Scared About My AFP Results and Having an Amnio

Updated on January 21, 2010
B.B. asks from Simi Valley, CA
11 answers

I just got my second trimester screen results back and my chance are 1/37 for having a baby withDown's syndrom. I am scared...
I am also scared to have the amnio done. I am scheduled for it on Monday. I am looking for people to share positive stories on a similiar situation.

Not to be rude but I want to hear about other moms who had an amnio...

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answers from Harrisburg on

Just be strong. Mine came back higher(also my hubbys uncle has downs), so I was at a higher % rate too.
I never did have the amnio. I just felt that I was already prepared to raise a baby whether it had downs or any other condition. My darling daughter is perfectly healthy.:)
You will be fine.
Thinking of you:)

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answers from New York on

hi B., this is a really hot topic, and i dont want to upset anyone, but i suppose i might. its an extremely personal thing, but i learned an awful lot and so i will tell you my experience with it.... we had the same thing, 1/34 with my son, and i was 38 at the time, so even higher risk. however, i knew i wouldnt terminate no matter what the results of an amnio were, so that was really my deciding factor. however, it was nowhere near as simple as that. i didnt have an amnio with my first 2 pregnancies, but i had good test results for those. we found that it is one thing to have an opinion about terminating a pregnancy in the abstract, and a very different thing when it is staring you in the face, especially when you are older and with 2 other kids, as it is likely that they would be the ones caring for your other child down the road. it brought up a lot of very heavy and unpleasant conversations. but it was good that we had them and that we were able to agree. and luckily my doc doesnt push anything. i couldnt believe how many of my friends were under the impression that they HAD to have an amnio past 35. you dont. the vast majority of amnios have no bad side effects. however, a small percentage does. this was a factor for us as well, the biggest one. if it was a simple blood test, i would have done it in a heartbeat. even if it was positive for downs, though we personally wouldnt terminate i would certainly like to be more educated and prepared. there is a very wide range of downs syndrome, and no test can tell you where the baby will fall on the spectrum. my husband and i have both worked with children with downs, some were an absolute delight, and some were extrememly challenging, to put it mildly, especially down the road. most were somewhere in between, but all have a special something, imo.
i did lots and lots of reading and talking... you do need to know a couple of things... first of all, the FREAKIN AFP test, as i so fondly like to call it, has a very high rate of false positives. it is not a diagnostic test, it is a screening test, and not a very good one. i cannot tell you how many women i spoke to who had false positives. i actually got in touch with a doctor who had left his practice because he had this same awful experience when his wife was pregnant, and he is dedicating his time to developing a better non-invasive diagnostic test. i had found a paper that he published on it... hopefully someday soon! ... also, you took a blood test at about 15 weeks, you need to look at those numbers too. mine were great, that was also a factor for us. also, you can and should have a detailed genetic ultrasound. it is a long ultrasound where they look for all the genetic markers of downs syndrome and other things. there are many. most people look at the nuchal fold at the back of the neck, and the length of the limbs, but there are actually a lot more. if you arent going to a doc with state of the art machines, find one. ours had great results, no markers were found, and this was also a factor for us.
in the end, we didnt have the amnio, but it pretty much ruined the rest of my pregnancy, which makes me very very sad. my son was born "normal" and healthy, tg, but i was so completely stressed out about it, it was all i could think about. i remember after he came out, all i kept asking was if he was ok over and over :( ... even the first couple of doctor appts, i just couldnt shake it. so you have to weigh that also. stress isnt good for you, as you know, and you have to think about whether an amnio will be worth the peace of mind, it might be. my sister skipped the amnio also, also high afp results, and she was fine with it, just had faith. i wish i could have been like that. my girlfriend skipped both the afp and the amnio, also, just had faith. and all these kids are fine, by the way. only you and your husband can decide. you have to think of all these things. i wish you all the best... just remember that of all these women i spoke to, and there were many online, sites just like this, there were soooooo many false positives, the babies were fine. good luck, and feel good :)

1 mom found this helpful


answers from Pittsburgh on

I was 39 when I was pregnant with my son. This put me in the so-called "risk" category for certain fetal conditions. The paperwork I read stated that a positive result is not a guarantee and neither is a negative result. I wondered why anyone would go ahead with the testing since it's not guaranteed accurate! And I was not prepared to terminate the pregnancy no matter what the tests showed. I skipped them all and now have a normal, perfectly healthy son! Try not to stress. God bless.

1 mom found this helpful


answers from Minneapolis on

My result came back 1/77 with my first son. I did the amnio for a piece of mind. I wanted to be prepared in case he did have downs syndrome. The amnio sounds way worse than it is. I'd do it just for your own sake. Good luck and things will be just fine!



answers from New York on

Dont' worry. So many come back with bad results. Just say a prayer - have the amnio done... It doesn't hurt.. Dont' worry.. just go with it.. and good luck... I'll say a prayer for you and your baby.



answers from Los Angeles on

AFP has a history of MASSIVE amounts of false readings!



answers from Los Angeles on

Hi B., I know exactly how you feel. I had 2 amnios with my 3 pregnancies. I have a 16 month old baby girl Gianna. I was 36 when I got pregnant with her and was terrified with all the tests we have to endure just because we are over 35 now and at a higher risk. My AFP came back positive and they told me my baby also had downs. I cried terribly for the entire 13 days that I had to wait for the results. I researched online for hours and days and everywhere I looked it would say that the AFP tests are high in negative results. I prayed every night and went to a prayer group to pray for my daughter. My baby Gianna came out fine!!! Nothing was wrong with her. Dont worry, both of my amnio's were not painful at all. You are going to feel pressure in the area where the needle is going in but that is about it, dont fear anything, everything will be just fine. I have come to realize that those (AFP) tests just stress you out more instead of giving you a piece of mind. I had the amnio for peace of mind too, but the waiting for the results is what is the most stressful! I will pray for you and your little one but I believe everything will turn out great. Please let us know what happened.

