Spina Bifida risk . . . scared

Amy5810 · July 2013

We went in last week for our 16 week apt. I went ahead and did the tri or quad screening (can't remember what it was) even though I was weary to do it in the first place. I want to know but then again what does that change, you will still love your baby no matter whats wrong. So, I got a call from the doctor yesterday, not even a week later, explaining my results. I knew if they were calling it was bad news. She told me that the baby has a 1 in 71 chance of having Spina Bifida. I am so nervous and scared . . this is our first and we have no family history of anything like this. They have already scheduled our Level 2 ultrasound with the high risk pregnancy specialist for Wednesday the 10th. I just don't know what to think or feel, we are so nervous. Is the same thing going on with anyone else? Prayers would be appreciated.

sabriel1 · July 2013

Prayers are with you. You still have a 70 in 71 chance that the baby will not have it though I'm sure it's difficult to think of that. I'll be thinking of you and hope everything turns out alright, this must be really difficult to go through

MamaHanna · July 2013

You will for sure be in my prayers!

jenohouston · July 2013

holly1416:
Prayers are with you. You still have a 70 in 71 chance that the baby will not have it though I'm sure it's difficult to think of that. I'll be thinking of you and hope everything turns out alright, this must be really difficult to go through

All this, I'm so sorry your going through this, prayers

watercolor5 · July 2013

I don't have any experience with this, but I just wanted to say that you and your LO are in my thoughts and prayers. Try to stay positive and realize that a 1 in 71 chance of your baby having this, is also a 70 in 71 chance of your baby not having it.

Family history doesn't come into play with spina bifida, as it's not passed down genetically. I'm not sure if it would help at this point to up your folic acid intake, but it may be worth asking your doctor about. You should be able to get a diagnosis or a clean bill of fetal health through the combo of an ultrasound and amnio- I think that's the next step in knowing for sure.

You definitely have my thoughts and prayers though- I'd be terrified too, but there's still a good chance that everything is fine.

tatianaazulay · July 2013

I'm soo sorry, it must be really scary to go through this!!! My thoughts are with you! Just try to think about the 70 chance that u will have a healthy baby!!!

lilypienmessimy · July 2013

I'm sorry to hear this! Just wanted you to know I'm thinking of you, stay positive!

Amy5810 · July 2013

Thank you ladies so much your support is really appreciated.

watercolor 5 - I was going to ask her about increasing my folic acid, that is what a friend recommended also. I don't know much at all about Spina Bifida or the abdominal wall issues she mentioned, but she said the last thing I should do is goggle everything, so I havent. I have already been upset enough from what I do know, I am not looking anything up until we know for sure what is going on. I am ready for the level 2 u/s to know a little more. Thank you for the advice. We are staying as positive as possible, but either way will love our baby more than anything in this world.

Whitterpow · July 2013

If my math is correct that's only a little over a 1 percent chance! I would be worrying too which is making me consider turning my screening down, but you're a mom so worrying is normal. Stay positive!

dhruti86 · July 2013

thoughts and prayers on your way! I hope all goes good with you and your LO

notkateanymore · July 2013

I'm really sorry you're going through this, but like pp said you have a 70/71 chance of everything being just fine. Keep your head up!

Oh and because I just had the b/w done today, I happened to look it up and did you know John Mellencamp has spina bifida? So, wonderful things can be done nowadays even if your LO happens to be the 1.

pink flamingo · July 2013

I just wanted to say first off 'Im sorry about the news you received and will be thinking of you. I have Spina bifida in the family unfortunately. It is my first cousin who has it so the this is very real to me also. I have did my test last week so hopefully I will find out soon..

I have been doing some research and found the Spina Bifida Association is a good site to start off with. There are different types you should know about from minor to severe. Did you know there are approximately 15% of healthy people in the US that have Spina bifida and don't even know it. So I would just read up on it but also take it one step at a time. I know its hard not to stress but until you know more all you can do is wait for more results.

Also my mother and I have been talking about it lately and she mentioned a new procedure that they can do in the womb. I found an article for you to read. Its not clicky sorry. Ill be thinking of you.

https://www.cnn.com/2011/HEALTH/02/09/surgery.spina.bifada/index.html

KFiori1 · July 2013

So sorry for the scare. My thoughts and prayers are with you and your baby!

playball13 · July 2013

I know it's easier said than done but try to focus on the less than 1 percent chance. Thinking of you.

MamaGrillo · July 2013

Thoughts and prayers with you!

Red_Dahlia · July 2013

Hugs and prayers!

watercolor5 · July 2013

Amy5810:

Thank you ladies so much your support is really appreciated.

watercolor 5 - I was going to ask her about increasing my folic acid, that is what a friend recommended also. I don't know much at all about Spina Bifida or the abdominal wall issues she mentioned, but she said the last thing I should do is goggle everything, so I havent. I have already been upset enough from what I do know, I am not looking anything up until we know for sure what is going on. I am ready for the level 2 u/s to know a little more. Thank you for the advice. We are staying as positive as possible, but either way will love our baby more than anything in this world.

