Broken.......

Pepper5712 · November 2011

Hey ladies...haven't been on in a few days. That stupid shingles scare with my cousin is nothing compared to this.

My OB called me an hour ago to tell me my results for the quad screen came back. Spina Bifida was great 1:52,343...but Down Syndrome not good. My odds are 1:175. They want me to have an amnio. I don't know what to do. I am so upset, can't stop crying. The thought of having an amnio is driving me nuts. What if this is a false positive? I don't want to risk the pregnancy with this test if there is really nothing wrong with my baby. I'm so distraught.

LilMonster2 · November 2011

I'm so sorry you are dealing with this. I am still waiting to hear about mine and i'm so nervous. Remember, it isn't a positive! It is certaibly not even the highest risk I have seen where things have been fine. The amnio will likely provide assurance, but just because you got that number does not mean your baby is the 1.

stemms8810 · November 2011

I'm so sorry you didn't get good news. I hope it's a false positive.

lindy27 · November 2011

Sorry you have to be dealing with this. Can they look for markers of down syndrome on you a/s in a few weeks? I have heard of lots of people not getting the amnio done but if you want to ease your mind it is a good way to do that. Just remember those odds are a 99.4% chance that your baby is healthy!

maybayb25 · November 2011

lindy27:

Sorry you have to be dealing with this. Can they look for markers of down syndrome on you a/s in a few weeks? I have heard of lots of people not getting the amnio done but if you want to ease your mind it is a good way to do that. Just remember those odds are a 99.4% chance that your baby is healthy!

This

So sorry you have to go through this!

ELF4321 · November 2011

I know 1:175 sounds scary, but really it's less than a .005% chance. That's still a 99.995% chance that everything is fine. Were your NT results better than the Quad screen? It's actually more accurate than the second tri bloodtest, so it might help to inform your decision better.

lovetohike · November 2011

((hugs)) I screened positive for Downs Syndrome too. I found out yesterday and cried all day. I don't know my exact odds and won't until I go to the Perinatologist in 2 weeks. It was so unexpected. I completely understand what you are going through. I am in the thick of it myself. I am doing the level 2 ultrasound and am still not sure what to do about the Amnio. It is suggested for me as well. Hang in there and I am so sorry for your scare.

Pepper5712 · November 2011

ELF4321:
I know 1:175 sounds scary, but really it's less than a .005% chance. That's still a 99.995% chance that everything is fine. Were your NT results better than the Quad screen? It's actually more accurate than the second tri bloodtest, so it might help to inform your decision better.

These were the results from the second tri test. NT scan and bw came back as 1:9000.

ELF4321 · November 2011

Pepper5712:

ELF4321:
I know 1:175 sounds scary, but really it's less than a .005% chance. That's still a 99.995% chance that everything is fine. Were your NT results better than the Quad screen? It's actually more accurate than the second tri bloodtest, so it might help to inform your decision better.

These were the results from the second tri test. NT scan and bw came back as 1:9000.

Hmm .... honestly, I'd be tempted to not do the amnio given how strong your NT result were. My OB actually doesn't even order the Quad Screen if you have good NT results, just the AFP test. Can they get you in for the anatomy scan right away at 18 weeks? That might help to clarify if there are any signs of a problem that might make amnio a good idea.

Pepper5712 · November 2011

ELF4321:
Pepper5712:

ELF4321:
I know 1:175 sounds scary, but really it's less than a .005% chance. That's still a 99.995% chance that everything is fine. Were your NT results better than the Quad screen? It's actually more accurate than the second tri bloodtest, so it might help to inform your decision better.

These were the results from the second tri test. NT scan and bw came back as 1:9000.

Hmm .... honestly, I'd be tempted to not do the amnio given how strong your NT result were. My OB actually doesn't even order the Quad Screen if you have good NT results, just the AFP test. Can they get you in for the anatomy scan right away at 18 weeks? That might help to clarify if there are any signs of a problem that might make amnio a good idea.

I was just thinking the same thing....I am going to call them tomorrow to see if they will do that. Not that this really matters in the grand scheme of things, but i'm only 32, don't smoke and I don't do drugs. I don't understand. Can they do the a/s at 18 weeks? I'm really surprised they wanna jump the gun and do an amnio right away with all of the risks involved.

ELF4321 · November 2011

Pepper5712:
ELF4321:
Pepper5712:

ELF4321:
I know 1:175 sounds scary, but really it's less than a .005% chance. That's still a 99.995% chance that everything is fine. Were your NT results better than the Quad screen? It's actually more accurate than the second tri bloodtest, so it might help to inform your decision better.

These were the results from the second tri test. NT scan and bw came back as 1:9000.

Hmm .... honestly, I'd be tempted to not do the amnio given how strong your NT result were. My OB actually doesn't even order the Quad Screen if you have good NT results, just the AFP test. Can they get you in for the anatomy scan right away at 18 weeks? That might help to clarify if there are any signs of a problem that might make amnio a good idea.

I was just thinking the same thing....I am going to call them tomorrow to see if they will do that. Not that this really matters in the grand scheme of things, but i'm only 32, don't smoke and I don't do drugs. I don't understand. Can they do the a/s at 18 weeks? I'm really surprised they wanna jump the gun and do an amnio right away with all of the risks involved.

The a/s can be done anytime between 18-22 weeks (although I read between 18-20 is best). I think doctor's just like to have a 100% answer, which you could get from the amnio, but don't necessarily think about the stress it puts on you. Good luck with getting the a/s done.

blueshamrock7 · November 2011

You don't *have to have an amnio! If you don't want one and it doesn't matter what the results show, then I wouldn't do it. I think I got similar NT odds so I discussed with my doctor and she with those results, she would feel comfortable with just sending me for the AFP blood test. ((((( )))))) Hang in there!!

