Downs Test Positive, Anyone Else?

Updated on March 11, 2008
D.P. asks from Chattanooga, TN
41 answers

My sister recently had a test come back positive for her baby for downs syndrome. It was one of the first blood tests done. I'm not sure which test it was but my question is, has anyone else on this board had this test come back positive and ended up with a healthy baby? If so, which test did you have done? She hasn't had the amnio yet, but is scheduled to have an u/s done this coming Thursday to look more closely at her little one.

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So What Happened?

My sister went for the amnio and her baby is fine! No trace of Downs or any other problems.

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S.B.

answers from Alexandria on

Two friends of mine were told to prepare themselves for a downs baby-and both ended up having a baby without downs. I know that the test is very sensitive of when you do it b/c it can have false readings otherwise.

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J.S.

answers from Birmingham on

yes, I tested positive for Downs the day before Christmas and subsequently went to the amnio, although I was opposed to doing this test due to the risk factors. They showed me all the indicators that confirmed the results (smaller kidney on one side, etc)while at the test and while doing the ultrasound. The amnio came back negative. He is 9 and brilliant and funny and kind and does not have Downs.

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N.T.

answers from Nashville on

Yes. That test is known for its false positives. I had a friend who tested postive and her baby is a fine/healthy little boy today. My own doctor told me not to have the test done when I was pregnant because there is such a high number of false positives. I had no intention of terminating or having an amnio done, so there was no reason for me to take the tests. They will screen again for Down's/Spina bifida at her ultrasound appointment(around 20weeks if they don't talk her into an amnio before hand. I have two very healthy girls. N.

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K.G.

answers from Memphis on

Okay, this happened to a friend of mine also. She was pregnant w/twins (even though she didn't know it), and one of them had died. I mean, she was like 2 months pregnant or something. So, her levels of whatever it is they find for Down's Syndrome, were very high. She was completely freaked out until they did an ultrasound, then amnio. So tell your friend just to hold on a little bit. My friend's baby is a healthy boy, about 10 now. One of the smartest kids I know. And he doesn't have Down's. Neither did his unborn twin.

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T.P.

answers from Little Rock on

Hello, I have never had a test come back positive for down syndrome. I have had a blood test come back positive for Open Spina Bifida. Afterwards, there was a 3D ultrasound and nothing was found. I am able to say I had a healthy baby but it isn't certain that he did or didn't have open spina bifida b/c I went in premature labor and little McKinley didn't make. I hope it helps any how. I will say this, while continuing to carry that baby the only I could do was stay positive and remain prayful.

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L.B.

answers from Shreveport on

The blood work does not actually tell you that your baby has Downs. It actually tells you if you are at risk for having a DS baby. So that's really what came back positive. This happen to my best friend, and when we went in for the ultrasound they said the baby was normal and then explained what the positive blood result really meant. So there is a likely chance that her baby will be just fine. But if she has a DS baby there are lots of great resources. I've met some pretty amazing children with DS, and grown ups too actually :)

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C.G.

answers from Huntsville on

Hi D.,
I have a good friend whose daughter was born in October 07-her test ended up positive and she did Amnio and everything was FINE.
This is not automatic!! Even if it is-all children are a blessing! But-the results aren't automatic.

By-the-way my Daughter is 22Mos Old and I really miss the days when she was too small to walk and needed me more too!! :-( :-) I Do love watching her run around and identify things-she is starting to make 2-3 word sentences and is SO Cute!! Brighter days are coming and now she will come up to "Mama" and climb up in my lap and give HUGE hugs and kisses. It's even sweeter than when she was a baby b/c she initiates affection now and not the other way around :-D.

Best of luck to your sister and to you too.
C.

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D.W.

answers from Shreveport on

I have not had the test come back positive, but my step-sister did with her first. Not only was he a normal, healthy baby, but he is a straight A student. The test isn't always right.

