Positive AFP test for Downs - scared

[bethrox]

I was informed yesterday that my AFP test came out positive for the possibility of downs. I was devastated. They told me because of my age (38) alone, my risk of downs was 1 in 130, but add the blood test results to my age and the risks are 1 in 123. I am having a level 3 u/s Monday, but can't even sleep because I am so worried. Anyone know anything about this?

Beth
twins
17w1d

[andiolson]

Hi-

I just wanted to say that I know many people who have tested positive, and who even had an ultrasound which showed the "red flags" (enlarged femur, etc.) who went on to have amnios which all showed OK. I know it must seem very scary, but just know that those tests are very imperfect. Try to relax this weekend.

Andrea

[JanetOH]

I noticed in your sig. that you are pregnant with twins. AFP results when you are pregnant with multiples can be produced a higher rate of false positives. The accuracy of the numbers have not been translated for multiple pregnancies. A lot of people pregnant with multis forgoe the test. I know with your age you were probably encouraged to do it. You risk factor didn't change very much either.

I know it is hard not to worry... try to stay calm. Getting worked up over it is not helping the babies.

I am not sure if amnio was mentioned, but that will confirm it one way or the other.

-Janet

[m(or)]

I had a positive AFP with my singleton. The amnio let us know everything was okay. My sister had the same situation. My sister was frantic. I was fortunate because my afp results came back 20 minutes after the amnio results.
Our peri would not even give us the AFP with our twins because of the high number of false positives. Because your numbers barely increased your risk over maternal age risks, I think everything is fine. The ultra sound will tell them much more, and after that you can decide if you want to amnio, one or both babies. Hugs, Marieke

As the other ladies mentioned, AFP results are often inaccurate with a multiple pregnancy. The u/s will also give you some more info. If you do decide to go with amnio, make sure you do find someone who is well trained in this.

Please let us know how things go.

Diana

[BC-NanceLee]

I had the same results at age 37 with Cole. I refused amnio as I have a history of miscarriage. They did level 3 u/s which was reassuring but no proof. I spent the pg reading up on Down's syndrome - but Cole was absolutely fine.

I cannot tell you HOW many stories like this I have read on these boards. Of all the instances just here, the results have been about 100 false positives and 2 Down's babies.

[Athena]

I declined the AFP test in my twin pregnancy because of what the other ladies have mentioned - a high false positive rate. I didn't see any need to get worried about it. I knew I would never do the amnio either so it was an easy decision for me.

[Kylie]

I had a positive screen for Downs with my second pregnancy. My risk was 1:120 (I was 29). I had an amnio done and my baby was fine. With my twin pregnancy I declined the test alltogether. I had heard that it wasn't accurate with multiples. I am sure your babies are fine, it's really such a silly screening. I don't know why they do it if it is so innaccurate . Don't stress over it !

I am so sorry you are having this worry.

First of all it's really not a "positive" for Down syndrome - it's just increased risk over what you have based on age alone- when taken in relation to your hormone levels.

I had a very similar experience to yours. For my age the risk was 1:270 and for the levels I had it was 1:93. Now if you told me that my risk for Down was 1:93, I would have thought "Wow, those are pretty good odds. Most likely my child will be in the the 93 not the one". But when you tell me my risk is increased over what it would be for age alone.... OK then I freaked!!!

My DD was fine. We didn't do the amnio as she had no soft markers.

Since you are pregnant with twins, your results are even less reliable. In fact I am suprised they even did the test. I didn't do it for my twin pregnancy as no one could tell me what to expect as one of the twins died the week before the test ( and was still on board).

If you look at your results, your chances really didn't increase much at all. For every woman with the exact same levels as you, one in 123 will have a Down baby. That is less than one percent.

Another thing to keep in mind. My third IVF was a Down baby. He died in utero at about 9-10 weeks. In the research I did, I found out that a large percentage of babies conceived with Trisomy 21 die in utero- like 75%. More die than are born. I never realized that. And the older you are the more likely they are to die in utero. They are not really sure why, more "flawed" older eggs or possibly the maternal/fetal support isn't as good. So the fact your babies continue to do well is a good indicator.

dr j

[micky shae]

Both ym RE and my OB told me they would do the AFp if "I" wanted it but they both recommended that i NOT do it. Multiples (as said before) commonly produce false positives and it wasnt worth the worry since more than likly if I got a positive it would be wrong.

They said with all the detailed US we would do those wuld be much more accurate at picking up problems.