September 13, 2008

Question: AFP Screen

Hey. I have a question. For those of you who during pregnancy got the 16-week AFP screen (or the Triple Screen, or the Quad Screen, or the MSAFP) (it's the one where they draw blood and then tell you your personal odds for a baby with Down Syndrome, spina bifida, and a couple of other things), would you please comment if you got a Scary Result and then things turned out Perfectly Fine? My sister-in-law got a Scary Result, and even though we can all see statistically that things are likely to be Perfectly Fine, it would be bolstering to hear a lot of stories along the lines of, "OMG, I got a Scary Result and I worried for my ENTIRE pregnancy, and then the baby was TOTALLY FINE!"


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52 comments:

SarahO said...

I have a friend who just had her second baby who had SCARY results from her quad screen. They ended up doing amniocentisis and everything turned out fine. He's a happy and healthy baby boy!

MY ob/gyn told me when I was pregnant with my daughter that false positives were quite possible, but the screening was a good idea to help you decide if further screening was necessary.

Joanne said...

This isn't exactly the same thing as it was not my quad screen, but we had scary results on our toxoplasmosis screen (the thing you get from changing kitty litter boxes). However, it wound up being a false positive and my son is a perfectly healthy little guy.

Anonymous said...

That test is notoriously unreliable...I actually had a false negative and my son was born with Down Syndrome. Both of my best friends (ages 25-26 at the time, so low risk based on age) had false positive tests and everything was just fine with both their babies. Worrisome, but most probably nothing!

Gwendolyn said...

Waving my hand in the air over here! With my last baby, I was told he had a 1 in 36 chance of having Down Syndrome. They were concerned enough to do Level 2 ultrasounds every two weeks for the entire rest of the pregnancy..and every week at the end. (I declined the amnio.) After all of that, the doctor that delivered Owen was the one that I had only seen twice...and when he pulled the baby out, and I asked anxiously about Down Syndrome he looked at me blankly and said "Is he SUPPOSED to have it?" Sigh. Needless to say, the baby was fine. If I were going to have any more, I would refuse the test.

Also, my sister-in-law had the exact same situation, and her precious little boy was fine too.

Mommy Daisy said...

I've had two friends who has false positives on these tests. I refused to take it when I was pregnant. Both ladies I know have PERFECTLY healthy babies/kids now. They each got retested and found that there was nothing to be concerned about.

Someone Being Me said...

I chose not to have the test because I had a good friend and a family member who both got bad results that turned out to be nothing. Both had to go through amnios for nothing. I chose to focus on the ultrasounds.

A Buns Life said...

I had a 1 in 16 chance that my son was going to have Downs (I was 27 at the time) so I opted to have the amnio done, so that we could prepare ahead of time (get the right Dr.s etc) and everything turned out fine. Getting the amnio was nerve wracking, but well worth the peace of mind.

Sending peaceful thoughts to your SIL.

SeaBird said...

I didn't actually have the amnio, but basically from the first ultrasound at 10 weeks the doctors told us that there was probably something "wrong" with one of our twin boys... going as far as suggesting a "fetal reduction" to decrease the stress on the other twin and me. They had a special team of doctors set up for him at their birth and.... he is perfectly healthy! (but wait, is whining considered a genetic abnormality??)

Jane said...

My sister got a scary result and so had an amnio (her choice) and the result was perfectly fine-my gorgeous healthy nephew turns 1 in 2 weeks!

Your sister in law in in my thoughts--I know she must be so scared.

Sarah said...

I remember when my doctor offered the screening test to me. I turned it down and she said that it was probably a good idea not to take it. She said the results aren't that reliable and that you're likely to ruin the rest of your pregnancy worrying about nothing. Her sister took the test and got Scary Results, spent the rest of her pregnancy worrying and then the baby was PERFECTLY FINE.

It makes me wonder why they bother offering the test at all.

Anna said...

oh! this post made me cry. thanks, all. it really is making me feel better reading these.

Linda said...

Hey! My SIL got a scary result! They did an amnio and it was normal. Now my nephew is 13 and all shaggy with the surfer hair that's in right now. He gives my kids piggy-back rides. What a great kid.

Beth Fish said...

I had a Very Scary Result, and then a Very Scary Ultrasound (declined the amnio), and the only thing wrong with the baby is that she is now three and never, no never, not ever stops talking.

nanann said...

Had a very scary result -- instead of Down's, they actually feared spina bifida. (I swear I took my prenatals!)

Went to The Ultrasound Expert in Houston and he declared that she had a perfect spine so we didn't bother with amnio. She is 3 now and does have just the cutest and most perfect spine I have every seen!

Enniferjay said...

