Update* Positive/at risk for Down Syndrome AFP screening test?!!!

mommyof2naugustmommyof2naugust
edited April 2011 in Second Trimester
So I wake up to a call from my doctors office saying that I tested positive/ at risk for Down Syndrome.. & she didn't tell me my percentages or anything. But here's the thing, I know the AFP test has a very high rate for false positives which is exactly why I DID NOT want the freakin test in the first place but I guess they did it anyway. So now I am so stressed & that's all I can think about, I found out yesturday & i've been devastated since. Honestly though I really think my little girl is fine, she's very active & all her u/s measurements have been perfect. (I'm 21weeks 1d) I know this happends a lot, & I will love my little girl either way but what the heck is the point of this stupid test if there is such a high false positive rate?! I really don't want an amniocentesis, i'm scared.. I refuse to do it. Anyone else had this happen? I guess I just need some reassurance that my baby girl is going to be fine. (Btw i'm only 20, so I know i'm not a high risk) but i'm still a nervous wreck. Help please?!

Update***
The hospital just called.. My results were 1 in 95, just waiting for a call back to schedule an ultrasound.

UPDATE: Went to the hospital & had a meeting with a genetics counselor. My results were 1 in 95 & for my age should be around 1 in 200 so a little high. Had an ultrasound & everything looked fine & normal but I went ahead & did the amnio just to know for sure.. results in 7-10 days.

Comments

  • Jaime77Jaime77
    I've never experienced false positive. My doc did the opposite. Up until I was 31 weeks we thought my baby was healthy. He passed away @ 2 days old. My suggestion trust ur instincts. I'm sure your baby girl is perfect!
  • NeekNeek
    I think this has happened to someone else on here and their baby was fine.... don't worry 1 its a risk not guaranteed 2 alot of false positives ..... the odds are not against u.... and if all the measurements are fine then I think tht she is okay....
  • georgias_mummygeorgias_mummy
    Awww hun I'm sure u and your baby will be fine either way and she will be perfect whatever the outcome, I'm only ttc but I've already decided I don't want that test as I will still love the baby either way the only plus side is that it gives u a chance to look for resources (help etc) but with the high amount of false positives its pointless anyway so to be safe than sorry just research for help u can get then if she does have downs then your ready :) gl and be strong everything will be ok sorry I don't have more help but if u have fb look for a group called little mirracles my mate runs a group for disables children etc and would be good to talk too :) xx
  • RTMommyRTMommy
    Downs babies have a thick fat pad on the back of their neck, and docs look for that on US around 20 weeks. If they haven't been concerned looking, try not to stress the AFP. Like the other ladies said, it has a really high false positive rating. Besides, you'll love her reguardless. :)
  • grnfish73grnfish73
    @ mommyof2naugust I had a false positive (I'm 21wks and 38yrs old) everything was fine until that damn blood test. My gut told me I was fine buy my doc, who I trust said to get the amnio. I went through the amnio more scared of the procedure than the outcome. The amnio was not as bad as I thought. I actually didnt even feel it. The worse part was the 24hrs of bed rest and the cramping. Not that it hurt but thinking is the cramping from losing the baby or just the expected cramping. 2 days later the doc calls with the results!!!! Good News and Bad News (As I called it) The test was fine (no downs) annnnddddd Its a GIRL!!!! That was the bad part (JOKE) I was expecting a boy. I have 2 already. Everyone told me not to get the amnio done if the outcome didnt matter in my decision of keeping it. And it didnt matter but I needed to know for sure so I could get informed and educated on what I was in stored for and what resources I had to help me through it. Thats my experience with what you are going through. I'm due 8/3 how about you?
  • caitiecakescaitiecakes
    This happened to my best friend when she had her third baby...they worried for 20 weeks and prepared for a baby with downs..guess what..baby had no downs.
  • mommyof2naugustmommyof2naugust
    Thanks ladies! I'm doing my best not to stress about it since it could be nothing. Just waiting for a call from the hospital so I can go in & do some extensive testing. I'm Pissed though, I specifically told my doctors office I didn't want the AFP for the fact of the very high false positive rate.. come to find out this happened to three of my aunts, which all have perfect healthy children now :) So that gives me hope, I know my baby girl is perfect :X thanks again ladies for the kind words & positive thoughts :) means a lot to a stressed out worried hormonal mommy :p
  • HeibesHeibes
    They're not supposed to call you up and tell you that. Geez. They're supposed to administer another test just because false positives are so common with those tests. Find out if they were using the most recent testing methods. I've heard of offices using outdated methods. Best to get a second opinion elsewhere.
  • [Deleted User][Deleted User]
    The user and all related content has been deleted.
  • antjulesmomantjulesmom
    My last pregnancy my results came back with a 1 in 30 chance of having a baby with downs. I was a wreck..not because i wouldnt love that baby any less, but because i already had a son. Having a child with downs can be hard on siblings. I opted to have the Amnio & 14 agonizing days later i was told that my little girl was PERFECT! Now, here we r again & my 1st trimester screening says that i am at an increased risk for downs. My amnio is 4/19..... [-O<
  • mommyof2naugustmommyof2naugust
    @grnfish73 Thank you, that does make me feel better. I'm sure its just another false positive, like I said all her u/s measurements have been perfect. I'm going to request another u/s be done before I go ahead with an amnio, i'm so scared.. not just for the procedure but the fact that there is a possibility of mc afterwards even if its only a 1% chance the thought still scares me. Ugh, i'm just so mad that they went ahead & did the test anyway, smh. I'm due 8/12 but i'm having my baby girl 8/5 via c-section.
  • grnfish73grnfish73
    @mommyof2august me too. I'm having a c-section on the 5th also. My first 2 were c-sections. No chances of you being in NYC? I'll send you a shout out that day for good luck!
  • mommyof2naugustmommyof2naugust
    @antjulesmom They didn't even tell me what my results were, should I call & ask? Ugh, the way the nurse worded it she made it seem like my baby for sure had downs, I was a mess all day yesturday. I too have a son, & that is also the reason i've been so stressed & upset about it.. Even though my hubby & I would love her just the same :X I want to find out my results & have another u/s done & then I guess I will go ahead with the amnio. I'm just such a worry wart. Good luck Momma, I am sure your baby is absolutely perfect :)

