Community› The Bump Month Clubs› February 2016 Moms
February 2016 Moms
New Discussion

Elevated risk of neural tube defect

mwmiller4mwmiller4 member
in February 2016 Moms
Hi ladies-

I had blood work for AFP done on Thursday and my midwife just called to say my risk is elevated for a neural tube defect. The cutoff for standard risk is 1/242 and my risk is 1/153. I'm currently waiting to get a call back from genetics to schedule a Level 2 ultrasound and consultation and am freaking out. I had a MMC in December. I had the VisibiliT21 test done to check for Trisomy 18 specifically because it's lethal and was hoping this pregnancy would be low drama. Anyone's experiences or words of wisdom would be very much appreciated.

Thank you.
Report Reply to Post
«1

Re: Elevated risk of neural tube defect

  • MrsJG3MrsJG3 member
    I don't have any specific experience for you but wishing you the very best. Keep us updated.
    DD: 8  DD: 3.5  DS:18M
    Baby #4 Due: 2/4/2016
    Feb16 August Siggy Challenge
    Favorite TV Mom
    image

    Report Reply
  • Loading the player...
  • hlmdeckhlmdeck member
    Fingers crossed all is well, let us know how it goes! Big hugs.
    Report Reply
  • inomniaparatusinomniaparatus member
    I don't have an experience with it but i agree with pp... even though your risk is "elevated" it's still very very low.  I know it's easy to say, but I really would try hard not to let it stress you out. Think of the odds that nothing will be wrong- 99+% 



    Feb '16 Siggy Challenge: Favorite Thing About Fall: Haunted Houses and Scary Movies! 
    image

    Pregnancy Ticker
    Report Reply
  • jellybellybean3jellybellybean3 member
    I'm going through the same thing, except they are pretty confident there is a big issue. I didn't have that bloodwork done but I had a terrible NT scan. They found a big gap in the spine during the NT ultrasound. I'm currently waiting to here from a specialist who will do further ultrasounds and tests to confirm. It's terrifying. Not knowing the severity, if your child is even okay.. It's absolutely heartbreaking. I haven't mentioned anything on here yet as I was hoping to get more info/results before I did. It came as a shock. I've had extra folic acid since the beginning and this came out of nowhere. But just know that I know how you are feeling. And even though you have a higher risk, your numbers are so far from one, that I imagine your baby will be perfectly fine. Although elevated, those numbers are still really good. But I know how scary this "unknown" period is. I'm thinking about you. Keep us updated, please.
    Baby #3 due February. Dx with Spina Bifida Myelo  "good things are coming down the road, just don't stop walking"
    Report Reply
  • AchaeAchae member
    No experience here but T&P for positive news!
    Report Reply
  • AchaeAchae member
    @jellybellybean3 that's so scary to hear about! Hoping for positive news your way!
    Report Reply
  • surferP528surferP528 member
    jellybellybean3 What week did you have your NT scan? I am 13 weeks and haven't had one. It hasn't even been mentioned. My next ultrasound is 20 weeks for the anatomy scan. My mother had a baby with anacephaly/spina bifida, so it's a concern of mine. I have been taking the extra folic acid as well.

    I really hope everything goes well for you.
    Report Reply
  • mwmiller4mwmiller4 member
    @jellybellybean3 my heart aches for you. I'm so sorry you're going through this. When do you go in next?
    Report Reply
  • ARogers26ARogers26 member
    Praying for you both @jellybellybean3 and @mwmiller4 !!
    Report Reply
  • mwmiller4mwmiller4 member
    Thanks so much everyone. I really appreciate your kind words and thoughts. I love statistics (and math), so thank you @Miss Lilac! I'm pretty irrational right now and it really helped. I think after the MMC (1% odds) and 2 d&cs need to take care of it (so rare there are no published statistics), I'm paranoid that I'm always going to be on the wrong end of low incidence reproductive statistics.