I had a 1:36 chance of Down's, my sister had 1:9. My three friends in the nursing group all had Scary Results and all of our babies came out perfectly normal. For the second baby, I went with the First Trimester Nuchal Fold Ultrasound Screening. We had to pay for it, but they could see it immediately and tell me it was fine. We did the ultrasound and I had all of these horrible nightmares leading up to it and all for nothing. Good luck to your sister-in-law. I think she's about to join our pissed off at the triple screen false positive club.

Mommy Brain said...

My doctor called to tell us that our quad screen had "abnormalities" at a time when we were 3000 miles away on vacation. It turns out we had a 1 in 28 chance of Down's Syndrome. Once we did the math this really just means a 3% chance which feels a lot less scary. Why they don't put it that way is beyond me. But at the time we heard we were without access to Google so I had no idea about all these false positives that people experience. Grrrr!

We decided to decline amniocentesis because no matter the results of the test we would continue the pregnancy. Instead, we agreed that looking for the markers of Downs at the ultrasound would be enough. Of course, we had a three week wait before the ultrasound.

At the ultrasound but they found no markers of Downs. Instead the found twins which is possibly scarier but also good. :-) Even with twins my numbers only adjusted to 1 in 39 chance of Down's. I gave birth to two perfectly healthy babies. My only complication was, you know, having two babies!

I actually tell people that unless they would terminate the pregnancy if they found birth defects then they should decline these tests because the false positives are so stressful.

Good luck!

Paula said...

A thousand years ago, when I was pregnant with my younger child (ok, only eighteen years ago), we were told she had Downs syndrome and/or spina bifida and were advised to have an amnio.

She was, and is, perfect.

jen said...

I had a "quad screen" with my first two kids that was done at 16 weeks, fine results. I had the blood test/l2 ultrasound/genetic counseling "nucal translucency screening" at 13weeks with my third and got good results.

But I'm just saying that because I'm not sure which test you got, and at 16 weeks too. Both of these tests I'm told are very time-sensitive. If you're off one week with your dates the results could be off.

thatgirlfromcolorado said...

Scary Result from Triple Screen (elevated risk for Downs). Child was Perfectly Fine. He's 6 now. :)

Omaha Mama said...

Didn't do the screening with either pregnancy.

Elizabeth said...

I didn't get a scary result, but a good friend did, and she just had a perfect baby girl last month. She did do the amnio after the scary result of the AFP to make sure.

mamma knows said...

I didn't even take the test with my third (my doctor recommended this, I would have failed because of my age 36). Her reasoning was this... #1 I would fail, which in turn would cause worry and stress...#2 would I do anything differenty if they detected something? No, I would have had the baby regardless. She also informed me that Downs has certain characteristics which show on a sonogram such as a thicker neck, shorter legs. She reassured me that if she saw any "signs" she would refer me to a specialist right away. Thank the lord we had a healthy baby girl. I do know someone who went through all of the scare and her baby was perfect also.

Misty said...

After reading up on this test and its tendency to frequently be incorrect, I declined it for both of my pregnancies.

But I did do a lot of research before I declined it. And the test just didn't seem very reliable. Like other folks, I banked on the ultrasound telling me if something was wrong.

shannon said...

I never had it the screening done personally. But I know some people who have five kids and for several of the pregnancies they were told that the fetuses had VERY AWFUL CONDITIONS and should be aborted. They did not feel this was an option for them and continued to full term with all of them and they have 5 PERFECTLY NORMAL and delightful kids. And they are so very thankful they didn't listen to the doctors. You just can't know for sure until you have the infant in your arms. Even then, you can't know what the future holds! Best of luck and much encouragement to your SIL!

Amanda said...

I had a Scary Result - a 1/77 chance for Down Syndrome - and baby was Perfectly Fine. But Lord, did I stress out for the rest of the pregnancy. Had the level 2 ultrasound but no amnio, because we would have kept the baby either way. But what stress. Good luck to your sister in law!

Mayberry said...

Me-- with my 1st baby, when I was 31. Scary result, and then we had an amnio, which showed an A-OK baby. And she is (although no longer a baby).

shannon said...

my scary result was Trisomy 18, did the ultra sound and was a false positive. my OB even said she didnt even have test because of the chances.

Anonymous said...

i didn't take it for my first since i did ivf and worked so hard to get to this baby that it didn't matter what any results were. wasn't going to take it for my second (same reason) but worked w/a woman who was pregnant w/her first who researched everything and kind of talked me into it, sort of. well i wasn't going to do it but at the last minute changed my mind. came back positive for 1 in 100 chance of down syndrome, dr said would advise against amino if i wasn't going to terminate pregnancy and would just monitor w/extra ultra sounds. it turned out to be false positive and 7 years later i have the cutest, smartest, typical second grader, but that's just my opinion. : )

jeb

Mika said...