    @grnfish Oh how crazy, our babies will have the same birthdays :) This is my second c-section, i'm so nervous.. my first was really hard on me. I wanted to try V-bac this time but my doctor told me no. Was your second easier than the first? I'm actually in Cali.
  • TechGirlPaTechGirlPa
    My Dr told me its not accurate and just a measurement on whether you're higher risk or not.. that's it.
  • LeviLuv8LeviLuv8
    @KerrideeRN do you still have your children with downs?

    @mommyof2naugust if you are weary you could always do that 3D or 4D ultra sound. If the baby did have downs its facial characteristics would show on it!
  • grnfish73grnfish73
    @mommyof2naugust the second was easier than the first. But the gas (TMI) was worse. LOL! I had to have them back to back becuz my boys are 17 months apart and he was afraid my body wasnt healed enough. About the Downs Test My doc told me that he thought my result came up pos becuz of my age(38). It was 1/151 and the cut off for my age was 1/147. You should really find out the result and the cut off for your age. Now, I have heard horror stories about the procedure (no MC stories) just how bad it hurt but I didnt have the experience. I guess it depends on the doc.
  • [Deleted User][Deleted User]
    The user and all related content has been deleted.
  • magcawmagcaw
    @jaime77 i'm so sorry, that's horrible. :( @kerrideern--do you have other children besides your little boy on the way? and did you decide to get tested for downs this time or with your others? i can't imagine what it was like to have a child with downs at 15.

    as far as the screening, like everyone has said, it's just that there are certain red flags in your blood that you may want to look into. i know a woman who had the same result, had the amnio, and suffered a miscarriage of her daughter, who didn't have downs. (i know that this is not the most common outcome, obviously, but it's a terrifying risk). i can't believe that they did the test and put you through all of this without your consent! you should complain very loudly to anyone who will listen. :(
  • [Deleted User][Deleted User]
    The user and all related content has been deleted.
  • antjulesmomantjulesmom
    edited April 2011
    @grnfish73..the amnio did not hurt AT ALL! It wasnt fun, but it really didnt hurt. The dr. laughed @me, cause once the needle came out, i said " oh good, now i. can breathe" He asked who told me i couldnt breath during thr procedure...i told him no one, but the thought of breathi g with a big old needle in my stomach scared the shit out of me!!

    @mommyof2... i dont think its worth it to find out ur numbers. Its only a screening test and it just makes u that much more nervous. Good luck!!
  • Kmose77Kmose77
    I'm Sure your baby is great. Dont freak out. Those tests are silly I think. It's only to say you may have a chance.. And I have a co worker who had the amnio done, found out her baby was fine then miss carried. Your doc never should have told you I'f you didnt want the test. Thats why it's optional. Not trying to scare you. I'm sure you're baby is perfect. They make a ton of money off those extra procedures. If it were me id just wait it out. But thats a personal decision, but sounds like they just have you all scared over nothing. About 40% of those tests come back posative. With healthy happy babies!!
  • rachdbrachdb
    Hey hon my best friend had the test and they told her the same thing. Her lil boy is 14 months healthy and doesn't have down syndrome. I know its easier said then done but try not to stress its not good for u or ur lil girl. Hope everything turns out fine
  • okmomokmom
    I'm having the same problem n I'm not gonna do the amnio cuz I don't want to lose the baby n I have a girl she look so beautiful n healthly it my age that the make the risk higher like 1 in 398 but I think she look so perfect I'm due in July. Just do what u think is right4 ur self n the baby!
  • yazmin31yazmin31
    Hi ladies I went like 3 weeks ago for my first ultrasound for the nuchal scan and the doctor talk me my baby neck is a lil big the a normal baby neck my is 3.1and a normal baby is 3 so this is a change my baby comes with down sindrom and my blood test is 1/50 so we don't now for sure I am so sad cause i never expect something like this I am 25 please some one in the same situation
  • KingsmamaKingsmama
    @yazmin31 I'm 26yrs old and when I had my much done the fluid was at 3.2 so I got the cvs done 4 days later. When they did it his fluid was down to 2.8 and the results came back normal so don't worry hun :) if its been 3 weeks and they haven't told u the results by now they should be normal too.
  • yazmin31yazmin31
    @kingsmamas Thank u so much I hope everything is good at my next ultrasound thank u for u answer I feel much better
  • blueberrysmomblueberrysmom
    Can you get the nuchal scan and not get the amnio? The amnio scares me. X_X
  • mommyof2naugustmommyof2naugust
    @blueberrysmom it scares me too! So that's what i'm hoping, but they still haven't called me. If not i'm just going to have another regular ultrasound done and go from there
Sign In or Register to comment.

© Vanilla Keystone Theme 2024