    I have a Level 2 ultrasound on Thursday at 8 am.
    Report Reply
  • jellybellybean3jellybellybean3 member
    Thanks ladies. @surferP528 I was 12 weeks 4days at my NT scan. Then I went for my results at my Dr's last Monday and he told me the news and then told me I needed to see a specialist out of town for further testing and ultrasounds, but that it doesn't look good.. Definitely the last thing I expected to here. Anyways, he told me to give the specialist two weeks to contact me. It's been 1 week now and I'm dying.. I don't have an appointment, I don't even know who I'm supposed to see, and waiting on an appointment is making me sick. Of course I will deal with what happens, It would just be nice to know what I am dealing with. This unknown is way worse. @mwmiller4 I'm glad yours is soon! I really hope and (think) all is well. And sorry for sharing on your post -- it feels pretty good to get that out and confide in someone. Fingers crossed all is well with your little baby!
    Baby #3 due February. Dx with Spina Bifida Myelo  "good things are coming down the road, just don't stop walking"
    Report Reply
  • salixjoy38salixjoy38 member
    Wishing you the best and I hope your wait to see the specialist doesn't drag on too much longer
    Report Reply
  • Jellybelly119Jellybelly119 member
    Thoughts with you and your families @mwmiller4 and @jellybellybean3!
    Report Reply
  • bookishbakerbookishbaker member
    T&Ps, @mwmiller4 and @jellybellybean3
    Report Reply
  • mwmiller4mwmiller4 member
    That's awful @jellybellybean3 ! I think I'd go crazy! While I don't always love living in a big city, I'm grateful for all the resources right now. Please, please, please keep us posted! I really hope everything is ok!
    Report Reply
  • mamaekmamaek member
    Thoughts and prayers for you.
    <url=http://www.thebump.com/?utm_source=ticker&utm_medium=UBB&utm_campaign=tickers][img]http://global.thebump.com/tickers/tt1db579[/img][/url&gt;
    Report Reply
  • notasycophantnotasycophant member
    Thoughts and Prayers ladies. My RE had a similar concern, so I was on 5mg of folic acid everyday. They told me all was well my last ultrasound, so now I just take my prenatal. Sending you both positive vibes.
    Report Reply
  • dragonfly321dragonfly321 member
    Thoughts and prayers to both of you ladies and hopes that everything turns out positive. Will keep a lookout for updates.
    Report Reply
  • christinam2014christinam2014 member
    Wow. Both of your problems are heart wrenching. The not knowing can be so difficult. I will pray for peace and comfort for the both of you. @mwmiller4 @jellybellybean3
    Report Reply
  • seckenrodeseckenrode member
    @jellybellybean3 Im praying for you and your baby!! *hugs*
    Report Reply
  • ashton2190ashton2190 member
    I'm keeping both of you ladies in my thoughts. I can't imagine living my life and pretending like everything is fine while you have such a heavy weight on your shoulders. Here's to healthy pregnancies and babies for both of you!
    Report Reply
  • AussiechickaAussiechicka member
    Thinking of you both ladies, I'm hoping for good news for both of you.
    Report Reply
  • RN0107RN0107 member
    Thinking of both you ladies!

    MMC Aug 2010
    DS1 Jan 2012
    DS2 July 2013
    DS3 February 2016




    Report Reply
  • MrsJG3MrsJG3 member
    Keeping you in my thoughts too @jellybellybean3
    DD: 8  DD: 3.5  DS:18M
    Baby #4 Due: 2/4/2016
    Feb16 August Siggy Challenge
    Favorite TV Mom
    image

    Report Reply
  • acuteanglesacuteangles member
    Best of luck to you both. So sorry you have to endure this stress during what should be a really exciting time.

    Lilypie Pregnancy tickers
    Report Reply
  • brushesnbrunchbrushesnbrunch member
    Thoughts with both of you, ladies! Hoping for positive outcomes!
    image

