Abnormal AFP Test

We always skipped the AFP due all the falst positives. But I do have a 1 year old son with down syndrome. So if you have any questions or need to talk feel free to message me.

now i know i am responding late -this beautiful child has been born so congrats!but what i do want every mother out there know that sometimes doing the afp test serves you and the childs futer well.I did have a high risk pregnancy so my dr. did want to do every test.everything was fine .i did do the amnio and was nervous but in the long run i am thankfull.my son did have a genetic disorder.one of which i never heard of.was given a few days to decide what to do,my son is almost 6 now.about every 1 and 700 hundred males have this disorder but dont ever end up finding out untill later in there life-i found out via amnio and @ least am educated and he can get the help he needs.i am not trying to tell all of these mamas what to do ,my own sister opted out-its just that sometimes we have to look @ the possibilitie of the 1 and 700 hundred being a possibilitie!

hey S.,
It didn't happen to me but to a close friend of mine. She had the same thing happen to her, and she had to go to a couple different hospitals and get a couple different tests. I'm not positive on the details (ie. the test) but she ended up having a beautiful healthy baby girl!! She was really upset at the test and for her second she decided not to even have the test. Both of her children are healthy.

Yes! I am 27 years old and on my third pregnancy my AFP came back with a 1 in 36 chance of my baby having down syndrome. I went to the genetic counsler, they give you an ultrasound to see if your due date is off because that affects the results. Once they determined that mine was off by about a week they reran the results and it came back with a 1 in 100 chance. They will also look for calcium deposits around the baby's heart during the ultrasound and other things that are charactaristic of down's like gathered skin at the back of the neck and a few other things. They should offer you an amnio also which will determine yes or no. I declined this after looking at the ultrsound and seeing normal amounts of calcium around the heart and everything else looking okay. What a stressful time for you. My son was born healthy and normal with no signs of down's. Good luck to you and your family, try not to think the what if's to much. :)

Both of my kids had high AFP scores. They are both fine. with my daughter they told me that they could see down's markers on her with short legs and fingers and that she had a fat roll on the back of her neck that was also typical with babys with downs she came out fine. Trust in you ability to know your baby. after all you are the only one who at this point does . Hope all is well K.

I have a brother with down syndrome, and also a daughter with down syndrome. After the birth of my daughter, I received 2 phone calls from 2 different people, indicating the same results as yours. I don't recall a percentage, but an abnormal AFP, with the possiblity of down syndrome. Upon the births of both children, neither were down syndrome. I refused the test many years ago, for that very reason. The possiblity of it being a false positive. I realize that a child with down syndrome is not what parents expect...however, having it in my life forever, has been nothing but a blessing, not only for me, but my family. If at any time you have any further questions, please feel free to contact me.

Dear S.,

Although I have not had the experience, my sister-in-law and MANY of her friends have had similar results on this test. ALL of their children are fine. My sister-in-law was beside herself and in doing research found out that these "false positives" are not uncommon.

Good luck. I'll keep you and your baby in my prayers-

K.

S.:

Hi. I see that you've already gotten a ton of responses but I'll throw mine in the ring also. I am 40 and am on my second pregnancy (my son is 2). The only testing I had with my first son was an amnio because I just wanted to know everything for sure so I didn't bother with anything else. This time around I have a different doctor and she seems to be more into the testing so I had the nuchal tranclucency test (they do an ultrasound and prick your finger for blood) - this is just a screening and also gives you odds but it came back really good for me - I don't remember the numbers but I had the same risk as like a 22 year old. It is done really early on. Then the time for the AFP test came up - I said ok what the heck. Well it came back positive. I wasn't super worried because I had more faith in the nuchal translucency test which has a much, much lower rate of false positives. Based on the NT test I wasn't going to have an amnio this time but the positive AFP test was enough to push me to have an amnio again just to be sure. Everything came back perfectly fine from the amnio. The genetic counselor said my age plays heavily into the AFP calculation - this is in addition to whatever they find in the bloodwork so it seems that just based on the bank of statistics they have if you are older I would think you have more likelihood of a false positive just because you're older and not based on anything concrete in the bloodwork. I really hate this AFP test as I think it causes a lot of women to have unnecessary amnios - I think the nuchal translucency test is much better in my own non-medical-school opinion. The stress all of these tests put an expecting mother through is really no fun. Anyway, as you can tell from the other messages the percentage of false positives is extremely high with this test. You can get a level II u/s to see if there are any soft markers for Down Syndrome and you can talk to a genetic counselor (I've had two and they have been really awesome) and then decide if you want to have an amnio or not. BTW, the state (at least in CA) will pay for the ultrasound if you have a positive AFP. I've had 2 amnios and they are no big deal at all. Good luck!!!

