AFP Testing

Updated on September 23, 2007
J. asks from Little River, SC
19 answers

I am about 16 wks along in my 3rd pregnancy. I received news that my AFP test results were abnormal - 1/126 for Down Syndrome. My doctor recommends a level 2 ultrasound and my husband and I have elected to have an amnio performed (10 - 14 days for the amnio results). As you can imagine we are extremely stressed and worried, as our two other pregnancies were essentially complication free. I have researched AFP testing at length the past 24 hours and I have come to the conclusion that there are many false positives and a majority of the time (95%) the babies are healthy and normal, whether you have high or low abnormal AFP results. I would appreciate any of you sharing your experiences with AFP testing, results, and final outcome. Thanks, as this will be the longest 2-3 weeks for our family!

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So What Happened?

We had the level 2 ultrasound and NO markers were identified. We had an amnio the same day without complications. The results took about 10 days and confirmed we were having a healthy baby girl. Brianna Nicole was born healthy at 38 wks this past July 2007 with an induction due to my gestational diabetes. Thanks to everyone for their advice, kind words, and willingness to share personal experiences. J.

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S.T.

answers from Charlotte on

Hi,
I had the same issue with my second pregnancy,(nouw my son is 3),and I was so scared ! I had a ultrasound level 2 and it was fine,but was told that it did not mean anything,so i chose to do the amnio which is scrary and stressfull because of the long wait for the result,AND everything was fine !My son is healthy and beautiful. It`s very common for this type of results,and in general everything is fine. So be positive and you baby is going to be fine.Good luck !!

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S.J.

answers from Charlotte on

Hi J.,

I don't even remember if I had any AFP testing done. With my Level2 Ultrasound with my older son, they said there "might" be a marker for downs -- something about a short joint on one of his hands. We ere going to have the amnio done anyway, but everything was fine. Try to relax and remember, they try to prepare you for the worst, just in case.

Congratulations and good luck!!

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V.C.

answers from Charleston on

Hello J.. First I want to tell you do not strss to much because it is not good for the baby. Second I know what you are going through. I took the AFP test and forgot all about it. A couple of days later a nurse called me and told me my results were abnormal. I was so scared and nervous. She started talking about having a amnio done and a level two ultrasound. I didnt do the amnio because it scared me to much but I did have the ultrasound. Everything turned out normal. Later on in the pregnancy when you post to go to the doctor once a week i was going twice a week so they could monitor the baby. I now have a very healthy daughter. If you want to talk somemore you can email me at ____@____.com yeah this was my first child so talking about being scare. I know the test is suppose to help perents but i think it produces more unnessary worry then good.

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S.C.

answers from Greenville on

I had the same test and the level 2 ultra sound. They can tell alot by the ultra sound. More cases then not the AFP test positive is wrong. We elected to do the level 2 and see what they said before we made a decision on the amnio since there are risks associated with the amnio. The ultra sound said everything was fine and there were so signs (which there are 3 or 4 that they look for) of downs. I would recommend that you do the ultra sound and wait on the amnio. In most cases they can do the amnio that day after the ultra sound if you choose to go that way.

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A.C.

answers from Norfolk on

With my second child, I was told there was a 1/11 risk that the baby had trisomy 18, which if she had it meant there was no way she would live. She is now a healthy 3-year-old. So many moms go through this worry that some people opt not to have these tests at all, since it is extremely stressful and most times the baby is 100% OK. There are "false positives" in the testing, especially if they have your due date off. But even without factoring that in, the tests aren't predictors, just analyzers of risk. To cover themselves, doctors have to tell you if there is risk. Realize that 1/126 means that you have a better than 99% chance that everything is fine! Doctors have to tell you if there is a greater than average risk of some kind of problem, but doesn't that mean that 49% of women will be told their numbers show greater than average risk? The amnio is the way to be 100% sure, but until then or if you decide just to do the ultrasound, feel positive and know that the odds are definitely with you that you have a completely healthy baby. Good luck!

