First Freak out- DS test positive

LaurenandMack · May 2009

My doctor just called me and my blood test for Down Syndrome results just came back postive. She said this is common. Now I have to talk to my husband about the amniosentesis and the risk of miscarriage by having it. Can anyone help? Has this happened to anyone? I can't stop crying and my husband is on his way home from work. Am I overexaggerating? I am NOT an emotional person, so this is so strange to me! Help!

PurplePeep · May 2009

I don't have any real advice, but I'll be thinking good thoughts for you and your baby. *hugs*

k_leigh_d · May 2009

Honey - I have no experience, but I will be praying for all of you.

jms08 · May 2009

The doctor said its common, so I wouldn't worry too much. and I don't think the amnio is as dangerous as people make it out to be JMO. Good luck, I hope everything turns out well.

browneyes_24b · May 2009

::hugs::

I'm wanting to lend my support to you. There are many babies that are diagnosed with positive results that are born healthy. You are not over exaggerating, you have every right to feel scared, but you will find support here if you need it!

OSUtiff · May 2009

What test? Was it your AFP test? If so, calm down (well, try anyhow). My test came back that way, too. And after a meeting with our doctor, an u/s, and a meeting with a geneticist, everything looked normal.

If it is not your AFP test and it is another test, then just talk to your doctor about possible avenues. I knew I did not want an amnio because of the rick of miscarriage (and the idea of that needle is very scary) but there are probably many options, so just try to relax for now. Please keep us updated, and use us as support. I did when my AFP tests came back...

besszilla · May 2009

Everything about being pregnant makes you emotional, its okay.

Which test was it? My understanding is that these blood tests are an indicator of risk, not a diagnosis.

Mrs.DeliaMarieP · May 2009

First, I'm terribly sorry that this is happening for you.

Second, did you just have the blood draw for AFP, or did you have an actual NT Scan Ultrasound?

Third, how far along are you, and when is your Big u/s scheduled for?

beccabrad · May 2009

how far along are you and what test?

If your talking about the Quad screen... there are sooo many false positives and it doesn't mean anything.. it just means you could have markers for DS. Your dr. should refer you to get a level II u/s and they can check for actual markers and then look into it further.

I got a positive and everything is fine. Just try to relax.. I know it's hard but the Quad screen really only measures chemicals in your blood and if one or more of the chemicals isn't within the normal range.. it comes back positive.

hang in there.

MrsBro6116 · May 2009

besszilla:
Everything about being pregnant makes you emotional, its okay.

Which test was it? My understanding is that these blood tests are an indicator of risk, not a diagnosis.

Try to remain calm. I know it's a lot to take in.

Which test did you have done?

kjonesy75 · May 2009

Did you have the quad screen? My quad screen came back with a 1 in 42 chance of down syndrome. Very scary! We got this news about a month ago when I was 14 weeks pregnant. I then went for a level 2 ultrasound and the only things they noticed was that the baby's head measured 6 days behind and the femur measured 10 days behind. They couldn't tell me what that could mean. I met with a genetic counselor the same week and we decided for an amnio b/c I just need to know either way. My amnio was on Friday and was fine. Just a little pinch and the needle was out in about a minute. Not bad at all. The worst is the waiting. The results take 10-14 days. I will hopefully know on Monday. Hope this info helps. Good luck with whatever decision you decide to make.

iris427 · May 2009

Listen, your baby DID NOT test positive for Down Syndrome. The test said you had a higher probability for it. Odds are still very good that your baby does not have it.

The only way to know for sure is through the amniocentesis. GL, I hope you get good results.

armywife4ever · May 2009

Did your doctor tell you what the odds are? Usually the tests will give you odds. The amnio is something you and your husband are going to have to decide on. Weight the risks and possible outcomes.

But here is some food for though. Are you going to think of this baby any different if you have the amnio and it does come back positive.

LaurenandMack · May 2009

Thanks guys! The sniffles have slowed down. Yes, it was the blood test which makes it just a risk test not a diagnosis. But it is still so scary. It is great to hear from PP that I don't have to get the amnio test. It sounds too scary. My dr did say something about genetics testing, but I was so upset I could only repeat about half of what she said. My husband is calling her now. Thanks guys, wow! I need to come on here more often, you just calmed me down big time! I will keep you guys posted for sure. Now if I could get rid of this darn headache!

collinjenn · May 2009

The results of my AFP came back with and increased risk for DS, but after a lot of worry and an amnio (which really was much easier than I thought it would be) everything with our little girl is just fine. Please try to stay positive. A lot of people get these results and it turns out that their babies are in perfect health.

Daniella4 · May 2009

You aren't overexaggerating. The Idea that something is possibley wrong with your child is very scary. The 2 weeks of waiting to find out if my husband was a carrier for cystic fibrosis after I found out that I was, was the longest 2 weeks of my life. I cried everyday. So I can relate. The only advise I can give is to try and stay positive and its okay to feel scared and to cry. Also the test doesn't always mean it's 100% either way. A friend of mine didn't test positive, but her baby was born with Downs syndrome and that little girl is a true blessing to them. I am saying a prayer for you now! GL!

jmubride2 · May 2009

I say don't do the amnio! One of my students mother's had an amnio and she miscarried at 21w. I know they can do other things later on with u/s. They measure everything again and look at the heart etc.