Hi S.,

I actually opted out of the AFP test with this pregnancy because the statistics of me having a false positive actually increased due to my age. I had the test with my first pregnancy and I was 36. The results were negative. But because I'm going to be 38 when this baby is born, they said there was a 20% chance I could have a false positive. I know a lot of women that had positive results and their child ended up being fine. They should also be able to tell you more from the ultra-sound as well by measuring the forehead, back of the neck, etc to determine if there is a chance your baby has downs.

Best of luck to you and try not to worry - I know that's difficult.

I had a friend that had an abnormal AFP test and received the results on 9/11 as we all sat around work listening to the news about the day's unbearable events. The results showed a chance of spina bifida. There are a number of things that could happen to make the test show abnormalities (e.g. a miscalculated due date, stress, etc.), yet there is nothing wrong with the fetus. In February, 2002, Hannah was born and the only thing wrong with her was that she didn't want to be born, requiring her mother to have a C-section. Read as much as you can about the test, ask your OB/GYN about anything else that can be done to verify the results, etc. Also, it may be a good idea to read about Downs Syndrome to educate yourself and your family about what could happen. With birth defects, though, there are a wide range of resources available to families to support them through whatever they may need.
Good Luck!
D.

I have heard of lots of women who have had this happen and had healthy babies. Lots. A 1 in 60 chance is the same as saying there is a 59 in 60 chance your child will be fine. Aren't there more tests to get a more definitive answer?

Hi I personally havent had that experience but I know about 3 or 4 different people who were told that their baby had down syndrome and everything turned out fine. it makes me wonder how reliable those test really are. My sister in law was told that, as well as my sister and a family friend that i can remember at the top of my head (and my sister in law has a brother that has down syndrome and everything turned out just fine) I wouldnt let it stress you out so much.

Hi S.-
I just wanted to let you know...when it came time for me to take the AFP test, I opted not to do it based on a LOT of my very close friends and family had taken it and been told that their children would be down syndrome. Each of the people I had spoken to about it were told this and each of them then went on to have perfectly healthy children. I didn't have the test so don't know what it would have said for me but my daughter is also healthy. I'm not downgrading the test or questioning the validity of the results but from what I have seen more than a handful of times is that it very often is mistaken. Just something to think about. I will keep you and your son in my prayers. B.

Hi S.,

How old are you? If you are 35 or older they should schedule you for a follow up lever 3 or 4 ultrasound, which is able to detect signs of down syndrome. If you are younger and your insurance won't cover it then you can elect to pay for it yourself just for your piece of mind.
Also, AFP tests are not always accurate. If you are healthy and taking your prenatals your baby should be just fine. The fact that you already had another healthy baby is a good sign too.
Hope this helps!
T.

S.,

If you don't have a perinatologist, now would be a good time to get one. They usually have a geneticist on staff or at least available. When I was pregnant with my first son, my AFP results were fine but he had some of the "markers" for downs on the ultrasound and we were offered an amnio - which I turned down because I wouldn't have aborted regardless... I can't remember what our "odds" were but he's healthy - autistic but otherwise healthy. Just keep in mind that you may have a 1 in 60 chance of downs but you have a 59 in 60 chance of no downs... If it were me, I'd see a perinatologist. I had a perinatologist for both of my pregnancies because I have a serious preterm labor issue. Any time you have any "issues" a perinatologist is a great resource because they've got much different training and experience (and equipment!) than a regular OB.

Hugs,
T.

Hi,
I am also pregant I am due this Sept. I had that test done also I am 27 and the results came back that I would have a 1 in 28 chance of having a baby with Down Syndrome which in the ratio for a 44 year old woman.I went through the genetics screening and ultrasound and the result was that they had my due date off my two weeks, the genetics ultra sound is very detailed I was even able to find out the baby's sex at 15 weeks! I retook the test and it came back with a 1 in 340 chance which is still lower than it should be for me, it should be 1 in 999 but its better than before. The genetics advisor told me that even though this test come back postive only 5-10% actually have the disorder. If you want to know for sure they can take amino fluid from you and actually look at the baby's DNA to let you know for sure. I choose not to because the rate for miscarriage was higher for me. I have known people who had this test done w/o the amino and the results came back postive but their child actually was born fine no disorders. This is my second child and if I have anymore I won't be getting this test done. It was too stressful they called me on a Friday to tell me that my son had a high chance, it was the longest weekend of my life I didn't tell my family because I didn't want to get anyone upset if it was no concern, and that's what ended up happening, they have changed my due 3 times now. This test is very time senstive so make sure all your dates are correct and have the ultrasound done because they can see signs in the ultrasound like spina bidfa, GOOD LUCK!!