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B.H.

answers from Chicago on

I had a friend who had the same positive test result, and was very worried at first. Finally she accepted that it was possible and decided that God wouldn't give her more than she could handle. When her son was born, he didn't have downs. He has had no health issues whatsoever. Now he is a beautiful, smart 5 year old! Tell your sister not to worry. There are sometimes false test results. If the test results aren't false, she'll still be a wonderful mother, with a baby who loves her more than anything in the world.

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C.I.

answers from Fort Smith on

I have known so many people that have had a false positive on that first test, that I refused the test. I think that worry robs the joy of pregnancy. Many times the doctors can spot certain signs on an ultrasound. One of my friends that had the false positive, did a very detailed ultrasound and not an amnio. The doctor was confident enough to not recommend the amnio. The baby was fine. My doctor with my third child agreed with me and did not recommend the test. She said that almost all women that are 35+ will have a false negative. (I was 35) Best of Luck to your friend.

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N.K.

answers from Nashville on

My girlfriend's first child tested positive to Down Syndrome during the first round of blood tests. She then had the amnio (which rumors say can be dangerous) and that came back negative. These tests can be so hard to read and are very stressful. Best of luck to your sister.

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J.H.

answers from Birmingham on

I have has this happen twice and had normal amnios. I believe this is more common as mothers get older. Hope all is well

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R.M.

answers from Memphis on

How old is your sister? I too tested positive for downs with my last child I was 32 at the time. My son did not have downs. He is 11 now but has aspergers syndrome.(this is a high functioning form of autism) He is very intelligent but his social skill are a little lacking. He is getting help with that at school.I don't mean to worry you and it doesn't mean your sister will have anything but a healthy baby. It just means she has the gene in her blood stream. I will tell you that it is possible to test positive without having Down syndrome. Tell your sister to hold her head up high and just have faith in God.

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M.S.

answers from Little Rock on

I am currently pregnant with a baby girl due in less than a month. I too had the blood test that came back positive...apparently this happends to a lot of women. I went in for the ultrasound and declined the amnio since I have a history of miscarriage. The ultrasound showed not one marker for downs...this doesn't completely eliminate the possiblilty but she appears to be growing normally and I am not too worried. Several friends and coworkers of my husband had the same thing and not one of them have a downs baby. The best thing is not to worry.

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B.B.

answers from Lafayette on

My sister did the triscreen blood test that came back positive for down syndrome. It was a false positive though since she had a healthy baby with no downs. I think it's pretty common to get a false positive and for that I didn't have the test done with my first son and am currently pregnant and will not be getting the test done this time around either.

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T.

answers from Chattanooga on

Tell your sister not to freak out yet. I was 35 when I had my son and 37 when I had my daughter. I was considered high risk because of my age. My triple scrren blood test was postitive for risk of Down's Syndrome both times. Both of my kids are completely normal.

With my first pregnancy (son), I went for the high level ultrasound. They were fairly certain that the baby was normal but could not be 100% without an amniocentesis. The dr. that saw me advised me that there was a risk of miscarriage with the amnio. She said that if we were not considering termination of the pregnancy if the test was positive that she would not recommend the amnio. Since we had already decided not to abort no matter what, we did not do the amnio. With my daughter, it was pretty much a repeat of the same situation. We did not do the amnio with her either. Apparently there are a high number of "false positives" with the blood test. Hope this helps.

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B.T.

answers from Nashville on

Yes I had the test done not the amnio.Was too nervous for amnio. The test came out pos. My child came out healthy born with 2 uvulas (back of throat) but healthy. My child is a joy.Cause of my childs uvula he is going through speech therapy.Hope this helps.

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V.P.

answers from Jonesboro on

My daughter had a initial blood test that was positive for Down's syndrome but later tests were negative and her baby was born healthy and without Down's.

I also used to work with children with developmental delays. Children with Down's may have some heart problems but are otherwise very healthy. They can also develop normally physically and mentally. Has anyone heard of a wonderful young man called Chris Burke?

