Spina Bifida Test Results

TravelingJen · April 2014

Newbie here to the Bump and first pregnancy (17 weeks 2 days).

I received my results today regarding my integrated screening test: extremely low for Downs and Tri but was told that my risk for Spina Bifida was 1/370. Though I had completed research on the risks for Downs and Tri I hadn't done any on Spina Bifida so the number I was given seemed high. I asked the RN if they were concerned and she said that the midwife essentially considered it a negative screen. I asked her what number they would consider to be a positive screen for Spina Bifida and after sounding a bit flustered she said 1/6. I didn’t question her but decided to do some research as that number seemed odd to me. Obviously I’m not a medical professional but in the reading I’ve done it seems as though doctors consider odds anywhere from 1/100 up to 1/1000 as a positive screen (why such variation?) and typically schedule a level 2 ultrasound or amnio to rule out Spina Bifida. My odds indicate I have a 99.73% chance of having a baby without Spina Bifida but I’m still a little freaked out. I took prenatals for several months prior to getting pregnant/throughout my pregnancy, know for certain the date of conception, no family history of neural tube defects and this pregnancy definitely didn’t involve multiples (common reasons why the AFP level is sometimes high).

I am wondering if I should call my doctor back and request a level 2 ultrasound or just consider it a negative screen and try my best not to worry? I understand that my chances are quite small (0.27%) there’s always “that” chance. My mom was diagnosed with ALS (Lou Gehrig’s disease) 6 months ago. The average person has a 1 in 50,000 shot at getting that disease but my mom still managed to get it even though she only had a 0.002% chance…

Thanks for any advice/insight you might be able to offer to this paranoid newbie :-)

aliciak316 · April 2014

I know it's easier said then done but try and relax there's probably nothing wrong. If getting another ultrasound done will make you feel better then do it. Doctors seem to be very worst case situation though so if your doctor isn't worried I wouldn't be worried either. And don't do research on the internet it just freaks you out everyone posts there one in a million stories but you don't read the 999,999 other stories that were just fine.

mrsdanielleM2010 · April 2014

I would try and have your anatomy scan as early as your doctor will do it - at my place that's 20 weeks, but I've heard of 18/19 at other places. Otherwise, just try your best to focus on how good your odds are. Good luck!

Risplus1 · April 2014

A level 2 ultrasound is also called an anatomy scan, so chances are you already have one scheduled. I know you're extra worried because of your mom, but your chance of having a baby with spina bifida are practically zero.

And you've already done everything you can do. You took folate. You scheduled a level 2 ultrasound. Try not to do any more research until your anatomy scan. The only thing you can control right now is your stress level.

SingleMom31 · April 2014

One of my coworkers had a son that was born with Spina Bifida. It was detected at their normal 20 week anatomy scan, and (while clearly not something you want to hear) allowed them time to come up with a birth plan that would provide the best outcome (C-section with surgery scheduled the following day). Assuming that you're having a normal 20 week a/s, I don't think that I'd push for one in the mean time. Good luck!

Edit: I can't type.

sign84 · April 2014

Lurker posting for the first time. I am 18 weeks and 1 day. I am going through the same thing. I got a call that the levels for my AFP test were elevated. My odds are 1/190. I was sent for genetic counseling. I was told that they could do the blood test again to see of the levels change or not. I was also told that the anatomy scan is the scan they use to see if there are any open neural tube defects. If there are then they said an amniocentesis could be administered if I wanted
I know how you are feeling, any chance whether small or not, makes you want to worry. I am here if you need more support!
Also, ladies I will try and be a more active participant.

mrsdanielleM2010 · April 2014

sign84 said:

Lurker posting for the first time. I am 18 weeks and 1 day. I am going through the same thing. I got a call that the levels for my AFP test were elevated. My odds are 1/190. I was sent for genetic counseling. I was told that they could do the blood test again to see of the levels change or not. I was also told that the anatomy scan is the scan they use to see if there are any open neural tube defects. If there are then they said an amniocentesis could be administered if I wanted I know how you are feeling, any chance whether small or not, makes you want to worry. I am here if you need more support! Also, ladies I will try and be a more active participant.

Good luck with your anatomy scan and welcome officially to S14!

TravelingJen · April 2014

Thanks for the words of advice/encouragement everyone! I have my level 2 ultrasound scheduled in 2.5 weeks but have left a VM for my midwife to see if I can maybe get that moved up to alleviate some of this worry.

CTbride79 · April 2014

I know this is not the same exact thing, but with my DS #1, we were told that he had something like a 1/264 chance of Downs, which was just below the 'normal' number. I was really freaked out initially, and we decided to do the Level 2 u/s, which decreased our chance to around 1/541. He ended up being fine. So try not to worry too much...the odds are on your side!

sign84 · April 2014

mrsdanielleM2010 said:

sign84 said:

Lurker posting for the first time. I am 18 weeks and 1 day. I am going through the same thing. I got a call that the levels for my AFP test were elevated. My odds are 1/190. I was sent for genetic counseling. I was told that they could do the blood test again to see of the levels change or not. I was also told that the anatomy scan is the scan they use to see if there are any open neural tube defects. If there are then they said an amniocentesis could be administered if I wanted I know how you are feeling, any chance whether small or not, makes you want to worry. I am here if you need more support! Also, ladies I will try and be a more active participant.

Good luck with your anatomy scan and welcome officially to S14!

Thanks!!

Also, quote fail lol

Kateysomething · April 2014

Just wanted to say, hang in there, and I'm sorry about your mom's diagnosis - I've seen ALS in action, and it's no party. Sending positive thoughts her way!

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