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A.C.

answers from Dayton on

I personally chose not to have the AFP done during my pregnancy because of the false positives and the stress it could cause me and my husband. However, a friend of mine had it done and received a positive result. She declined the amnio because she was concerned about the risk to the baby. Needless to say, she was worried her entire pregnancy. In the end, her daughter was born completely healthy. No birth defects or complications. She'd had a false positive AFP.

I wish you the best of luck with your testing. I will pray that your baby is pefectly healthy.

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E.C.

answers from Charlotte on

When I was 35 I got pregnant with my third son. They told me that my test results showed an abnormality and my child could have Downs. They recommended I have an Amnio, if I wanted to know. My husband and I talk about it for a few days and decided to have it. We knew all the risks but we wanted to know. Not that we would love the baby any less but to prepare us just in case. Turned out everything was good and we had a healthy baby boy. It isn't easy making decisions like that but sometimes they are worth it. The doctor told me mine was an age factor and I shouldn't worry, he was right.

Goodluck and I hope things are going well!!

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L.H.

answers from Greenville on

I chose not to have the test done after the doctor explained the high cheance of a false positive. I had a close friend (who was also pregnant) had the test done and it came back positive. They decided not to get the ultrasound or amnio as they did not feel they could decide not to have the baby. I am happy to say their daughter turned out perfect as did my son. I think it is good that you are doing the extra testing to determine if your AFP test is correct or not. I hope everything turns out well.

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J.M.

answers from Charlotte on

My mother with her last pregnancy had this done because of her being in her fortie's. The results did take a while to come back but the results were absolutely right, you'll know w/out a doubt the sex of the baby, And if the results come back likely for down's it's just a decision that you and your husband will have to make whether or not you can handle a down's baby. I don't have enough experience to say if they can determine that the baby will have down's before birth or not. I hope everything will be ok, and you and your family are in my prayers.

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S.O.

answers from Charlotte on

I also had a similar scare with this pregnancy. After my ultrasound, I was told I would need a level 2, because there was an abnormal spot in the heart that could mean Downs. I had to get all the blood work done, then my doctor told me that those tests are so inaccurate most the time, not to worry. The level 2 ultrasound showed that there was only a 1% chance, which is no more than any baby has. He encouraged me not to get the amnio done, as there is a higher chance of miscarriage, and I should ONLY have it done if the level 2 ultrasound still showed signs of a problem.
I still have 5 more weeks of pregnancy, but every doctor has told me I have no reason to be concerned. They measured her head and brain and everything, and it's all normal.
Hope all goes well!

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L.M.

answers from Charleston on

First, congratulations on your pregnancy. Second, try to relax (I know easier said than done). I don't have any first hand experience in this but I do have a very good friend who had a very similar situation. She was told that her child would have down syndrome - she had the amnio done and that confirmed it. She had a healthy baby boy with no health complications (slight learning disability that they think may be related but who knows). I have heard of many false positives on this test and with the amnio as well. Hopefully the same will be true for you. Good luck!

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J.B.

answers from Columbia on

You are absolutely correct that most AFP tests are false positives. We had the same situation with our baby girl. We did the ultra sound and the amnio and everything was fine. I'm not sure how old you are but I was turning 35 3 days before my due date - so my age was a big factor. Seems like if you're 34 or older - you get flagged as higher risk. As for the amnio - we got it done because I just didn't want to worry about it through the end of my pregnancy. Plus the dr I went to was excellent. Pulished results (from several years back) say that the chance of miscarriage is 1 in 200. His stats were over 1 in 1000. So, if it will make you feel better and you are comfortable with your doc - go for it.

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N.N.

answers from Norfolk on

J....My name is N. and my son is now 5 yrs old... when I was preg. w/ him I was only 19 and when I had the AFP test my results came back 1/100 chances for downs... you said it when you said the longest 3 weeks of your life! I was a complete mess but you are right they have to do the AFP test at the Exact time of 16 wks or else the results are way off. When the results came back he was fine and i found out he was a boy so that was for sure one of the happiest days of my life even though regardless what the results were I would have loved him the same. I was really scared because I had heard that dr's usually don't recommand an amino test (spelling not so great) and mine did... and he told me the chances according to the test were greater then a 40 yr old women. well I just wanted to let you know I know what you are going through and can completely understand the feelings going through your head right now.