LaurenandMack · May 2009

I know I need to add my info on here- it is my old info from the knot.com. I am 12 weeks and due on Nov. 12. You guys are correct, I should not have put "POSITIVE" when the screening was positive, not the actual diagnosis. They did not give me odds, but I called my husband and asked him to call back to ask. Wow, I feel so much better. Thank you guys SO MUCH!

Mrs.DeliaMarieP · May 2009

With it just being the blood test, there is a high false-positive rate.

They will have to do the Level 2 ultrasound to do an actual nuchal translucency measurement, which will give a better idea of the actual chances of Down's Syndrome.

If that also comes out positive, then they would probably want to do the amnio.

For me, personally, because the AFP results are relatively inaccurate, and weren't being done in conjunction with an ultrasound, we opted against the bloodwork. I knew that I wouldn't change anything if the baby did have Down's, since they cannot tell severity. I was more concerned with other abnormalities (like Spina Bifida), which are picked up on at the "Big" ultrasound and are generally much more severe than Down's Syndrome. They will also look for that when you have your Big ultrasound.

I am glad that you are calming down, and please keep us informed on how this all turns out. You will be in my thoughts.

Mrs.DeliaMarieP · May 2009

jmubride2:
I say don't do the amnio! One of my students mother's had an amnio and she miscarried at 21w. I know they can do other things later on with u/s. They measure everything again and look at the heart etc.

Nothing like scaring the crap out of the girl a little bit more...

MrsJY · May 2009

The best thing to do is get more information and try and stay calm (easier said than done). Take care.

melly918 · May 2009

If it helps...my friend's son was suspected of having Down's in utero because the ultrasounds showed that he had the facial features and some intestinal issues that were consistent with Down's. He was born absolutely normal and just had the intestinal issues corrected with surgery. He's a very smart little boy right now. I hope this gives you some hope that sometimes doctors can be wrong.

iris427 · May 2009

Mrs.DeliaMarieP:
jmubride2:
I say don't do the amnio! One of my students mother's had an amnio and she miscarried at 21w. I know they can do other things later on with u/s. They measure everything again and look at the heart etc.
Nothing like scaring the crap out of the girl a little bit more...

Seriously, WTF

soontobeahigh · May 2009

I was in this spot exactly a month ago. I got the call that my NT/bloodwork came back with a high risk for DS and T18. My odds were 1:5. I freaked out and called my husband and he came home and we cried together. I had a quad screen done at 15 weeks and that came back with high risk as well, 1:45. I had an amnio done and my DD does have DS. The thing about these tests is that they are just a screening, but they do give false positives. My genetic couselor went over all these tests with us and they have about a 5% false postive rate. Another thing to consider is that yes, you can have a level II ultrasound done but, it can show the baby is looks perfect and there still be a problem. This happened to us. Also, sometimes the screenings don't pick anything up and then the child is still born with DS or something else. The only way to know for sure is to have an amnio. The risk is usually 1:200 for a miscarriage, but if you go with a dr that has a lot of experience it goes down greatly, our risks were 1:500 with our dr. Good luck and I hope you are one of the false positives, but if your not, there is a lot of support out there for you.

LeelaH · May 2009

Hi there. This same thing happened to me a couple weeks ago. My screening results came back with a 1 in 15 chance that my baby had Down's. We went in for the level II ultrasound and no soft markers were found. That brought the risk to 1 in 30. We elected to have the amnio done right then. My doctor explained the risks, but honestly acted like it was no big deal. (I was at my high risk doc, and they do a lot of amnios.) It was over in a few minutes. I got the FISH results in 3 business days and everything was normal. I'm still waiting for the full amnio results, but the FISH results can tell you whether or not the baby has Down's (and also if you're having a boy or a girl!).

The waiting is the hardest part. There are several of us on this board that (unfortunately) have been through this, so keep us updated. You will get a lot of support here. I hope you get good results from whatever testing you choose to do.

bobbydsgirl · May 2009

I am so sorry that you got the "positive" result but you should try not to worry because the chances that something is actually wrong with your baby are extremely, extremely low. I really think the AFP test should not be used because of this.

While waiting for my test results I read up on false positives and found that in 90-98% of cases of "positive" results there is absolutely nothing wrong with the baby. see https://pregnancyandbaby.com/pregnancy/baby/Understanding-the-AFP-test-4450.htm as one source of reassurance on the very high rate of meaningless "positive" results.

you will get a "positive" result if your chances of having a Down's baby is 1 in 250 -- that's a 0.4% chance of actually having a Down's baby - really not much to worry about!

If you feel you do not want the amnio - feel confident in your decision and that your baby will be born healthy despite the jarring afp result.

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