Hi S.,
I had a high AFP with my middle child. I also had a 1/60 ratio for down syndrome. I had Kaiser for insurance and they sent me to Sacramento for a level 2 or 3 ultrasound. At 15 weeks they can really see a lot with the upper level ultrasounds. I then had genetic counseling, the same day, and they reviewed the results of the ultrasound. My son had no physical appearances of down syndrome, so I opted not to have the amnio. After that ultrasound my ratio for having a child with DS went to 1 in 400. They base this on your age and your weight. I was only 25 at that time. I had a perfectly fine baby boy who is now 10 yrs old. Good luck! Don't let the AFP results ruin a beautiful pregnancy.
Happy Day
K. F

I too had an abnormal AFP test. My odds were 1 in 77 (I think). I knew immediately what I had to do. I made an appt. with a specialist for a few days after i received my results. At that meeting my husband and I had genetic counseling and then were faced with the option of ultrasound or amnio and ultrasound. The Dr. told us that the ultrasound could determine some signs, but the only way to be 100% correct, we would have to get the amnio. Since we both needed to know we chose the amnio. It came out normal. In my opinion, I would rather be uncomfortable for 5 minutes and know that my baby was healthy than not know for sure.

I have personally known multiple women who have had their tests come back abnormal who go on to have perfectly healthy babies. I have also known at least 2 women who have had normal AFP tests who had babies with down syndrome. I personally refused the test for that very reason. The follow up tests they recommend carry an unnecessarily high risk to your baby and the chances are your baby is probably fine. The only reason I would say to go ahead with further testing is if you would not want your child if it did have down syndrome. I personally decided that, because I would not change my decision to have the baby regardless of the results, having the test was unnecessary.

I didn't have the problem myself, but when I was pregnant, so was a friends wife, and hers came back abnormal. They had the Amnio done, and everything was fine. As you said- it's a 1:60 chance. That means that if you and 59 other women with the same test result lined up together, ONE of you would have a baby with Downs. If it will put your mind at ease, have the Amnio done. It does have SOME risk, but the people that I know whom have had it done have all said the worst part is bed rest the next 2 days. (THANK GOD for husbands! :O) )

I don't know if you're Christian, but if you are, rest assured in the fact that God will never give you more than you can bare; paraphase of 1 Cor. 10:13. I strongly believe that God hand select the parents fit to raise a child of special needs. If indeed you are that 1 in 60, understand that God see's you and your hubby as worthy of being trusted with this special child.

If you're not Christian, I'm sorry if this has offended you.

Either way, I send you warm wishes for a healthy, happy, bubbley, bouncy, beautiful, baby boy! -J

P.S. I just remembered, one of my friends had a positive result on the AFP. They went to genetic counseling, and prepared for the “worst case scenario”. 3 Days after the counseling they finally got their ultra sound, and found out they were actually having TWINS, which was the cause of the AFP reading being positive. So, perhaps (though almost as likely as it being DS) you are going to be DOUBLE blessed! Just a possibility! :O)

They told my husband and I that are 3rd baby was at high risk for DS. They wanted us to do an amnio. They said if the baby had DS we could choose to end the pregnancy. The risk that I could lose the baby made us choose against the amnio. We wanted the baby DS or not. I had to go in every couple months for in depth ultrasounds to track the development and check fo signs that the DS was developing. When our little boy was born he was 8lb 12 oz and absolutely healthy. Unless there is a family history, I don't think I would worry about it. The stress is bad for you, and from what I have been told that test is wrong A LOT. In fact, it is false more than it is rgihtt.I know how nerve racking it can be. Try not to worry. I know easier said than done, but my baby is 100% perfect and I'm sure yours will be too.

Dear S.,

I don't know anything about an AFP test, but I do know that Downs Syndrome babies and children are a total joy to their families and anyone else who encounters them. Very nice people, and we need more nice people in this world, for sure. C. N.

