be a plus.I would prefer to know and prepare ahead of time if at all possible. A plus was that during my 20 wk u/s the tech thought she saw a cyst on the babys liver...when I went to the specialist, they determined it to be nothing, but seemed very reassured by the fact that my NT scan results were 1/10,000 and my AFP was negative so i'm glad that I had them done at that point. I have great insurance that covered all of this testing as well, though I would probably do the testing out of pocket if it was a reasonable cost.

crescentmoon99 · July 2009

We did not do any of the testing. I agree with the girls who say knowledge is power, and if any of those tests could have told me yes or no did Liam have any problems, I'd have had it. What I didn't want was to be told he had a 1 in 100 chance of having something, which is what it does tell you. Then I worry the whole rest of my pregnancy, when there's a 99% chance he's perfectly fine.

If you'd be willing to go ahead with a CVS or amnio if you got bad results from one of the blood tests, then I'd say have it. If you wouldn't (and I wouldn't, which is why I didn't) then don't. It's only going to give you odds, so there's no point in having that to worry about if you can't know for sure.

crescentmoon99 · July 2009

MrsHughesNC:
Someone mentioned she'd probably get a level II u/s anyway... you don't typically get those unless there is an increased risk, or to further look into something suspicious, do you?
We had one, but it was because we had a history of birth defects on both sides. I was not under the impression that that was routine..
Just wondering...

Pretty much everyone these days gets a level II. It's what people call the "big u/s" where you find out the gender and all that. It's not really an u/s to find out the gender...it's a level II scan to check for any visible defects. I don't think I've seen anyone on these boards who didn't get a level II.

uncjules · July 2009

As I'm not pregnant, I can't really help answer your question. BUT, I did want to thank you for asking this. When I went to my doc for a pregnancy consult, she asked if I wanted a cystic fibrosis screening, which I declined. But, it got me thinking about tests I would want to do. Seeing everyone's responses has helped me out a lot. So, THANKS!

mrsmikey · July 2009

MrsLee04:
mrsmikey:
MrsLee04:
mrsmikey:

I think Amber's situation is a good example of that. What if she hadn't known about Megan Grace's condition before she was born?

But didn't Amber learn of Megan Grace's condition from her level II u/s....not any blood screenings???

I prefer to let Amber answer, and I think she's OOT. I think from her u/s they thought Megan was a dwarf, and further u/s and blood tests revealed her true condition. But that's just an example, maybe not the best one. Sure, a level II u/s will show most things, but not always necessarily so. But I do know Amber is a HUGE advocate of having all the testing done, since she's not here to say so herself.

There are times where people's u/s show nothing wrong, and their baby does have some condition. It's up to you whether or not you want to take that chance. Obviously it's a personal choice.

But see, this is what I am saying. Amber found out there was an issue at the level II. It may not have been the correct diagnosis, but it is what prompted them to go on and have further testing. And I have no idea here.....but you say she went on and have blood testing, I'm pretty sure those tests would not have been these screenings and rather something more advanced, since the screenings don't give diagnoses just probabilities for things that could be wrong.

I'm not flat our discouraging the testing, I just think it's very flawed and there are more accurate ways to screen for issues and to help prepare for those posibilities.

OK, just take Amber's situation out of the equation. Use this one. A friend of mine from HS had a baby girl missing an arm. An ARM. She had an u/s at 20 weeks. How they missed it, I do not know. Dr error obviously. But it happens. They don't always catch everything with an u/s, even a level II. So to say they would catch anything during the u/s is just not true. Drs make mistakes and miss things all the time. If you're ok with that, then fine. But if you're not and you want to know, then that's what the blood tests are for. The best way to screen for issues is by doing several, different tests. Like having the u/s AND quad screen, and further testing if necessary. That's the BEST way to know, if you want to know.

BlairWaldorf · July 2009

We did not do the Quad/AFP test.

We did do the NT scan, or the "First Trimester" screening which included an u/s and bloodwork, but only because we had a previous loss due to choromosomal abnormalities.

When we received good numbers for those, we decided to opt out of any further testing other than routine things like the "big" u/s.

I have no regrets doing this. We figure that anything "big" they will find at the u/s or another time, & we wouldn't terminate anyway. Yes, knowledge is power, but I also was beginning to feel run into the ground with testing & test results & stuff...it just wasn't for us when we looked at the big picture, although I certainly understand WHY many people do opt for the testing.

