AFP Test Results Positive

81 Replies
Rhonda to Jenny - September 7

Hi Jenny I just went thru the same thing!! I am 35yrs old and mine came back positive for 1/41 chance for trisomy 18 which is a really really bad defect most babies don't make it to birth and if they do manage to be born die with in the first few days of life!! I was soooooo worried and like you I had to wait a week before my level 2 sono and the waiting was pure hell I have never prayed so much in my life but I just had my level 2 done on 9/2 and found out that my baby is prefectly healthy showed no markers what so ever for trisomy 18 and I found out we are having a boy...I did tons of research when I was waiting and what I found out is about 5% of women who take this afp test get a positive but only 1or 2 will actually have a baby with a problem that over 90% of women with a positive result have healthy babies...we even spoke to a genetic couceler and she said that even with me showing 1/41 of trisomy 18 that I had a 97% chance that my baby was normal and healthy!! So try not to worry this afp test is ONLY A SCREENING....Good luck to you and baby I am sure all with be ok just do a google search type in afp test false positive and you will find out lots and that will help make you feel better

 

Mandi - September 8

Here is my story --- MID AUGUST --- I just had a quad screen run. I am 26 and pregnant with my first child. My levels indicated a 1 in 86 chance of having a child with Trisomy 18 (also called Edward's Syndrome). I will not know any more until the 6th of September. This is another big problem with having these tests run....they tell you bad news, and then they expect you to wait 2-3 weeks to provide you with any more information about the pregnancy. Again, at this appointment, they will only be able to give me a__sociated risk factors. They will perform a more detailed ultrasound, and make a few additional measurements. Then, if I choose to do so, they will perform an amniocentesis. I am not sure if they will do it that day, or if I will have to wait again...not matter what the case, you still have to wait 2 weeks for the results of the amnio to come back. I thought that I would have the test run, because I was young (only 26) and my insurance would cover the testing. Most of the time, the risk factors a__sociated with being a younger pregnant mother are lower. Little did I know that my test would come back abnormal. I continue to hope that they have the due date miscalculated, and I'm not as far along as they say I am. But now all I can do is wait and worry. My mind has been settled a bit by reading this website and getting feedback on my own post "Trisomy 18 --- quad screen positive --- HELP", but no amount of words can settle you when it comes down to the life of your unborn child. One thing that I can say in defense of the quad screen is this --- when I went for the test, it said they tested for Down's and neural tube defects, but I had never heard of Trisomy 18 --- now I have educated myself on this disorder as well. They say that a greater being has a reason for everything, and perhaps the greater purpose here was to educate me on this particular chromasomal mispairing. All that being said, I have been doing some reading about this condition, and have found that for a positive trisomy 18, we have to have low protein/hormone levels for ALL of the hormones for which they test. Another reason we could be seing such low values would be a miscalculated due date. I am trying to get an answer to the question "how far off of the due date (in other words, I'm not as far along as they say I am) must I be to have such a high risk factor" in my forum "Trisomy 18 --- quad screen positive --- HELP", but noone seems to have an answer. One website suggested that as little as a few days could significantly throw off these averages....or, perhaps your baby does not produce as many hormones as the other babies. Still, nothing can settle your concerns until you know for sure. Best of luck to all women out there struggling with positive (higher risk) quad screen results. --- EARLY SEPT --- I went for my level II on the 6th. They found two soft markers for Trisomy 18....echogenic bowel and choroid plexus cysts. I went later that same day for genetics counseling and then for an amniocentesis. I told the counselor that I thought my due date had been miscalculated---as I had gone for an ultrasound at 7 weeks and they said my due date was February 7th. At my 13 weeks US, they informed me that my due date was the 30th of January --- mind you I had these US run at different facilities due to moving. Anyway, I asked the counselor if it was possible to recalculate my risk at this 1 week later due date, she did, and my risk went from 1/86 to 1/224. Coincidentally this placed me in the SCREEN NEGATIVE zone. I had called my doctor after the quad screen results (3 weeks ago), and had asked them to do the same. She told me she could not do this for me, and I would have to wait for my level II. Needless to say I will have some complaining to do at my next OBGYN visit. I mean this took the counselor all of 3 minutes to call the blood service company and ask them for a recalculation. I would still have gone through with the level II and possibly the follow up amnio, but it sure would have made me feel alot better if I would have known this three weeks ago. I would have also had more time to consider/reconsider the amnio. I hope to have the results of this amnio back in 8-10 days, and they will call as soon as the results become available. Hopefully, I will have rea__surance that all is OK by the end of next week. I did get a bit of good news....IT'S A BOY!!!! But I can't be too sure until after the amnio results come back. For those of you who don't know, the incidence of Trisomy 18 is 3:1(female:male). So, finding out I was carrying a boy made me feel a little bit better.

 

stephanie - September 8

I'm not really sure about that, i would ask a couple of doctors to be sure. I've just took an ept test and it read positive and i dont know if i want to trust it or not because a few weeks ago i took 2 pregnancy tests and they were negitave. can any body help me or give me an idea?

 

to stephanie - September 8

hon we are not talking about a pregnancy test this is a screening done after you already found out your pregnant your doc usually had it done around your 15th week hope that clears things up a bit for ya

 

Faith - September 8

I had a false positive AFP and Thanks God my amniocentesis came back normal. If I knew I would have had the test so I didn't have to worry so much. The test is useless since it give false positives. My sister didn't get it. The amiocentesis is the most accurate test and the risk is 1 in 200 of miscarriage. Good luck to everyone.