    Married.....09/08/2012
    Baby F.......02/02/2016
    Report Reply
  • cboucbou member
    So sorry. Keep us posted ladies. I will be sending positive vibes your way.
    Report Reply
  • ashnewman1ashnewman1 member
    @mwmiller4 I don't personally have experience with this, however my sister had her AFP done when she was 16 weeks and it came back extremely elevated. They scheduled an emergency ultrasound for a couple days later. She went in and everything was perfectly fine. The baby is healthy! They aren't sure why her levels are so elevated but we are glad the baby doesn't have any problems. Prayers for you!
    Report Reply
  • jellybellybean3jellybellybean3 member
    I was wondering how your appointment went earlier! Must be such a relief hey? That's great news, congrats! I finally got the call and go in Monday. Not sure I'm ready to face reality yet..I'm pretty comfortable in my bubble of denial. But I'm sure glad you got some good news, thanks for updating us!
    Baby #3 due February. Dx with Spina Bifida Myelo  "good things are coming down the road, just don't stop walking"
    Report Reply
  • notasycophantnotasycophant member
    @mwmiller4 , that's amazing news! I'm so happy for you.
    @jellybellybean3 , Hoping that it works out the same for you. Have faith.
    Report Reply
  • kateryna72kateryna72 member
    @mwmiller4 and @jellybellybean3 I had an elevated AFP with my first pregnancy. It came up on my blood work and I was referred to a MFM specialist for my anatomy/level II ultrasound. It was so, so stressful, but they were able to tell me with 95% accuracy that my son would be okay. I never really felt like I could relax after that though, because there was always an unknown hanging over my pregnancy. I did end up having a problem with the placenta (marginal previa and then the placenta started to breakdown at the end of my pregnancy). I had a lot of extra monitoring (weekly nst tests at the end and lots of extra bloodwork), and ended up with an emergency c section before I went into labor. The good news was that my son was born completely healthy and did not need any NICU time. We did a lot of research on the topic though, and we did find out some neural tube defects are treatable via surgery in utero. I have my AFP blood work scheduled for Monday, and I'm so nervous because apparently the risk of elevated AFP levels can continue into subsequent pregnancies. Fingers crossed that everything will be fine this time around, but feel free to PM me with any questions.
    BabyFruit Ticker Follow my baby story at: http://www.nycitified.blogspot.com/
    Report Reply
  • cboucbou member
    That is great news @mwmiller4. I hope you keep getting good results!
    Report Reply
  • AdventureMamaAdventureMama member
    Happy to read the good news. I'll keep both of you ladies in my prayers!
    Married 8.5.12
    Caleb born 10.9.13
    2.0 due 2.1.16
    image
    Report Reply
  • mwmiller4mwmiller4 member
    @jellybellybean3 I'm so glad your appointment is finally scheduled, but I know that feeling of dread all too well. Please keep us posted--I have everything crossed for you and you and your family are in my prayers.

    @kateryna72 thank you so much for sharing your story. I'm so glad your son was ok--though I can't imagine how scary that must have been for you! Please keep us posted on your blood work results--I'm praying you have a much less eventful pregnancy--you certainly deserve a break!
    Report Reply
  • Miss LilacMiss Lilac member
    So glad it's looking positive!
    Feb '16 October Siggy Challenge: Favorite Candy


    Report Reply
  • jellybellybean3jellybellybean3 member
    Alright, so I'm finally ready to update. Sorry it took so long but I had to come to terms with it myself.. I'm not quite there yet, but I'm getting closer. The ultrasound showed a definite neural tube defect. The baby I'm carrying has Spina Bifida. That's really all they could tell me at that point. They want to wait until I am further along to look at severity and other possible issues, so I didn't leave with much information. I go back on September 22nd for a level 2 ultrasound. After this the neurosurgeon and my Dr will meet with us, tell us a little more about the severity, and then tell us our "options" (just what I needed to hear then, not). Anyways, what will be, will be, right? Please keep your fingers crossed that I get at least a little bit of good news on the 22nd. And until then, I am going to keep living in my little bubble of "everything's fine"... because it will be, it has to be. Thanks for your support guys  :x
    Baby #3 due February. Dx with Spina Bifida Myelo  "good things are coming down the road, just don't stop walking"
    Report Reply
  • cboucbou member
    @jellybellybean3 - I am so sorry that you guys are going through this. I'm sure it must be very scary and overwhelming. I hope that you hear more positive news at your next appointment. I'll be thinking of you and sending tons of positive vibes your way!
    Report Reply
  • hlmdeckhlmdeck member
    @jellybellybean3 big hugs to you lady, I am so so sorry you didn't get the news we all hoped you would. Try to keep your chin up, take care of yourself, and I will be praying for the best possible scenario on the 22nd.
    Report Reply
Sign In or Register to comment.
Choose Another Board
Search Boards
"
"