AFP Bloodwork Tested Positive for down Syndrome, Now Amniocentesis

One of my girlfriend's in Boston had a similar experience. The results of the blood work came back positive for Down's Syndrome. Her Ob sent her to a neonatologist, who decided to do an ultrasound instead of an amnio. The results showed there was nothing wrong with the baby and the test was a false positive. Wishing you the best of luck.

C.

My best friend heather had the same thing happen. She decided against the test and waited till birth to see that all of her worries were for nothing and it couldn't have been anymore wrong she has an extremely healthy baby girl. Best of luck

I personally refused to take the test. My sister had the test come back positive and then once she did the amnio it came back negative. Her daughter was born happy and healthy. Don't let those blood tests stress you out! :)

M.,
I just wanted to let you know that the blood work is a screening test to see if a diagnostic test is necessary. Because it is only used for screening it pulls a bunch of people into the positive category that have babies that do not have Downs or other birth defects. In other words they consider it a good thing that it pulls so many people so it catches as many as possible. I was wondering depending on how far along you are if your doctor offered to do a nucal transluency screening. Ok I know I spelled that wrong but maybe you get the gest. This is a ultrasound that measures the babies anatomy at the neck and looks for other markers of the anatomy. It has proven to be more accurate and it is combined with a blood test (finger stick). This gives you odds without the risks associated with amniocentesis. The only way to truly know if your baby has a disorder is to do the actual test (amniocentesis). To answer your questions I know tons of people who had positives to the blood work but nothing showed up on the amnio. I know this has to be very stressful for you.

Good Luck!
S.

I had a positive AFP, with amnio recommended - but I had planned on adopting special needs, so I didn't have the amnio. My son is perfect.

I'd also like to direct you here: http://www.ceri.com/dixie.htm

My older sister was Madison's teacher for some time, she said her biggest problem was the fact that she is deaf - not ds.

That being said, I'd also take into account your age and your husband's (with advanced age comes higher risk), and the willingness to risk a miscarriage of a healthy baby to find out if the baby you're carrying has ds - AND whether or not you'd terminate if the test is problem.

My logic - if you would terminate, and you're over 35 or your husband is over 50 - and you know your fetal age is correct, then it's probably a good idea to go ahead and test.

If the idea of a miscarriage makes you want to sue for malpractice, then it's probably a bad idea to test.

If your dates may be off, the AFP is probably a false positive.

If you would not terminate, but want the information ahead of time to "be prepared", realize that later on in the pregnancy they can do an ultrasound and measure the nuchal fold and a 3d visual of the face can give a very good idea of what, if anything, you may be dealing with.

I too had a positive blood test. It was very scary hearing the news I did have the amnio and it was the longest two weeks of my life, waiting for the results. Everything came back negative. My daughter is now 12 and she is fine. The chance that your baby will not be a downs baby is greater than if it were so for your own peace of mind do the amnio. You will feel much better when you do.

I tested positive for Down syndrome in the last 3 of my 4 kids. I had one amnio. The last two we decided against it (your numbers jump up quite a bit just for being over 30) All four were fine. If you have no family history of it, the chance is extrememly small from what I understand. I had the nuccal translucency test but I think it has to be between the 11th and 13th week only. Best wishes to you!

Hi M.,
You are a wise woman to pass on this test because the odds are in your favor that everything is normal and unless you are going to choose to end your pregnancy, there is absolutely nothing you can do to change anything.
It drives me a little crazy that doctors offer all these tests and they don't discuss patient options first. Like what happens if someone does discover an actual problem? I think that question should come first.
I wish you many blessings.
Take care,
R.
PS If you'd like to visit my site to learn about how a doula can help you have a more satisfying birth with fewer complications, please visit http://www.themotheringway.com/

M.,
My sister-in-law tested positive with my oldest niece. This was especially alarming as my bro. and I grew up with an aunt who had Down Syndrome. However, the test was administered a bit too early, was taken at a later date and was negative. Before you have the amnio you may want ask your Doc about the timing of the test. Best wishes for a happy, healthy pregnancy and child. However, if your baby does have DS, just remember, he or she can live a relatively normal life and will be full of love and blessings.
M.

I have had those tests for 2 pregnancies now. The first came back just fine. With my second, they told me that there was a chance he could have DS. I had a level 2 ultrasound and that brought the odds down. The baby measured normally and had none of the markers that would indicate he had DS. These tests are not always accurate. In fact I have been told that false positives are more common than not, especially when you are over 35. (I'm 37 and 30 weeks pregnant.)

