Possible Open Spine Defect

Kuveetha

Hi ladies,

I just got a call saying my blood work showed a higher risk of 'Open Spine Issues" which I'm reading as a possibility of baby having a neural tube defect. Is anyone else at a higher risk for this?

Due to this result, we're being given genetic counselling and they moved our fetal survey up to this week. I'm also wondering if anyone had their fetal survey done prior to 18wks? From what little I've researched so far, even finding any possible defect is more likely after 18wks so I'm hoping they will let me have another scan just in case this one doesn't show properly.

I'm mostly just venting, and a bit confused so if anyone else has info or experience with this, please share. Thanks! 

Fitnessteach2010

Did you have the blood test for spina bifida? 

Kuveetha

Fitnessteach2010:

Did you have the blood test for spina bifida? 

I think it's checked as part of the two blood screenings done by my perinatal care centre, but not sure if there are more blood tests they can do. Over the phone the mentioned amnio is an option but not sure I want to do that...

SimplySarahVA

I just got the same news two days ago. They told us we are at 1 out of 68 for the chance of SB. So of course I'm freaking out over here since good results is 1 out of 10,000!!! We have to go to a specialist Friday morning for a special u/s and more testing. I am 18 weeks 1 day and the test that showed we had an issue was done at 17 weeks 2 days. I know if they find other signs in the ultrasound that an amino might be done for more accurate results, but I'm RH negative, putting the baby at an extra risk than normal. Whether we go the amino way or not is still up in the air. If I learn anything new Friday that might be useful to you ill be sure to let you know. 

PrimRoseMama

I don't have experience with this, but I wanted to say that I'm sorry you are going through the worry about your LO. I wish you and your family a safe, healthy journey to meeting your baby.

FX that your baby has no spinal issues!

Kuveetha

SimplySarahVA:

I just got the same news two days ago. They told us we are at 1 out of 68 for the chance of SB. So of course I'm freaking out over here since good results is 1 out of 10,000!!! We have to go to a specialist Friday morning for a special u/s and more testing. I am 18 weeks 1 day and the test that showed we had an issue was done at 17 weeks 2 days. I know if they find other signs in the ultrasound that an amino might be done for more accurate results, but I'm RH negative, putting the baby at an extra risk than normal. Whether we go the amino way or not is still up in the air. If I learn anything new Friday that might be useful to you ill be sure to let you know. 

 

Thinking of you- it's so hard not knowing! I'll also update you from my side. I happen to have a friend who is a GC and she said 17 wks may be too early for seeing anything on the ultrasound so I will push for another one before amnio. Hope they have good news for both of us! Good luck. Xx 

Kuveetha

PrimRoseMama:

I don't have experience with this, but I wanted to say that I'm sorry you are going through the worry about your LO. I wish you and your family a safe, healthy journey to meeting your baby.

FX that your baby has no spinal issues!

 

Thank you!  Xx

Kuveetha

@SimplySarahVA - our scan went really well and I hope yours does too! They couldn't see anything of concern on the ultrasound and said most NTD's would be quite obvious that way. Therefore, we have decided not to get amnio done as my AFP levels were not too concerning and only slightly above the state cutoff.

Hope that helps and fingers crossed that all goes well for you tomorrow!

SimplySarahVA

We also got great news as far as the ultra sound went. The baby looks great, is moving around and they found no signs of any birth defects at all. Unfortunately that is where my good news ends. We then were told the baby has something called ecogenic bowel which could mean anything from cystic fibrosis, a dangerous virus that could cause deafness, blindness and even death to something as minor as slow growth or nothing at all. I absolutely hate getting more news like this where there are so many different possibilities and one of them is nothing. So frusterating. I am now high risk and no matter what have to see a specialist once a month until the baby is born. I'm most nervous about the virus test coming back since I am a teacher so you never know what you have come in contact with in a day. If it comes back that a virus is present in my blood we then have to get an amnio, which is extra dangerous for someone like me who is RH negative. It must be done in order to be given the drugs to get rid of the virus in the baby which apparently can be dangerous for me. I guess now we are just in a waiting game.

I'm so glad your news was much better and that an amnio was not needed. YAY!!!