On another note my first son who is 10 yrs old now was born with gastroschesis(instestines out of his body). The AFP test did come out positive with him and that is why I took the first amnio and they did determine he had gastroschesis after the results came back, but I had the best dr's and if you were too see him now you would never think he was born with a birth defect.



answers from Odessa on

I'm a 40-year-old mother of two. I had beautiful pregnancies with both. My latter is Down's. We declined the AFP testing. These were God's children and He would provide for them no matter what. The AFP test is very inreliable, causes unnecessary stress during pregnancy. Amnio is extremely dangerous and risky. I've known women who underwent it to confirm the AFP results only to find their baby was normal, but lost the amniotic fluid following and lost their normal baby.

Parenthood is a walk of faith like none other. Ultrasound can keep tabs on the health of the baby if you have any concerns.

My thoughts are not to do the amnio. Turn it all over to God and enjoy your pregnancy and delivery and newborn. We didn't know until my baby was two months that she has Down's. I would never trade that time period of getting to know my child for who she is and not a label that's been placed upon her. Don't let some unreliable test rob you and your child of that. They are sooooo inaccurate. It's not worth it. You only get one shot of enjoyment with your pregnancy and newborn period with this child. Don't let anyone take that away from y'all. Medical problems are medical problems and can be detected without posing a risk to the child. There are lots of resources out there to fall upon to prepare you if you do find out something is going on. It's not like we've had to remodel our home to accomodate our Down's baby. We have been able to provide her everything she needs without having to know ahead of time.

Enjoy your pregnancy and baby. There is a greater chance that everything is just fine. God will carry you in His hands and make all things possible.



answers from Honolulu on

I had an Amnio, twice.... for each of my pregnancies. My reason was because I was over 35 years old with each pregnancy. I choose to do it.
If I had to do it over again, I would.

The Amnio itself... was not bad. I just hurts like a pinch. Like any other "shot." They numb the area first. The process is quick. You might feel a little cramping... like menstrual cramps. But it lasts for only a few seconds. Then after that, you take it easy and rest. I had it done with my Husband being there and him driving me home afterward.
It really was not that bad... my imagination actually made it worse. But the actual procedure is fine. My Husband could watch it, since there was a screen above us to watch it. But I was too chicken to watch it.

I was glad to have the procedure. Mine was done by my OB/GYN... whom I trust immeasurably and who has lots of experience with it and is very gentle.

I now can rest assured, that my kids do not have any genetic issues, per the rest results. So that is very comforting. But... you and Hubby have to talk about it... and what you would do no matter how the results comes out. And, prior to the procedure, you will meet with a Genetic Counselor as a part of the routine.

It really was a fine experience, and I had it done twice. It is more scary thinking about it, that actually going through it. I think going to the Dentist and having a cavity is worse! LOL

All the best to you,



answers from Wichita on

I was told that AFP tests have a high rate of false positives. My son was suppost to have spina bifida (but he didn't). I had an amnio with my daughter to see if her malformations were genetic (they weren't she just had complications of amniotic band syndrome).
The amnio isn't so bad, just don't look at the needle (I didn't, but my husband said it was huge). They don't give you any numbing medications or shots & it feels like a prick (not as bad as having blood drawn). The do an ultrasound at the same time to see where the best pocket of fluid is & to avoid the baby. I just watched my baby on the ultrasound to take my mind off of the needle in my belly. It doesn't hurt when they remove the fluid. Afterwards you need to go home & rest for the day & drink lots of water. I didn't have any problems after my amnio & the next day I was able to do my normal activities.

God bless!



answers from New York on

We were terrified too... my husband's paternal 1/2 aunt had Downs Syndrome. Just keep in mind that tests will only tell you if you are "at risk" and the amnio will confirm. Because I did not want the amnio, we did not have the AFP.

Here's what I learned from my OBGYN- First, the AFP screening only indicates a possible elevation of hormones and it is very unreliable, which is why they have to follow-up with more accurate testing. My sister went in for her second trimester screenings, had an abnormal AFP and the ultrasound revealed twins! Yes, they found out in their second trimester that there were going to be two!

They can tell whether or not a child has DS or Spina Bifida using an ultrasound. It takes longer b/c the doctor has to take specific measurements across the bridge of the nose and forehead, but you can be tested without the amnio. The amnio is faster, but it is not your only option. It took my doctor nearly an hour to review the pictures and take the measurements, but he was clear with us that his results were valid.

Good luck and don't be afraid to ask what other options are available to you. If your testing comes back and your child has DS, use the next several months to seek-out support groups and be prepared! You will want to know what services are available to you through your county Early Intervention program and through your insurance. Ask every question you can think of and seek-out a pediatrician who has experience working with children who have cognitive and developmental delays.

Think positive...

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