I had borderline results (borderline meaning the point where having an amnio starts to make sense). Did not have an amnio right away, but "soft markers" for Down's syndrome during the standard ultrasound at 18 weeks caused me to decide to have one in the end. Soft markers meaning an enlarged kidney in my baby boy worsened the original odds to about 1 in 100. The amnio showed everything was fine, perfect and hunky dory.

Farrell said...

My friend summar had a scary result and then did a amniocentisis and everything is fine. Her boy is healthy and happy and smart and growing.

sarah said...

I was told I had a 1/200 chance that the baby had Spina Bifida, they did an ultrasound later and she is fine - They also found a pool of blood in the placenta and said that may have affected the results of the test.

elizasmom said...

I don't think I know anyone who DIDN"T have a false positive. I'm serious! One of my friends was 1 in 14 for Down's, I and a friend were 1 in 64, and I know a bunch of people who tested at 1 in 100 or greater chance of Down's. My own OBGYN was 1 in 10. NO ONE's kid had Down's. Those tests are a crock and I think they are irresponsible medicine. I can't believe any OBs are still doing them. Most places have switched to Nuchal fold screening instead.

Your SIL should still get whatever other screening she needs to put her mind at rest, but she has a lot of company.

Personally, I think this test is popular because it means people are going to pay a bunch of extra tests. Yes, I'm cynical, but I can't see another reason for a procedure this ridiculous.

Hmmm. I'm being rather strident. Perhaps I have some lingering ANGER over how this stupid test's false positive result ruined Christmas for me and mine that year? Naaaaah.

Kelly said...

I had a scary result -- my daughter came back with risk for neural tube defects. It was SO SCARY. Also #1 thing NOT to do is to Google whatever it is that came back as elevated risk. We met with a genetics counselor who was very kind and let me cry all over her and was honest yet fair/not alarmist about the risks. In the end we did nothing (except anxiously worry the ENTIRE FRIGGING TIME) and my daughter is as healthy as healthy can be. In fact I often joke with my husband that her neural tubes are exceptional because clearly she is the most brilliant child to ever walk the planet.

Best of luck to your sister in law!

Sue said...

I know so many people who have had false positives (literally dozens) and none of them had a baby with Down Syndrome. I know 2 people who do have babies with DS and all their tests (not amnios) came back normal. So there you go. (((HUGS)))

Megan said...

Yep! I have a friend who just 4 weeks ago delivered a beautiful baby girl, her first child. The mom is 33. She was told she had a 1:36 chance of downs, but she declined the amnio and everything is perfect! I've heard just horrible reliability stats for this test.

Best of luck!

Monique said...

My SIL (45 yrs old at the time)had the triple screen 19 years ago and was high risk for Downs and my nephew is Downs. I had the triple screen 15 years ago with oldest daughter, no problems. Second daughter 10 years ago came back high risk for Downs. I opted for the ammnio because I do much better knowing than not knowing, and she's fine. Pregnant now at 44 with our son. I had the quad screen and Downs is not a problem (my age risk is 1 in 32, my results were 1 in 709), but Edwards Syndrome (Trisomy 18, like Downs but a different chromosome) was 1 in 53 (my age is 1 in 3000, or something like that). Edwards presents with many physical problems that can be seen on ultrasound, and two ultrasounds later (one just about the Edwards and one just to ease my mind) he seems to be perfectly fine, not one marker was found for Edwards or Downs. He's due on or before November 7, so I'll let you know. I think he's just fine.

Joanne said...

I declined the test every time it was offered to me but part of the reason I did was because my doctor told me she didn't do it. I asked if it was because of false positives and she said it's not even really a positive or negative. Age and other factors figure into it before you even get the test. I know SO many women that have gotten a 'scary' result and it's not been an issue.

Anonymous said...

Is your sister having an amnio? That's the only way to know for sure.

el-e-e said...

Yes, that happened to me. They called me in ASAP for a follow-up (making me that much more nervous) and were all casual about saying, "Oh, yeah, your dates are off by a week. You should be fine."

JAY-ZUS. Can't they just tell you they want to re-check your dates? Do they have to throw out the Downs possibility first thing, if this test is "notoriously" faulty?

Our baby is perfectly perfectly fine.

Little-Bit said...

My sister had A Scary Test Result that prompted a trip to the Bigger Hospital in a Bigger Town. My nephew is perfectly fine, except that rotten attitude he got from his father :)

Anonymous said...

Oh yeah. Bad quad screen results, completely healthy baby. Best of luck.

Brooke said...