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D.

answers from Charlotte on

So sorry to hear about your AFP test. I was in the same boat but mine did not turn out to be false. My little girl had spina bifida. The AFP showed it as did the level 2 ultra sound. It wss so pronounced at 17 weeks that we chose to terminate the pregnancy after much prayer and many tears. We viewed it as a quality of life issue for her. When all was done, the head nurse told us that more than likely she would not have lived very long because of her head malformation which did show up on the level 2 as well. Everything we have experienced since then has reassured us that we made the right decision for our family and for her. I will pray for you and your family. No one should ever have to experience the pain we did. I must say we do have one healthy three year that we love and cherish dearly.....

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S.T.

answers from Greensboro on

Hi J., My heart goes out to you. I rec.vd the same info about my afp but high for spinabifida. We had our ultrasound at wake fetal center, 2 doctors viewed the u-sound and both agreed the baby appeared to be perfectly fine! They said I could choose to have the amnio if I wanted it but they didn't see a need for it. They said this ultrasound was in itself 99% effective in determining a problem. Wait until your u-sound before you decide. I knew if there were ANY questions I would have the amnio, but these Drs specialize in ultrasounds so I am feeling good about my decision. Good Luck and you are right more False positives than actual positives!

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S.B.

answers from Charlotte on

I just wanted to say that I know a couple of women who have had the same scare and then it be nothing. You just need to trust that God will handle it and let it be. The doctors tell you these things and get you scared and then you are stressed the rest of the pregnancy, which is not good for the baby. Sometimes it is right, but from my experience with my friends, most of the time it is wrong. My prayers will be with you and I hope all is well.

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D.M.

answers from Myrtle Beach on

Hi J.. We also had an abnormal result on the AFV test. We were told the same statistic of 1/126 for Downs Syndrome. We did the stage two ultrasound, but not the amnio as it can lead to a miscarriage. Our ultrasound reading was good although they could make no guarantees. However, with the ultrasound readings, they changed our statistics for Downs Syndrome from 1/126 to 1/450. We delivered a perfectly healthy baby girl on September 19, 2006. I am not going to tell you not to worry as I learned with my experience that it is impossible. We have since learned that the abnormal readings on the AFV is VERY high.

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B.M.

answers from Spartanburg on

HI J., I had this same issue with my second pregnancy. I was nervous and stressed (neither of which are good for the baby). We did opt for the stage 2 ultra sound (which came back fine), but did not want to have the amnio, as it had a greater chance of problems (miscarriage). My husband and I decided that we would leave it in God's hands. Even if we had the test and it showed abnormalities, we were still going to love this child! It would not have changed our decision. My son was born PERFECTLY healthy! I think the AFP testing only causes undo stress. Just relax and try not to worry about it.

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M.G.

answers from Myrtle Beach on

I had those tests and they showed nothing abnormal but went on to have a baby boy 10 weeks early with Down Syndrome. Those tests are incredibly inaccurate and usually just provoke unnecessary fear into the mom. Unless for some reason you would choose not to continue a pregnancy because of a defect, they are pointless and I wish I had never had one! I would never go on to have an amnio because the risk of miscarriage just aren't worth finding out my baby might have a defect that cannot be dealt with until birth anyways. Heart problems can be seen on ultrasounds, so an amnio isn't really necessary. It is sad, because in the case of DS, doctors still push you to end the pregnancy. Nationwide, the numbers are like in the 80% that women who have DS diagnosed in utero, don't continue the pregnancy.....and that can be directly contributed to poor education of the disorder and doctors not pushing for full term delivery. So just think, 80% don't continue the pregnancy and those tests are wrong A LOT!!!! How many babies didn't make because of that?

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