V. P.

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A.E.

answers from Memphis on

It really depends on what test she had done. My sister had a test with her last child where they measured fluid at the back of the neck. I am not really sure what this test is called, but she was told that the amount of fluid indicated that her baby was probably going to be DS. She started seeing a high risk OB and did not do an amnio. A certified ultra sound tech redid the test and everything was fine. She now has a very healthy 9 month old. Hope this helps. I will be praying for your sister!!

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J.W.

answers from Dothan on

My cousin went through a similar experience recently. She had some blood work done the first of December that showed her child had a 1 in 34 chance of having Down Syndrome. The day after Christmas she had more bloodwork done and when it came back, EVERYTHING was normal! When she had the first done, she had been sick so we have wondered if that skewed the results. (I'm not sure if she ever asked the doctor about that.) I pray that everything will be okay for your sister and her baby as well.

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K.B.

answers from Johnson City on

I do agree with several other moms, these tests have a very high false positive rate. If the test is not done at exactly the right time in pregnancy the markers can be off. I also had a high AFP with two pregnancies and my children are healthy and happy. We did not go as far as the amnio because my OB told me there was a higher risk of something happening during the amnio then something being wrong with the baby. We did a repeat AFP and it was normal. God Bless your sister and baby, I will keep them in prayer. Please let us know how she does.

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M.L.

answers from Memphis on

when i was 37 and pregnant with my first, the triple screen blood test came back indicating a high risk of down syndrome. it was extremely scary for me and i had to wait about five days before i had the ultrasound and met with a genetic counselor. we met with the GC and based on info we gave him, he thought that the test was probably a false positive (which is not uncommon).

we proceeded with an ultrasound with a high risk specialist and he told us there are some very specific physical markers for down (can't remember them all, but things like a bone in one finger being longer or shorter, a thickness in the back of the neck; not the typical things you think of with down). as he checked each thing, he'd say "babies with down usually have 'blank' and this baby doesn't have that." it was very reassuring and we opted not to do an amnio based on that information.

my daughter is now almost seven and she reads at a 4th grade level. with my second daughter i had a more advanced test that was both a blood test and an ultrasound to measure the nuchal fold (the thickness at the back of the neck). that test came back negative for down and she too is a healthy, happy kid.

so i wish your sister the best. i think she'll get more info at the ultrasound.

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K.S.

answers from Fayetteville on

The triple screen test (which it sounds like this was) has a very high false positive rate. I am not even sure why they still use the silly thing b/c it sure sends panic through alot of parents for no reason. Hopefully, this is the case with your sister, and her wee one is fine.

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A.J.

answers from Alexandria on

I had the downs blood test done (quad test) and it came back positive for downs. I was 36 when the test was done. My doctor said everything would probably be fine. I still went ahead and had the amnio done which showed that the baby was fine. My baby girl was born healthy. The amnio helped ease my mind and kept me from worrying the rest of my pregnancy.

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L.L.

answers from Nashville on

I have not personally had that experience but I do have a friend that had a positive result for downs. Her son is 4 now and he does not have Downs.

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E.

answers from Fayetteville on

When I was pregnant with my 4th baby at the age of 35, my alpha feta protein test came back abnormal. There was supposedly an extra chromosome. Basically, the baby would not survive. They ordered the amnio immediately. Then we waited the painstaking 19 days for the results. It was the longest 19 days of my life. When the doctors office finally called and said the results were normal and that a lot of times the afpt test can be wrong with a woman of my age. HA, MY age!! Well, we were very relieved just the same and now have a healthy, busy, 20 month old son...I pray that the same goes for your sister. Good luck...

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L.H.

answers from Nashville on

This is covered in a talk we had at the Vanderbilt Kennedy Center last week. He talks about the chances based on what kind of test it was. You can access the podcast of the talk at this link: http://www.vanderbilt.edu/news/releases/2008/2/1/podcast-...

Podcast: "Compassionate Delivery of a New Diagnosis to New and Expectant Parents of Children with Down Syndrome" 2-1-2008
Listen to Dr. Brian Skotko's Jan. 31 presentation at the Kennedy Center.
In this presentation, Dr. Brian Skotko reviewed the results of his research on how physicians deliver a prenatal and postnatal diagnosis of Down syndrome. The presentation included highlights from his publications in Pediatrics and the American Journal of Obstetrics and Gynecology and included "take-home" recommendations on how physicians can more effectively and compassionately deliver difficult news to new and expectant parents.