Pepper5712 · November 2011

Thank you

Pepper5712 · November 2011

lovetohike:
((hugs)) I screened positive for Downs Syndrome too. I found out yesterday and cried all day. I don't know my exact odds and won't until I go to the Perinatologist in 2 weeks. It was so unexpected. I completely understand what you are going through. I am in the thick of it myself. I am doing the level 2 ultrasound and am still not sure what to do about the Amnio. It is suggested for me as well. Hang in there and I am so sorry for your scare.

Thank you...you too sweetie. This really sucks. Even if my child is born with Down Syndrome, I will still love him/her the same. I just hate feeling like I have no control. I'm not scheduled for my a/s until 12/21 there is no way I am waiting until then.

Pepper5712 · November 2011

blueshamrock7:

You don't *have to have an amnio! If you don't want one and it doesn't matter what the results show, then I wouldn't do it. I think I got similar NT odds so I discussed with my doctor and she with those results, she would feel comfortable with just sending me for the AFP blood test. ((((( )))))) Hang in there!!

I know I don't have to, and I am seriously leaning towards no. I wld rather have them check further at my a/s. Then take it from there. Thank you!!!!!

BTW....hope everything goes well with ur surgery T&P's

blueshamrock7 · November 2011

Pepper5712:

I know I don't have to, and I am seriously leaning towards no. I wld rather have them check further at my a/s. Then take it from there. Thank you!!!!!

BTW....hope everything goes well with ur surgery T&P's

Thank you so much :-) Good luck with everything. I hope everything turns out just fine with you & your LO!!!

JennyJensing · November 2011

FX that it's a false positive!

pkfld82 · November 2011

I am sorry and I know this is scary. My cousin had almost the same results. 1:200. Her baby came out extremely early at 28 weeks, but no down syndrome. I will be praying for you. Was this your 16 week blood work?

Pepper5712 · November 2011

JennyJensing:
FX that it's a false positive!

U really think so? My OB made it seem like I HAVE to get the amnio done right away. WTF? Why do they do this to us?

Pepper5712 · November 2011

pkfld82:
I am sorry and I know this is scary. My cousin had almost the same results. 1:200. Her baby came out extremely early at 28 weeks, but no down syndrome. I will be praying for you. Was this your 16 week blood work?

Yes this was my 16 week blood work. Is ur cousins baby ok?

jbeck78 · November 2011

Dont really have much infor or advice, just wanted to say that I am sorry you are going through this and I hope everything is okay.

jnicolen1 · November 2011

you dont HAVE to have ANY test. if you know you would keep the baby either way, then you dont need the test.....especially because there is a risk of miscarriage.

good luck...will be thinking good thoughts for you.

mrs+harlow · December 2011

ELF4321:
Pepper5712:

ELF4321:
I know 1:175 sounds scary, but really it's less than a .005% chance. That's still a 99.995% chance that everything is fine. Were your NT results better than the Quad screen? It's actually more accurate than the second tri bloodtest, so it might help to inform your decision better.

These were the results from the second tri test. NT scan and bw came back as 1:9000.

Hmm .... honestly, I'd be tempted to not do the amnio given how strong your NT result were. My OB actually doesn't even order the Quad Screen if you have good NT results, just the AFP test. Can they get you in for the anatomy scan right away at 18 weeks? That might help to clarify if there are any signs of a problem that might make amnio a good idea.

My thoughts exactly. Thank God you did the NT scan. Thoughts and prayers to you as you make your decision.

mrs+harlow · December 2011

jnicolen1:
you dont HAVE to have ANY test. if you know you would keep the baby either way, then you dont need the test.....especially because there is a risk of miscarriage.
good luck...will be thinking good thoughts for you.

FYI - finding out if your baby has a chromosomal abnormality or not does not mean you would terminate. It drives me bananas when people say this to other women!

JNoelleE · December 2011

Honestly, 1 out of 175 does not seem like high odds to me. I think it's reasons like these that some people choose to not have any testing done. Worrying this hard and considering doing a procedure that has risks, seems more risky to me than those odds. I'm not trying to sound judgemental, really, I'm just trying to be honest and give you some perspective. My sister had her spina bifida come back 1 in 130 and her baby was completely healthy. Those tests are not always accurate. I'm sure you and your baby are perfectly healthy.

fryrat · December 2011

At least the odds aren't 1:2. My T& are with you. If you wouldn't terminate, don't do the amnio. It's risky for you and the baby.

lovetohike · December 2011

So my Dr. referred me to the Perinatologist. I called the Peri and they scheduled the level 2 US. I am having it in 2 weeks.. I will be almost 17 weeks at the time, They are doing it at the Pernatologist's office and right after the Perinatologist is meeting with us to discuss the results and we will discuss the pros and cons of an Amnio then. If we chose to have an Amnio, we will schedule it then.

Perhaps you can call your Dr. for the referral to the Peri. go there and get the Level 2 US a bit earlier then decide. The Level 2 US will tell you if there are other soft markers for Downs. At the office I am going to they give me the Level2 results right away.

Again, I know how stressful this is... the not knowing it the worse. I wish they could have just said "yes" or "no" so I could prepare either way.

Hang in there and try to see if you can get into a Peri before Christmas!

lovetohike · December 2011

I guess I want to add for those who say the odds are good etc... yes, they are better to have a healthy child BUT when your Dr. calls you on the phone and says " YOU SCREENED POSITIVE FOR DOWNS" your heart sinks no matter what the odds are. To those who haven't had the call the odds seem great.. but to hear the words. YOU SCREENED POSITIVE FOR DOWNS, it hard to hear no matter what the odds.

I guess if you haven't ever had the call from the Dr. it might be hard to understand the emotion behind the call.

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