If you are REALLY concerned then opt for the amnio or CVS. I didn't because I felt like it was out of my hands. I wasn't planning on doing anything if they told me definitively that my son had DS. I guess it's a personal decision but I do understand the initial shock and worry that you experience when your doctor gives you the news that there is a chance, even if it's slight.

Everyone dreams of having a healthy baby and chances are you will have one. I just had an ultrasound yesterday and he's doing just fine.

Take good care!
L.

I haven't read all of the responses to your post, so this may be redundant, but this same thing happened to me. I had a CVS performed, which is an alternative to an amnio and can be performed earlier. There are risks involved with it as well, but the risks were worth it to me; otherwise I would have spent my entire pregnancy worrying.

I have had 3 kids and 2 of my pregnancies came back as possiblity of DS. Both pregnancies ended up being fine. If your due date is off, it will cause a false positive test. We chose to get an anmio for our first test (2nd pregnancy), but the test came back fine and my daughter was born perfectly normal. Our third pregnancy (2nd time coming back as DS) we chose not to do the amnio. That daughter also was born without DS, but she does have other unrelated medical issues.

Good luck!!

Hi, i know it sounds scary having the test done but i have to tell you i went with my sister-in-law because her first blood test showed the same thing. The test itself wasn't as bad as we both thought. We were both pregnant only 6 wks apart and it was weird that her results came out positive and mine didn't. Her dr. told her the chances of her amniocentesis coming out positive were low but ofcourse they wanted to be sure. Her did come out negative and the baby was born healthy and is now 4yrs old with no medical health problems. good luck to you and your husband and i will keep your family in my prayers.

My first pregancy came back with a positive and the doctors hounded me to do an amniocentesis because I was 35 and I refused due to risk involved. It came down to what would I do if the baby was truely down syndrome.

Since I had been trying for 7 years to concieve I was not going to take any risk.

I worried my whole pregancy and I am glad to say my daughter was born healthy and just turned 13 years last month.

I think the medical profession tries to cover themselves.
If you test your blood just one week later than normal you can get false positives.

We also had a neighbor who tested w/ amniocentesis positive and they decided to deliver anyway and the baby was not down syndrome.

I suggest you really talk to the professionals and your husband and decide if it makes a difference for the pregancy.

Good luck.

Well, all of this blood work is optional and yes there is a chance it is wrong. Most women that have abnormal results will go on to have healthy babies. I am 35 of course because I am an older mom they wanted me to get it done when I had my son, who is almost 18 months. I decided against it for 2 reasons, one I had already had 2 previous miscarriages and two, I wasn't going to have an abortion if my child wasn't perfect. If that is what God was going to give me then so be it, I would just wait to the end to find out. Gods has plans for special children, and he does not impose them on mothers who cannot handle the situation. I am currently pregnant, and of course there is always the possibility that this child will be a special needs child. But we'll find out in a few weeks, since I am due in 5 weeks. Its not like there was going to be any type of operation that could change it. Even though the chance was small of having the amnio done and it not closing right. Unless choosing to terminate your babies life is going to be an option, it only gives you something to worry about, when in the end there was nothing to worry about. Also you have to look at your risk factors? Is there anyone in your family or his that has downs? Your age? Even if it was something operable, they wouldn't operate until after the baby was born for the most part. Good luck on your decision, on whether to have the amnio done or not. Here is a link for moms who have had abnormal results. http://www.i-am-pregnant.com/encyclopedia/T/Tests-during-...
Also when they do a sono, they can tell if the baby has downs by the width of the neck. If you want to have a less invasive test done you can always get a sono done.

Hi M.,
Just wanted to give a little input also! I did not go through the exact same thing as you but my 2 yr old beautiful little girl has DS. She is just as "normal" as any other child, she does not have any health problems and she is smart as a whip! When i had the tests done I was about 16 weeks as well. The test came back....NEGATIVE. So, naturally it came as a complete shock to me the day i gave birth to her when the DR.'s told me that my baby had DS. But you know what? I would not have it any other way! She is my daughter and I think even if my tests had showed a positive, I wouldn't have given it a second thought. And I would never consider an amniocentesis again. I had one during a previous pregnancy and it resulted in a miscarriage. I highly blame it on the amnio. Never again would I even consider it. It really isn't worth it. Regardless of the health problems, differences that your baby might have he/she will still be your baby, YOUR creation! You can do nothing to cause or cure it! And IF by chance you do have a baby with DS you will know exactly what I am talking about and where I am coming from! You are going to love your baby either way so why does it matter if they are "different"? That is just the way I see it. Don't worry everything will be just fine!
N.

i just want to say for anyone pregnant out there, if you are not going to even consider abortion if your baby have a birth defect, then i don't think you should even do the screening. why lose peace of mind if you are determined to give birth to a baby regardless of defects?
i am at risk for having a baby with cystic fibrosis, as both my aunts died of it in their 20s. but my husband and i chose not to have the bloodwork done in both my pregnancies because #1, you don't know anything 100% until the baby is born and #2, it would not change our decision to keep the baby.
i am happy to say both our girls are perfectly happy and we have every intention of having 1 or 2 more kids, regardless of the risk.