To get a DVD of the talk, contact: Amy Pottier, ###-###-####
____@____.com

The Down syndrome Association of Middle Tennessess can also answer that question.

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N.H.

answers from Fort Smith on

A good friend of mine has a beautiful, perfectly healthy 1 and a half year old boy and is currently pregnant with their second. The first child's alpha-fetal-protein test came back with slight odds of the baby having Down Syndrome. They did an ultrasound and watched it closely, but the baby is perfect! The second one's test results were more significant than the first one's were and so they were sent to Little Rock to have an ultrasound done with a Level 2 machine. Th tech was great and very knowledgeable and assures them everything looks perfectly normal. (They also were able to find out 3 weeks earlier than usual that it's a girl!)The tech told them that many mothers miscarry after having an amnio done and so he wouldn't recommend it except for extreme cases. Even then, I would use great caution before opting to have it - unless you are planning to terminate the pregnancy if the amnio reveals something wrong, the risk is too great and it DOESN'T FIX ANYTHING! Good luck - I know this is very unnerving, but there's really not much you can do except be prepared!

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K.B.

answers from Jackson on

Yes, My niece. Her son is now 2 months old and perfectly fine except that he weighed 10 lbs at birth and still growing. Dr. says hes fine.

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J.C.

answers from Baton Rouge on

I have heard of this MANY times! I did not even get the test done because it has a high rate of false positives. Then the mother is worried and is willing to do the amnio, which can be dangerous for the baby! More likely than not (unless your sister has risk factors...high maternal age, etc.), her baby is just fine! We will keep you in our prayers...please let us know!

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R.P.

answers from Memphis on

If it was the AFP test (Alpha Feto Protien), there is a good chance that it is a false positive. My OB even told me that if something came back positive in mine to not worry because it happens all the time and usually nothing is wrong. This also recently happened to someone I know and the baby is completely healthy.

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H.L.

answers from Nashville on

dear D.--how far along is yr sister? there's an ultrasound test to measure "nuchal translucency" which is pretty reliable for identifying down syndrome. the triple screen blood test has a high false positive rate. if the baby does have down syndrome, there's lots of useful information & support available.
take care, H. lu

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M.

answers from Birmingham on

This is likely the AFP triple screen test, which tests for Downs and other chromosomal disorders. There are an overwhelming number of false positives. My first baby came back as a false positive for Trisomy 18, and he is perfectly healthy! I would say there is nothing to worry about at this point - the amnio will tell her for sure if anything is wrong or not.

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K.L.

answers from Knoxville on

D.,
I am the proud mother of a 7yr. old with Down syndrome. I did not opt for any of the tests they offer during pregnancy so I did not know in advance. And the reason being is because (like your sisters did),my Dr. told me that they do have a lot of FALSE positives & negatives with the test. I didn't want to worry during my pregnancy (since I wouldn't have an amnio). I'm not sure where you all live but you can see if you have a local Down syndrome Support group and maybe find someone that way. I am active with our group here in Knoxville,Tn and have met many BEST friends. Any way I can help I will gladly help. You can contact me at ____@____.com subject:Down syndrome K.

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R.M.

answers from Chattanooga on

Yes, a friend of mine had a false positive on her test, and that sweet baby boy does NOT have downs. He is very healthy, very active, and there is not a single thing wrong with him. hope this helps and encourages you!