Good advice to stay away from google. As I understand it, they don't know what causes spina bifida, but they have linked increased folic acid intake to decreasing the occurance of it, and I think some women may benefit from more folic acid than the prenatal amount gives, so it's worth a shot. Not sure if it helps more before pregnancy and during first tri though.

At my 13w u/s with my first baby they thought she had an abdominal wall defect like an omphalocele or gastroschisis, so I was scared for a few weeks until her next u/s showed up normal... Mom worry starts early and sticks around until after our kids have kids. Let us know how your next scan goes, because we're all thinking of you and your baby.

MelAnnDi · July 2013

T's and P's for your little one. Try to stay positive!

RanFan28 · July 2013

Prayers for LO. Ditto what everyone else said. Try to focus on the positive side. Keep us posted!

amberpro · July 2013

I'm so sorry you're going through this, but remember it's not a definite thing yet. My thoughts and prayers are with you.

jmb527 · July 2013

I hope your next appt goes well and you find out LO is ok! Thoughts and prayers with you and LO.

Amy5810 · July 2013

Thank you guys so much for your tips and support. It has been tough so far just thinking about what could be but we are staying positive and faithful. Its great to have this board for support because we arnt telling anyone but our parents and a few very close friend so all extras prayers are appreciated. Thanks guys!

ashabe2530 · July 2013

I am so sorry to hear you are going through this! You are in my thoughts and I hope all is well for you and baby. Please keep us all updated and, as hard as it is, know that the best thing you can do for baby now is to try and remain relaxed. Good luck!

Tigger & pooh · July 2013

I am sorry you are going through this. I have received a positive screen in the past and the waiting is just terrible! I truly hope your screening was wrong and everything turns out fine. Please let me know if I can be of any help or if you have any questions I can answer for you.

aessary03 · July 2013

I'm late to the thread. But there are many false positives with those tests. There are many factors that can skew the results, such as being farther along.

With that said, my quad screen came back as an increased risk for spina bifida with my dd. I started seeing the perinatalogist one a week. After the first ultrasound he was convinced baby was fine but kept seeing me weekly to monitor progress. My dd was born premature due to an unrelated condition, but absolutely no spina bifida.

Try not to worry too much. Big hugs.

malamutemommy · July 2013

I'm sorry you heard that news, it's not something any expectant mother wants to hear, ever. I'll put the numbers into percentages for you so you might better understand what that number they gave you actually means. You really have a very very tiny chance of your child having spina bifida. The chance of your baby having it is .015 percent. Not even close to 1 percent. That number is closer to 0 percent, and you can look at it that way. The chance of your baby NOT having it is 99 percent. I know it's scary to hear that you have a risk, but look at the numbers positively. I know it's scary, but really your baby's odds look pretty great actually. If your child did happen to be that .015 percent, there are different degrees of spina bifida as other PPs have already stated. Try not to panic, even though I know it'll be hard not to because no matter how great the odds are, we will always focus on the .015 percent. It's just human nature. But really, don't worry. Even if your risk is so small that it's not even worth mentioning, doctors have to say you have a risk for liability reasons. Try not to think about it, and I hope everything turns out great for you.

*Mrs*Rohrbaugh* · July 2013

dontstopbelievin:
I'm so sorry, I'm sure this is very scary. Remember that there is a 70 in 71 chance that your baby doesn't have spina bifida. If you can, focus on the positive until you know more.

This! Sending T&P!

Hallelujahbaby · July 2013

Hey ... Aww il so sorry for your news... But please dont give up hope. My mum got told that my brother had a very high chance if spinabifada and told to abort. My mum refused thankfully, as my brother is now an extremely healthy 22 year old with no signs of any issues .... Fingers crossed for you xx

Boston41 · July 2013

Good luck with everything! I myself have Spina Bifida. Unfortunately at this point, increasing your folic acid intake won't help at all because the neural tube is already formed by 12 weeks. Even though it's not known to be genetic, I was prescribed 4 mg folic acid, in addition to what was already in the prenatal vitamin, to start taking a few months before we started TTC and my OB told me at 13 weeks I didn't have to take it anymore.

I want you to know though that Google is the worst! You'll find the worst cases. There are many different types but everyone is different. I have had many spine surgeries and have had to use a wheelchair and crutches for the last 10 years, I'm 30 now, but I'm married, pregnant with our first child, have gone to college, played sports, and done so much over my life despite my disability.

Anyway, try stay positive. I know it's hard and I was extremely worried too but if your baby has Spina Bifida, they can still live a full and happy life. If you have any questions, don't hesitate to ask.

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