freaking out...

Just got a call from my HR Dr. and I just took the blood test (the spina bifida etc) my risk is higher ~ before my test I was 1 and 500 and something and now I am 1 in 161. We have to go see the genetic counselor and discuss our options....

anyone dealing with this or has gone threw it?

My options are do nothing, have an amnio or wait until my next appointment for my 19 week sono and they will do a more extensive test then.

I am sooo sad and scared at the same time. Please tell me this is all going to be ok

Thank you for listening.

Re: freaking out...

I do believe there have been MANY false positives on the blood test. It's not very accurate.

Honestly, if you're not going to terminate I would not do the amnio and wait for the 19 week sono. It is much more accurate than the blood test.

I'm sure it's absolutely nothing to worry about.

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My quad screening came back 1 in 128 for Downs. I had to go to the genetic counselor and I also did another more detailed Level II sono.
I opted out of the amnio and I have to tell you- at 24 weeks, I regret not doing it. The docs say that my sonos look good, etc- but there is still that part of me that would like to know 100%.

Message edited 2/6/2012 11:42:50 AM.

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hoping for the best

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I had worse odds this time than with my DS and I was honestly freaked even though my numbers were still technically ok. My doctor said I can do an amnio if I want to know for sure since that's REALLY the only way to know. I was not comfortable taking a risk (albeit a very small one) just to know since we would not terminate regardless.

I went for the followup AFP test (at 16 weeks) where they do more in depth blood testing and the numbers were still in the OK range and normal considering my age. I opted not to have the amnio.

For Spina Bifida, they can probably get a much clearer picture by the time of the anatomy scan. Personally I would wait for that and then make a decision about an amnio etc. Lots of luck!!!!

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My 1st dd they thought she had downs after that test and after I had the amnio they asked if I wanted to terminate ( before they found out the results) I said no ! The test came back ,and she was perfect ! Come to find out that most positives are false positives ! Good luck ,and keep your chin up , I am
sure your DC is fine

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If i were in your shoes I would wait for the 20 week sono. Like the pp's said this test gives alot of false positives. I am going to pray that everything is just fine

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What's the latest you can do an amnio?

If you can do it AFTER the 19 week sono, I would do that first. Otherwise- i'd get it done. I would have to know 100%.

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I would wait till the next sono.

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Praying for your LO!

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Thank you soooo much ladies!!! no matter what I am not going to terminate and I am not sure about the amnio when is the latest I could have it. We go to the genetic counselor next week, on valentine's day. It is going to be a long couple of weeks. We go for our next sono 2/27.

Thank you all for sharing with me!



I know there are a lot of false positives ~ I am trying not to worry. I had a friend and her mom was pregnant with her sister the dr said the baby had spina bifida and they wanted her to terminate and she chose not to terminate ~ she was fine, no problems at all.

Message edited 2/6/2012 2:18:22 PM.

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I had an amino so if you have any questions feel free to FM me. I think you can wait until after the 19w. GL and try not to stress there are lots of false positives with the blood tests

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Im sure everything will be just fine.

Remember that these tests are screenings and not definitive tests.

I had an increase odds with my oldest DC and everything was fine in the end.

Message edited 2/6/2012 10:00:28 PM.

Re: freaking out...

I was also doing some research online ~ I know I shouldn't but a lot of sites say that this test is also about timing ~ should be done between 16-18 weeks but I had the test end of January and I believe I was 14 weeks. I am only 16 weeks this week. I wonder if that could throw the results off.

PS Thank you all for your prayers and hugs and thoughts/experience!! I truly appreciate it all!

Message edited 2/6/2012 4:28:06 PM.

Re: freaking out...

Posted by mooshyboo

I was also doing some research online ~ I know I shouldn't but a lot of sites say that this test is also about timing ~ should be done between 16-18 weeks but I had the test end of January and I believe I was 14 weeks. I am only 16 weeks this week. I wonder if that could throw the results off.

PS Thank you all for your prayers and hugs and thoughts/experience!! I truly appreciate it all!

Re: freaking out...

With the 1st trimester blood work, my risk for Trisomy 13/18 was elevated. We met with the genetic counselor and decided to do nothing until the next round of blood work or the Level II. I just the results back from the 16 week blood work. My risk went down again for Trisomy 18, but my numbers were slightly above the cutoff for spina bifida. The doctor didn't seem too concerned about spina bifida because the AFP level wasn't significantly above the normal cutoff range. She said it's very common for elevated levels. The normal range is 2 and mine was 2.5. She said with spina bifida, the levels are closer to the 7-9 range. Both she and the genetic counselor mentioned the possibility of growth/placenta issues based on the various hormone/protein levels, which I'm most concerned about. I have my Level II in a little over a week. If it shows any abnormalities with the organs, I'll have an amnio. I'll also be monitored closely with ultrasounds every month to check the growth and NSTs starting at 32 weeks. Either way, I'm definitely scared. I hope everything is ok with you.

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Posted by MrsS2005

With the 1st trimester blood work, my risk for Trisomy 13/18 was elevated. We met with the genetic counselor and decided to do nothing until the next round of blood work or the Level II. I just the results back from the 16 week blood work. My risk went down again for Trisomy 18, but my numbers were slightly above the cutoff for spina bifida. The doctor didn't seem too concerned about spina bifida because the AFP level wasn't significantly above the normal cutoff range. She said it's very common for elevated levels. The normal range is 2 and mine was 2.5. She said with spina bifida, the levels are closer to the 7-9 range. Both she and the genetic counselor mentioned the possibility of growth/placenta issues based on the various hormone/protein levels, which I'm most concerned about. I have my Level II in a little over a week. If it shows any abnormalities with the organs, I'll have an amnio. I'll also be monitored closely with ultrasounds every month to check the growth and NSTs starting at 32 weeks. Either way, I'm definitely scared. I hope everything is ok with you.

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Spina bifida would be diagnosed during the anatomy scan. If I were in your shoes, I would skip the amnio and just wait for the u/s. Try your best not to freak out. I know that is much easier said than done. It is just a screen and nothing more

Re: freaking out...

Posted by azoodie

Spina bifida would be diagnosed during the anatomy scan. If I were in your shoes, I would skip the amnio and just wait for the u/s. Try your best not to freak out. I know that is much easier said than done. It is just a screen and nothing more

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I went/am going through the exact same thing as you. I'm assuming you had an elevated AFP, as I did. After a ton of research and conversations with various doctors, I learned the amnio is NOT a 100% answer regarding spina bifida/neural tube defects. It is not genetic like trisomies are, so it can still be missed. My doctor pushed up my level 2, I had it done twice actually. I saw a genetic counselor. We decided not to do the amnio, though my OB recommended it, bc it still wouldn't be a definite answer and everything looked totally fine on my sonos. for me, the specialists felt my levels came back off due to a blood clot they found. I'm hoping it turns out ok for you. FM if you want, I know how incredibly upsetting and scary it is to get this news.