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C.V.

answers from Chattanooga on

I have a Down Syndrome child (actually, he's a teenager now--16 on Christmas Eve); but did not have the amnio because I feared the baby might move and be punctured in a bad spot by the needle. Just call me chicken! LOL!! I knew anyway that no matter what, I wanted this child and did not see the amnio as anything necessary because of that. I was not aware that it could now be done with blood tests--wow, modern technology! I was an older mother, didn't get pregnant for the first time until 36, had my first child at 37, and wound up pregnant again 5 months after the birth of my first! I found that pretty funny since I'd tried for 20 years to get pregnant--became a rabbit in my old age--LOL! I did not suspect Down Syndrome, but upon delivery, the doctor told me they had reason to suspect my baby, Harold, had it by many signs they saw when he was born, i.e., the APGAR score at birth, ears set a bit higher on his head, had an extra thumb growing out of his thumb (which was taken off before he came home), etc. He was born Christmas Eve and taken to intensive care, since the hospital suspected maybe heart problems, sleep apnea, he had jaundice, etc. I was let out Christmas Day, but he remained another week--hardest thing I ever did was have to leave him there! Fortunately, at the end of his stay, they found no heart problems, no sleep apnea (just a low resting heart rate), and we brought him home and loved him so very much. To have a child like this on the one hand is hard when you see other children his age doing the things he should be doing on "time"; but on the other hand, he is such a joy--he doesn't worry about the things we worry about, he's got the best nature and he's pretty much always happy! I feel so fortunate God blessed us with him and we all find him very interesting and he is much loved and doted on! His older brother who is 17 has never been ashamed of him and he's always brought a lot of friends over and introduced them to Harold and Harold enjoys being around everyone. The other teenagers are so good with him and kind to him, and look out for him! It's been a wonderful experience for all of us to watch Harold growing up. I don't know whether a blood test can be done to tell whether Down Syndrome is present in the child she carries; but if it's found out she is pregnant with a Down Syndrome child, please let her know it's not the end of the world--she'll be surprised at the joy and love she feels for this child and hook her up with me--my email is ____@____.com if I can help her get through this or offer any support. Good luck!

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T.A.

answers from Little Rock on

I am with all the other ladies, those test are false alot. They always told me that when they offered them. I chose not to do it, just be cause I didn't want to go thru all of the emotions of a bad test! Prayer however never hurts, so I will say one for her.... :)

Blessings
T.
www.EnhancingYourWayOfLife.com

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D.B.

answers from Nashville on

I had a positive result with the Alpha-fetoprotein test that was done. I did follow up by having the amnio as well. The results were negative for Down's.

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K.P.

answers from Memphis on

These prenatal tests are not very accurate. Don't worry about it. There are numerous documented cases of babies diagnosed prenatally as having a certain disease or condition, only to be born perfectly fine. There are also known cases of women who chose to have an abortion, only to find out when it was too late that their babies were perfectly fine. One lady had a very detailed u/s at 37 weeks, and her baby was given a clean bill of health--no Downs, and no heart problem, and then the baby died in utero of that heart problem she supposedly didn't have, and was obviously affected with Downs. So if an u/s that late can be inaccurate, an u/s early in pregnancy is likely to be worse.

However, if the baby does have Down syndrome, here is a website somebody sent to me lately that offers some hope: www.michaelfund.org.

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J.H.

answers from Huntsville on

I have known of a friend in TN that had a positive test and the test was not accurate. The baby was fine. Also know that if this baby does have Down's Syndrome, they can learn and function as do other children. Children with Down's are very loving. They are capable of living a good life and being successful in many ways. Please also know that God does not put more on us than we can handle. My thoughts and prayers are with you and your family. Give it to God and He will take care of it in the way that is best for all concerned.

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A.

answers from Jonesboro on

It sounds like she just had a triple screen (AFP), quad screen, or possible one of the newer options (sequential screen, etc.). These are just screening tests; getting a "positive" result just means an increased risk - not that there is actually a problem. They are probably going to do a level 2 ultrasound to look for markers that might indicate Down syndrome or other problems.

It is really hard not to worry, but these tests are just screening tests and most don't end up meaning anything. Hopefully this will be the case for her. I had a positive triple screen/AFP with my daughter, but they didn't find any problems on the ultrasound and I declined the amnio because of the potential risk (even though it's low). She was fine.

By the way, because it's a "screening test" for increased risk and not a test for the disorder, it's not really possible to have a false positive or false negative result.

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