20 week results- Open Neural Tube Defect

[krissie328]

So I had a 1 in 24 chance of having an open neural tube defect based on my blood work. She said that the ultrasound looked really good and they didn't see anything, but there could be a small one they could not observe. So now I cannot help but freak out a bit. I know it means I still have a 96% chance nothing is wrong. It just makes me wonder if I should do an amnio or not.

 

[dvc2012]

So I had a 1 in 24 chance of having an open neural tube defect based on my blood work. She said that the ultrasound looked really good and they didn't see anything, but there could be a small one they could not observe. So now I cannot help but freak out a bit. I know it means I still have a 96% chance nothing is wrong. It just makes me wonder if I should do an amnio or not.

I'm sorry to hear that you have received this worrying news . I'm not very familiar with this, but I didn't want to read and run. Amnios carry a risk of miscarriage which varies depending on the doctor, so that is something to think about before you decide on an amnio. Also another thing to think and only you can answer this: does this defect make a difference in the outcome of your pregnancy (i.e. will you carry the pregnancy regardless)? If your answer is yes, then is the amnio really necessary? (Again, only you can answer this) and if it is necessary, why is it necessary?

In the cases I have heard about, they were diagnosed by ultrasound.

 

[krissie328]

Yea we will continue inspite of the results. She seemed optimistic that with nothing showing on the ultrasound that it would be very small opening and would have a good outcome.

Thanks for replying.

 

[Tulip]

I would say at 20 weeks they would spot anything game changing. I have a history of NTD, so get an extra scan at 16w to examine the skull and spine. You can see the skin covering by then, so any major opening of the neural tube should be visible. My opthalmic consultant has a minor ntd - it's called Spina Vieira Occulta, and is basically just a dimple in her back - it hasn't affected her at all.

At 20 weeks if she seems happy then I'd be inclined to relax. The bloodwork results probably gave you an increased risk due to elevated AFP levels - but that can be caused by a number of things, not just an open neural tube. Some people just naturally have high AFP. (My consultant offered me the blood test after my 16w scan but I declined as I didn't want the worry of a potential false positive when the scan looked perfect) x

https://en.m.wikipedia.org/wiki/Elevated_alpha-fetoprotein