Positive AFP screening - Mothering Forums
September 2010 > Positive AFP screening
Kellyh_01's Avatar Kellyh_01 08:22 PM 04-20-2010
We received positive AFP results today. Our risk for down's syndrome is 1 in 15. We had the first trimester screening done with the NT scan and at that time the risk was 1 in 170, which seemed pretty low. They moved my level II ultrasound up to May 3rd, and we'll be having an amniocentesis as well. Any words of encouragement? Anyone with numbers like 1 in 15 that had it turn out okay?

Kelly

Laurski's Avatar Laurski 08:28 PM 04-20-2010


No words of experience, since this is my first. I just hope everything turns out ok.
RedOakMomma's Avatar RedOakMomma 08:29 PM 04-20-2010
1 in 15 is still very, VERY in favor of not having a child with down syndrome. If I have my math right, that's a 93% chance of everything being okay. Those are good odds. I think the amnio and ultrasound are good ideas, and will put your mind at ease. In the meantime, focus on that 93%. Those are very good odds, and anyway--the test tends to give you worse odds than you really should have.
Jrene's Avatar Jrene 08:35 PM 04-20-2010
This is the reason why I declined this test. I couldnt spend the rest of my pregnancy wonder "if". My Dr told me 5% of these test come back with a false positive. I dont know if they can re-do it and pull blood again or not. Not sure how this works. But I say dont worry until you are for sure it is what it is.

Good luck sweetie!
MaerynPearl's Avatar MaerynPearl 08:36 PM 04-20-2010
I had similar odds of being able to carry DS to full term without problems after we had a placental abruption at 17 weeks... didn't have another problem due to the abruption the entire pregnancy and now he is a happy (and usually healthy, but he has a cold right now) 7 year old!
Monkey Keeper's Avatar Monkey Keeper 08:45 PM 04-20-2010
I'm so sorry for your disconcerting news today. I think ROM has an excellent point of view to take right now. Follow your gut in terms of additional testing and know that you are in our thoughts.
Bokonon's Avatar Bokonon 08:46 PM 04-20-2010
DDC crashing

With my first, my AFP came back at 1:23. During the level II u/s, 2 soft markers were found (a bright spot on his heart and polydactyly, which isn't typically a Downs' trait, but can be for other trisomies). These doubled the risk to about 1:11. We went ahead with the amnio, which was normal.

But I did end up developing severe preeclampsia. Sometimes the "false positives" are actually indicators of a placental issue, but AFAIK, this correlation is still being researched. So it probably warrants monitoring but not worry.

With my second, the AFP came back at 1:16. There were no soft markers this time, so we declined the amnio, and I just knew it meant I was going to develop pre-e again, and I did.

That said, there are a lot of women who develop pre-e and have normal AFPs. It's certainly not an exact test, but I didn't regret having it, even when waiting for the amnio results in my first pregnancy.

I HTH some. Good luck - I hope your level II goes great and you have an issue-free remainder of the pregnancy!
orca's Avatar orca 12:10 AM 04-21-2010
With DS (my first pregnancy) my prenatal screening came back with a 1 in 4 chance of having Down's. We had the amnio to be sure. Everything I read made me quite sure that preparing myself mentally for a special needs child was the right thing to do. In the end, the amnio showed he did not have Down's. I have no idea why the initial results were so unfavorable to a healthy outcome. I did have a LOT of first trimester bleeding with that pregnancy and he was born with a small kidney defect, but he is otherwise a totally healthy kid. I did read somewhere that low levels of protein in the mother's blood can affect the test results and I was totally repulsed by any meat or fish that entire pregnancy (an interesting aside- DS is allergic to fish....)They also say that human error (the technician's skill) can come into play with these results. Either way, it is a scary and stressful wait while you sit around for those amnio results.

I work in special education and had access to lots of good information so I felt OK with raising a Down's child. I have SUCH a soft soft for these children whenever I encounter them now!
Amanda_Reyasmom's Avatar Amanda_Reyasmom 12:25 AM 04-21-2010
I declined the test too.. that's far too much pressure for me! I just wanted to send you some good thoughts. It will be ok.. The odds are still in your favor, but even the worse case senario here will be ok. Even if your baby isn't 100% healthy, it will still be *perfect* You'll be fine I promise Try not to let this consume you (easier said than done I know!) We're all pulling for you and the little one. That is very interesting info about the placenta! (I'll file that away Thanks!)
Kellyh_01's Avatar Kellyh_01 01:16 AM 04-21-2010
Quote:
Originally Posted by RedOakMomma View Post
1 in 15 is still very, VERY in favor of not having a child with down syndrome. If I have my math right, that's a 93% chance of everything being okay. Those are good odds. I think the amnio and ultrasound are good ideas, and will put your mind at ease. In the meantime, focus on that 93%. Those are very good odds, and anyway--the test tends to give you worse odds than you really should have.
Thank you for that perspective. I didn't actually do the math, but you're right. That sounds like decent odds. I feel better now, even with just a few hours having passed. I was not worried about the AFP at all. Honestly, I had not given it a second thought since I walked out of the doctor's office nearly 2 weeks ago. So it really hit me by surprise when I got the phone call. I was really blind-sided by the whole thing. I'm going to hold onto the 93%.
Kellyh_01's Avatar Kellyh_01 01:21 AM 04-21-2010
This is incredibly interesting to me. I am a labor & delivery nurse, and I have never once heard of a possible link between + AFP and Pre-E. I will do some research. It would make sense in our situation, though. This is a Traditional Surrogacy pregnancy, so it's a "new partner," which I know is a risk factor for pre-e. I have 4 kids with my husband and have never had it before, but I will definitely keep a closer watch on it. Thank you for sharing your experience.