GL with what you decide!

mrsmikey · July 2009

MrsLee04:

mrsmikey:
OK, just take Amber's situation out of the equation. Use this one. A friend of mine from HS had a baby girl missing an arm. An ARM. She had an u/s at 20 weeks. How they missed it, I do not know. Dr error obviously. But it happens. They don't always catch everything with an u/s, even a level II. So to say they would catch anything during the u/s is just not true. Drs make mistakes and miss things all the time. If you're ok with that, then fine. But if you're not and you want to know, then that's what the blood tests are for. The best way to screen for issues is by doing several, different tests. Like having the u/s AND quad screen, and further testing if necessary. That's the BEST way to know, if you want to know.

But the quad/AFP screening wouldn't have shown that a fetus was missing an arm. I understand what you're trying to say, but you have to remember these specific tests (quad/AFP) do nothing more than give a probability for a few possibilities. I'm no expert, but I am pretty sure they do not give probabilities for missing limbs. I think they are geared towards things like Down Syndrome, Spina Bifida, Trisomy 18, etc. There are tons of other problems that these screenings are not going to pick up.

And in my defense, I never said a level II would always catch everything. I just said they do catch most things these days, and that would prompt the patient to go on to the further, more accurate testing (like amnio/CVS). Level II ultrasound can actually diagnose issues, whereas the quad/AFP cannot. Most people who have high probability results on the quad/AFP have to go on to the the level II anyway because it can diagnose.

I KNOW. I'm just saying that they miss alot, sometimes very big things, with an u/s. It's only the first step to catching something. There are things an u/s won't pick up. That's why they're done in combination. And most insurances do pay for a quad screen. There's a reason for that. If you're willing to do an amnio or CVS from u/s findings, then why would you not also do a quad screen? I know my OB feels VERY strongly about the quad screen. I know I'm not going to change your mind, obviously we have different opinions on this. And I'm not trying to do that anyway. I just want to make it clear where I'm coming from with my feelings on this, and that they are very educated and well thought out. Not just a feeling.

toadslove · July 2009

MrsLee04:

And in my defense, I never said a level II would always catch everything. I just said they do catch most things these days, and that would prompt the patient to go on to the further, more accurate testing (like amnio/CVS). Level II ultrasound can actually diagnose issues, whereas the quad/AFP cannot. Most people who have high probability results on the quad/AFP have to go on to the the level II anyway because it can diagnose.

Actually when you have a high probability Dr's typically want you have the CVS or Amnio....but due to misinformation/misinterpretation on high risk of miscarriage people hear due to these two tests most people OPT for the Level 2 over the CVS/Amnio.

And Im not sure a Level 2 can diagnose -- it can show 'markers' but it does not diagnose -- its another tool used to aid in diagnosis.

toadslove · July 2009

MrsLee04:
It's not always 100%, but it can diagnose some things.

Alex had markers for DS as well -- the only difinitive answer was through extraction of DNA cells via CVS or amnio. Sorry -- u/s do not detect 100% but DNA does not lie. Thats all I am trying to get across. I dont think anyone was saying you or anyone else is or was a bad mother for chosing NOT to do testing. I think the misinformation out there that it will get picked up on a level 2 is outrageous though. I know I consulted with my dr on this long and hard and when she told me nothing was 100% besides the extraction of DNA that was the only answer for me.

From the point people are saying that the testing doesnt give you a difinitive answer well then -- if a level 2 is not 100% then it should be considered a screening as well.

toadslove · July 2009

MrsLee04:

My debate is over the early screenings.

According to Johns Hopkins the first tri screen has a 96% detection rate for DS and is higher for trisomy 13 & 18.

https://womenshealth.jhmi.edu/ob-ultrasound/ultrasound/FIRST%20TRIMESTER%20SCREENING%20info%20sheet.pdf

Trisomy18.org says that the Level 2 u/s is another screening method, not a diagnosis

https://www.trisomy18.org/site/PageServer?pagename=whatis_us

The March of Dimes says that the first tri screen is as accurate as the second tri screening

https://www.marchofdimes.com/printableArticles/14332_1167.asp

I think these organizations can speak for themselves. Its not random made up data...its fact. Early testing can help accurately screen patients for SN children. Sure a Level 2 can catch things as well -- but dont discount the accuracy of the early screenings.

toadslove · July 2009

MrsLee -- there are so many cases on all of the Nest baby boards with children being born with DS among other SN who had a level 2 u/s and it was missed. You said that twins skews the results which is why YOUR Mat Fet Med dr didnt rec it for you....and my Mat Fetal Med doctors recommended early screening and then the CVS and the level 2 was only secondary once my CVS came back normal.

I hate that we have taken away from the original post by going back and forth but the belief that a Level 2 will catch stuff has been proven wrong over and over again, I could start naming nesties who were on the tri boards with me, I could name nesties from our local boards, and I could name nesties from the SN boards who all went for the level 2 without any other testing and it didnt catch it, but with screening methods that catch 96% of the DS cases why not?

So yes to the OP i suggest early screening methods -- any and all.

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