As a midwifery student, I would never recommend those tests. Not only are they fairly inaccurate, but if you do not plan on terminating your baby, then there is no real need for them. I would take a deep breath and enjoy your pregnancy. I know of cases where physicians had their wives tested and it came back 100% problem and had every neonatal specialist at the birth to try and help this "poor, very sick" baby. She was born perfectly heatlhy. All that worry for a beautiful, completely healthy baby. I'm sure they would've enjoyed that pregnancy much more with out the worry of having a very sick child.

Hope that helps.
L.

I just want you to know that my best friend had the same thing happen to her 2 years ago with her first daughter. The doctor did the test twice and it came back positive. She and her husband were told the baby was going to most likely have Down Syndrome. The baby girl was born on her due date and had no Down Syndrome. I was always told that those tests were not accurate at all so please don't let this shake you! I hope this helps somehow! I wish you and your family the best!

When I was pregnant with my son, my OB recommended not even doing the test. He said it comes back way too many times as a false positive and it is not worth scaring people. He asked what we would do if we found out that the child had Downs and we said nothing, so he encouraged us not to even do it. The sonograms and everything are so good today and the nursing staff is so well trained, they notice when the babies aren't developing right anyway. I chose not to take the test. My son is healthy. A relative took the test and it came back a false positive. She had the amnio and proved it false. Their daughter is healthy.

Chances are you are fine! I had the same result and come to find out I had gestional diabestes and had to limit my sweets intake. I believe the high blood glucose thru my bodies chemistry off and skewed the results. So have that test done as well to be on the safe side. I am sure if you are as cautious as you sound you will have all the required tests completed and everything will turn out just great! My daughter was born perfectly healthy and I pray that your child does too! Congratulations and welcome to the "Mommy Club".

I had an amnio done after a level 3 ultra sound was performed and found my ds had a heart defect. It was the most scary thing I had been through to that point in my life. I got through it and it helped my husband and i prepare for the arrival of our son. If you have specific questions, please email me and I can expand on my experience.

I am 7 mnths preg. and when it was time to do this test my Dr. and nurse cautioned me on having it preformed. They told me, pretty much word for word, that the range of error on this test is very wide, you could have a positive result and it really be negative, or visa versa. They told me that if it was positive and I had an amnio, there was a high risk for miscarriage. They told me of a woman who had a positive test, had an amnio, had a miscarriage, and later found out the baby was fine. I know you have already had it done, but yes there is a large possibility that the test is wrong, and there is a risk with amnio. 1/2 to 1% is a very small margin.

I have some hopefull news for you. My daughter was expecting her child at the age of 19-like that was not enough we were told she was looking at some very HIGH odds of downs. For her age this was highly unusual. Her odds were like one out of 158. That is high. She is a Marine and was in Japan at the time. They were going to send her to a large city for the amnio. The marines missed the first date and she had to wait a week. When she got there she was told she was to far along. So she and her husband knew there was not much more to do but wait. They named the baby Amaya Faith because they had faith that it would all be fine. She is fine. We are caring for her (2 yr old) while daughter serves in Iraq and that is why I am on this board. Don't want you to think I am just a crazy grandma. I was looking for resources! I hope you will have such great luck as we did! Hope abounds.

Grandma Deb

I recall that the AFP screen has a pretty high false positive rate- enough so that some people question the purpose of it. I would ask your doctor to have an Ultrascreen first (this is the nuchal translucency ultrasound) before you go with the amnio- less invasive and little to no risk.

Hi M.,
I personally have not had to go through the things you are facing, but I wanted to let you know that my heart goes out to you and I will keep you in my prayers for a healthy baby and easy pregnancy.
Much Peace & Many Blessings to you and your family,
M.

there r a lot of false pos. with this test, when preg with 1st son it was pos, I wouldnt have the amnio as sugg by the genetic spec. I told them I wouldnt love my son any less if he was ds. its your own pref, and comfort level the dr tryed to scare me a bit so beware
good luck its difficult decision

Hi -

I have known of a least 2 moms who had the blood test done and it was positive, but delivered very healthy babies. I don't think either of them went through with the amnio, but their babies were healthy.