Hi, little late here, but I got the AFP with my now 5 month old son. We got the results the same day we met with our genetic counselor about the problem with our ultrasound. Normally our AFP would have been unremarkable, but added to the enlarged renal pelvis my son had at 18 weeks, well, it's a soft marker for Down Syndrome. Yeah, I about lost my head and we went ahead and did an amnio because we did need to know. Anyway, my son is fine and maybe she should wait for her U/S before getting more nervous. I totally understand her anxiety, though.

LoriD said...

I had a 1:49 result with my third child. We opted for the Level 2 ultrasound to look for possible markers (heart defects, neck thickness). Everything looked fine, so we did a little Downs research, then put it out of our minds for the rest of the pregnancy. She's absolutely fine.

Anonymous said...

My results were so bad my doctor called me in from work to do it again and then when those results came back even worse he asked me if I was smoking, god no! We passed on the amnio because my risk for a miscarriage was greater than for downs. So make sure you do the math. And my son is now a healthy 3-year-old but man was I worried the ENTIRE pregnancy. Remember it's NOT a diagnostic it just gives you your chances and is notoriously inaccurate as everyone else has said. I live in Switzerland and they don't even do that test anymore. Good luck, Kim

juliloquy said...

I had a scary quad screen result and opted for amnio, which said our daughter (Joni) had a normal chromosome set.

She was tiny at birth, however (5lb 9oz at 40 wks), and had a high red blood cell count, so they think something may have been wrong with the placenta. They actually used the words "hostile prenatal environment"! Anyway, she's almost a year old now and all is well.

Hope your friend's OK. The wait for the results is excruciating.

Angela said...

Based on my quad screen, my odds of went from 1:thousands to 1:32. I went ahead and had an amnio, and everything was fine. He is going to turn 2 on Saturday. It was a very hard time in between the worry and the knowing.

Anonymous said...

My SIL got very scary (high number scary) results for all 3 of her first 3 kids, and all were false positives. With her 4th, she said forget it! no test! and had another healthy baby. All 4 are bright happy kids. They hog the cupcakes when they KNOW I NEEDS THE CHOCOLATES, but otherwise they're good kids.
Corinne

Emah S said...

I am in this situation right now and I can't tell you all how comforting it is to hear about people who have gone on to have healthy 'normal' babies! I'm 37 and my numbers came back 1:211, doc also mentioned that she recommends amnio, and the sooner the better in case I decide "to terminate." **GULP** I don't plan to abort, and am NOT going to have the amnio. We have an appt. next Thurs. night to meet with a genetic counselor and will ask for another u/s. I have had the nuchal test, and an u/s the week before I took the AFP where everything was fine, but still I'M SO FREAKED OUT.

again, it's good to hear everyone's stories.........I know at this point I've read hundreds online and I just can't get enough. It pisses me off too that doctors around the world are still giving this stupid test! ugh.

thanks for listening......

Anonymous said...

I'm in this situation right now and it's making me sick to my stomach!(Not to mention my anger towards the medical sysytem).

I'm 38 and my triple screening test came back 1/63. My doctor and genetisist both, I feel, pressured me into this. I wish I had read all about the Triple screening more before I chose to take the test. I chose to get amnio next week b/c I simply can't function.


Like you all said EVERYONE I've spoken to thinks this type of testing is wrong and either has been through the same thing or knows many women who've had false positives.My friend who's a long time nurse said anyone who's over 35 will pretty much get a positve result becasue age is #1 factor.

I belive everything is fine with my baby as I have 98.4% of having a healthy baby...it would be helpful if the medical profession could explain things to me in those terms insted of saying "your tests are positive for DS"!!!

Can you tell I'm mad and upset?

Thanks for all your comments as they really help me through. I think I've been reading this everyday since I recived "the phonecall".

Anonymous said...

hi im 36 and pregnat with my 5th child all my screening results came back low with all my boys but this time they are saying its a 1 in 2 chance, i have to go hospital tomorrow to discuss further and have the amnio, there and then if i want, i think it would be wise for me to have it, but have been told could take up to 2 weeks for the results to come back any one else had them odds

Anonymous said...

I'm 28 and I just had an amnio today. Results were 1:49 for DS, U/S was fine, but somehow something the doctor said scared me and i decided to have one. Well, it happens that i couldnt stop crying afterwards -i wasn't in pain, just very emotional, something felt wrong-, and i think that next time i will skip the AFP test all along. After today, I only recommended it if you are willing to terminate pregnancy. I wasn't.

Muaylek (Chinese girl) said...

I'm 32 and i just had an amnio last Saturday since my AFP result was 1:86 for Downs. The wait for the results is so stressful. Many researches show that AFP can detect only 60 out of 100 DS and only 5 out of 100 positive results turn to DS.