 

Jessica - September 8

I had the amnio done today. We learned from the doctor that there is a 'preliminary report' called 'FISH' that can provide a preliminary result in 3 days, but insurance won't cover it. The clinic I went to charge me $300 for FISH. We decided to go for it. I did ask the doctor how accurate is FISH and she said it's pretty much as accurate as the final result of the amnio toward Downs and Trisomy 18. But for overall picture of all chromosomes, only the final amnio test result can tell. Since I am at risk of having a Downs baby, we are very happy to learn about FISH. For those who are eager to know the result(I wonder who isn''t), FISH might be something you would like to check with your doctor. Good luck to all of you. Be hopeful!!

 

Jenny - September 9

Rhonda thanks so much for the info. I feel better, although Monday could not come soon enough! I appreciate everyone's helpful insights, this has been a difficult couple of weeks. I'll let you know what the u/s shows on Monday, wish me luck!

 

Jenny - September 13

I had my level 2 ultrasound yesterday, and the doctor said that everything looked good...It's a girl by the way...we went ahead and had the amnio anyway just to be sure. We now play the waiting game...10 to 14 days! I know everything will be ok though. My doctor didn't tel me before, but I guess I was actually at risk of 1:90 for Down Syndrome. I know that's only 1% but when it is usually 1:700, it seems like a lot.

 

Rhonda to Jenny - September 14

That is great news for you!! I am very happy and in most cases they are able to give you a good idea with the level 2...so don't worry about the amino results I am sure they will turn out great as well!! I choose not to have the amino due to I had a mc at the begining of this year and I just did not want to take that chance but good luck and keep me posted!!

 

samantha - September 18

Hi is the level II u/s the anomaly scan? My doctor hasnt mentioned this as an option only the amnio which we dont want. At what stage do you have the Level II U/S is it private? Our APF was 1:254 and im only 25 - i have my 21 week scan tomorrow can they see any markers for downs syndrome then?

 

Melissa - September 18

I too have a positive result for downs on my AFP test. I am 35 and this is my first pregnancy. My amnio is scheduled for 4 days away. I would just like to say HOW MUCH better I feel reading this forum and just not knowing I am all alone with this. It seems that the largest majority of everyone has been freaked out for nothing and I hope I will be as well. My girlfriend also had a "false-pos" result and didnt even have to have the amnio done after the U/S II showed her baby was just fine. I must say I have had alot of sleepless nights over this and have realized that there are some things in life completely out of our control. It has made me reasess what makes a loving parent and how precious and miraculous the gift of life truelly is. I wish you all the very best, and know that God does not burden us with anything we can not handle.

 

Rhonda - September 18

This test is just a screening to let you know if you could be at a higher risk of having a baby with problems....and further tests are needed I would recomend having a level 2 sono before having an amino done there is not a risk of mc with a level 2 but with an amino you have a risk of infection and mc...I chose only the level 2 sono cause if they can see everything that should be able to give you an answer with out the risk...good luck

 

Jenny - September 19

I would also have the level 2 before doing the amnio. I had both done and I can say that I was more worried about the complications from the amnio than what the results would be. If the level 2 shows any soft markers for Down's, you can make the decision at that point to have the amnio or not. I am still waiting for the results of my amnio and it has been the longest 7 days of my life! Hopefully I will hear good news sometime this week. Good Luck to you

 

samantha - September 22

Hi Just wanted to tell everyone i had my level II U/S pn monday and they found no soft markers and the nuchal fold was normal - we were advised not to have an amnio as everything is pointing in the right direction and we agree going to try and enjoy the rest of my pregnancy - good luck to you all.

 

Mari - September 23

Hi all! Well, I seem to be one more joining the "worry group". My doctor called me yesterday to tell me that my AFP results came back a but high. At the moment, I was so shocked that I couldn't ask him many questions, and in a split of second, I realized I had been transferred to schedule an ultrasound for next week. However, I don't know anything else or what kind of Ultrasound they'll perform. From what I read in this board, a level 2 is the way to go. I am 18 weeks pregnant, and 31, and OF COURSE, worried. People joke I'll have twins, but I am going more with what I am reading here. The false positives are common. I am waiting for my doctor to call back. I feel tortured.

 

Jessica - September 23

Hi, 9/2 - my doctor told me that i'm at risk of having a Downs baby. At my age 34, normal probability is 1 in 400. I'm 1 in 32. 9/8 - I had an one-hour genetic counseling, a level II ultrasound and the amnio. They found no markers from ultrasound. The amnio went smoothly. Much faster and less pain/discomfort than I thought. We asked for 'FISH' that day too so we can get the preliminary result in 3 days. 9/12 - Genetic counseling informed me that FISH report turned out to be fine. #18 and #21 chromosomes are normal. 9/19 - Genetic counseling called again. The final report turned out to be normal. All 42 chromosomes are normal. Nothing more, nothing less. In addition, the 2 protein levels that used to be abnormal in my AFP result turned out to be normal after they tested the amniotic fluid. Like you all, these messages gave me a lot of strength to carry on, during those days when there was no answers. I know exactly how you feel. Please be faithful. Look at my example, not too many women has hig probability like mine(1 in 32); yet, my baby is normal. Have faith, especially have faith in your unborn child.

 

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