Kelly

Quote:
Originally Posted by Bokonon View Post
DDC crashing

With my first, my AFP came back at 1:23. During the level II u/s, 2 soft markers were found (a bright spot on his heart and polydactyly, which isn't typically a Downs' trait, but can be for other trisomies). These doubled the risk to about 1:11. We went ahead with the amnio, which was normal.

But I did end up developing severe preeclampsia. Sometimes the "false positives" are actually indicators of a placental issue, but AFAIK, this correlation is still being researched. So it probably warrants monitoring but not worry.

With my second, the AFP came back at 1:16. There were no soft markers this time, so we declined the amnio, and I just knew it meant I was going to develop pre-e again, and I did.

That said, there are a lot of women who develop pre-e and have normal AFPs. It's certainly not an exact test, but I didn't regret having it, even when waiting for the amnio results in my first pregnancy.

I HTH some. Good luck - I hope your level II goes great and you have an issue-free remainder of the pregnancy!

Bokonon's Avatar Bokonon 02:53 AM 04-21-2010
Quote:
Originally Posted by Kellyh_01 View Post
This is incredibly interesting to me. I am a labor & delivery nurse, and I have never once heard of a possible link between + AFP and Pre-E. I will do some research. It would make sense in our situation, though. This is a Traditional Surrogacy pregnancy, so it's a "new partner," which I know is a risk factor for pre-e. I have 4 kids with my husband and have never had it before, but I will definitely keep a closer watch on it. Thank you for sharing your experience.

Kelly
My OB had never heard of it either, but after I told her I had read about it, she found some sources about it! It was a little disconcerting, LOL!
tribord's Avatar tribord 03:34 AM 04-21-2010
My first thought is that 1:170 or 1:15 are both still really good odds for your baby.

There are also a few other things that pop up in my mind...

What "AFP" did you have? Even the quad screen is notorious for false positives. If you actually just had a AFP I wouldn't put much stock in it.

I'm also wondering why they did an AFP at all? The first trimester screening is so much more accurate than the AFP/triple screen/quad screen. While it can't screen for all the neural-tube defects like an AFP can, the 18-19-20 week u/s will pick up 99% of open neural-tube defects, anyway.

Finally, 1:170 is the DS risk for a 38-year old, so if you are younger than that your first trimester screening should have come back as a "screen positive" (even though 1:170 is a 99.4% chance that everything is fine). Did your doctor discuss those results with you at that time? To me the 1:170 on the 1st trimester screening is what possibly should have raised the question of an amnio, not the 1:15 from the AFP. Just seems weird to me that they didn't say anything about the results of your 1st trimester screen and also had you do an AFP.

Bottom line, though, chances are really, really, good that everything is fine. Hopefully your next u/s will show no markers and you can relax a bit until your amnio results come in.

My 18-wk u/s showed a bright spot in the baby's heart, which is a soft marker for DS. Since my DS results from the 1st trimester screening were good the doctor said he's probably OK and an amnio was "optional" (like, isn't it always!?), but I am going back for another ultrasound in June to look for more signs of DS that don't show up until 3rd trimester. If there are any, I'll have an amnio at that point to be sure. What I tell myself (although I have no medical confirmation if this is true or not) is that if everything else looks OK with the baby and he has made it this long even if he has DS he should be in pretty good shape and will be able to live a long and pretty healthy life.
Kellyh_01's Avatar Kellyh_01 08:46 PM 04-23-2010
I am 36 now. I'll be 37 when the baby's born. When I had the first trimester screening (blood test and nuchal translucency) they told me the "average" risk for Down's for someone my age was 1:186. Our risk was slightly increased at 1:170 due to an increased nuchal fold thickness. These results were discussed with us by the genetic counselor. The combination of the first trimester blood draw, nuchal traslucency scan, AFP quad screen and level II ultrasound in the second trimester is considered the "fully integrated screening" which we chose to do. Supposedly the combination of all of those tests looked at together is supposed to give a more reliable screening than any one of them by itself.

My next appt. has been moved up to April 30th. We'll do the level 2 sono, meet with the genetic counselor, and decide about the amnio, although we are pretty sure we want it done. We are having the baby no matter what the results are, but if it does have Down's then we want to be prepared and educated ahead of time and plan to give birth at the right facility.

Kelly
tribord's Avatar tribord 02:08 AM 04-24-2010
OK, that makes sense to me now. Thank you for explaining. Good luck to you on the 30th.... I'll be thinking of you and looking for your update. I'm firmly with you in the "wanting to know ahead of time" camp!
gradstudentmommy's Avatar gradstudentmommy 12:39 PM 04-24-2010
I agree with the other posters that those odds are still quite good. I too would get the amnio because I was told that the NT ultrasound at 12 weeks is more effective at picking up Down Syndrome than the 20 week one. And those blood tests are notoriously unreliable. My midwife said, "They're not the greatest but they're all we have and they're constantly improving them."

I know a LOT of women who have gotten false positives and their children did not end up having Down Syndrome.

I'm just sorry you're having to go through this though because it must be very stressful.
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