S., had the same thing happen when I was pregnant with our first son. I totally freaked out went through genetic counseling with my husband and finally had an amino that told us our baby was perfectly normal. If you want to know get the amino done. I have a very low pain tolerance and the amino was really not that bad . . . I will keep you in our prayers that everything turns out for the best. Let me know if you have any other questions, T.

oh sure.. apparently this happens all the time. when it happened to me, my doctor was sure to tell me that more often than not women are getting false positive results on this test. it just means that they were measuring levels of hormones or something in you and something came back a little off. this test has to be done at a specific time in your pregnancy, so perhaps your levels came back abnormal because they have your expected due date a little off or something. i actually went to a geneticist and had an amniocentesis so that i could be sure whether or not my child had DS and it turned out to be fine. this test, i think, stresses a lot of women out for no reason due to these false positives, but still, its probably better than not taking the test at all. dont worry, im sure you will be fine :)

My AFP with my first child was normal and I chose to have an amnio with my second which also came back normal. I have heard of a high percentage of false-positives with the AFP test. I don't know how you feel about knowing or not knowing but for us we wanted to know ahead of time if the baby had down syndrome (or any other genetic abnormality).
How old are you?? They say that the older you are the chances are greater of having a child with down syndrome. I am 39 and had my first child at 38. I have known of more women under the age of 25 who had down syndrom babies.
Good luck to you and I'm sure you will make a decision that is best for you!

Hi S.,
My AFP came back abnormal as well and now I have a perfectly healthy baby girl. In my case it was that the timing was off. I was farther along than I and my doctor thought. Once I had an unltrasound they saw that my afp levels actually matched up with how far along I was. This could be the case with you. An ultrasound will probably clear things up. Good luck and try not to worry, I know numerous other moms who had abnormal results and healthy babies.

Hey S.,

Yeah, I had an abnormal AFP test for spina bifida, I do not remember the odds but it was something like 1 in 40. So I had an Amnio and everything was fine. The nurses, at Cedar's Sinai where I had the Amnio done, that the tests show more false positives when the mother is older. I was 32 and it was my first child. If you do decide to do the Amnio go to Cedar's. The docotor there ( I think it is Dr. Williams ) is the BEST in southern California. I met two women in the waiting room who drove up from San Diego just to go this guy. My Amnio was not plesant! The first 4 inch needle wasn't long enough so then he used a 6 inch needle. OWWWWW!!!! But he was so professional and this is what he does all day every day. Email me if you want me to research his name to be sure. I think I have it somewhere in my medical paperwork...I save everything!!!

good luck,

Jennifer

S. L,
Yes I did but it was a false positive. Have they done a amio yet? That will give the solid answer. After they did the test for my son it came back ok he was ok. Sometimes it happens to be positive. And it is really not the case. It's called a false positive. Good luck and keep me posted. M. Petersen

This did not happen to me, but I have known a couple of people who had abnormal AFP tests followed by normal amniocentisis (and normal babies). If you are treated in a top-tier amni center, there is almost no risk from the procedure, so you could have the test even if you wouldn't choose to terminate an abnormal pregnancy, just to prepare yourself for life with a down syndrome child.

Hi. First off, congratulations on the pregnancy. Second, not to say it is wrong, but all the women in my family who had this done, it came out positive, all the babies did not have down syndrome. I refused my test because of this. I watched my mom and my sister in laws etc., go through so much stress and their children where healthy. My baby brother had cysts on his brain but that was not something the AFP would detect. If any of us were to have a child with any birth defects, we would love our children regardless, and really, pre birth, what could we do about it anyway. So my oppinion of this test, is, why stress out the pregnant women and the babies for no reason. Just sit back and enjoy your pregnancy. This is a very special time between you and your child and you don't want to make it sad memories. I hope everything turns out perfect for you and your family.

DO NOT FREAK OUT!!! I, too, had a 1 in 60 chance (I have a friend who had a 1 in 16 chance) and both our babies are perfect!!! I talked to lots of moms who worried and had a level 2 ultrasound that seeks out noticeable "markers" for any abnormalities...from experience, I highly recommend this to ease your mind. I know other moms who chose to have an amnio, the sack ended up leaking or "collapsing", and they lost what would have been perfectly healthy babies. I'm due within the month with my second and skipped this ridiculous AFP test with this pregnancy. I wish you the very best and I am sure your baby will be just fine.

Yes, I had an abnormal test as well. My Dr. recommended an amnio so I had one done and found out that my daughter did not have down syndrome. She is now a healthy, happy 4 month old. I've heard that it is common for the test to come back abnormal.

Unlike some of the other responses I would advise you to at very least get the level 2 ultrasound done. When I was pregnant with my now 16 month old son I too had an abnormal AFP test. My husband and I decided to have the ultrasound and amnio preformed. After 2 of the worst weeks of my life (waiting for the results) I got positive news. The amnio test wasn't something I would want to do daily but would definately do again if the need did arise. I am someone who prefers to know for sure rather than have to deal with the unexpected after the fact and be unprepared. Good luck and I wish you the best.