High risk - Spina Bifida

[strawberrieve]

Hi everyone, this is my first proper post, I hope everyones well.

I had some confusing and upsetting news today, my midwife came round and told me that my 16 wk blood test for spina bifida came back at high risk. I'm devastated, although she said that its only high risk she couldnt give me my score as in 1 out of however many. I've been taking folic acid from the start and eating well, so i'm wondering if i'm just unlucky.

Has anyone else had this or know any information about it? I'm so worried and confused, i've to go back for an ultrasound on tues, so its just the waiting thats hard now. My fiance will be so upset, hes in the forces over in Afghanistan just now, this is out first after having a miscarriage early last year, so i'm praying everything will be fine.

Any advice is appreciated. xx

 

[tabitha561]

I have heard those blood test are very unreliable. That the baby can have a high risk and everything be fine. A big thing is just if it does have spina bifida it could be just a mild case. I never had any of those blood test because house unreliable they are. I am going to love my little girl no matter what. No matter what health problems or anything she has.

 

[Jessicax5]

I'm sorry you're going through this. I don't have experience but I do know that triple or quad screen tests do come back with false positive quite often. I know you're worried but just think positive and you will know for sure on Tuesday. I'm sure everything will be ok though.

 

[My4thmiracle]

Fingers crossed your baby healthy xx

 

[theresarhuebb]

sorry to hear your news, your scans will be more helpfull so dont put your self down. chin up and hope for the best. as for the partner i dont know how to tell him the news. when will you hear from home and when does he come home x

 

[lilly77]

just wanted to send you some and hope everything turns out fine for you and your bubs xx

 

[strawberrieve]

Thanks everyone, i'm crossing everyhting for tue, its just the waiting thats hard. I've since found something online that said because the midwife didnt take my weight at the 16 wk test that could affect the result. i've put on a bit more weight and i guess i'm hoping that could have some impact on it.

I'm still looking for statistics online... hoping to find something. Has anyone had a high risk and everything been ok? xx

 

[Chocciebutton]

Hi, im hoping that the outcome is good news......sorry to sound a bit 'thick' but is there a blood test for this at 16 weeks and is it routine? I thought it was done at 12 weeks??
(ive only had 2 babies before....you would think I would know lol!!)

 

[strawberrieve]

Hi Choccie, yeh theres a test for downs, spina bifida and another one at 16 weeks. if its high risk u can have more tests for definitive outcome. thank u, im praying for good news on tue. xx

 

[Brieanna]

Didn't want to read and run.

I have also heard that these tests can be highly unreliable. I haven't gotten my results back yet for my tests, but the main reason I even did mine was because OH wanted to be better prepared. I didn't want to take them because of how unreliable they are and also, because I didn't want to spend the entire rest of my pregnancy worrying about something that might or might not happen. I will love my child no matter what, so the results do not matter except for me to be better prepared.

I'm not sure how yours works, but if mine says that I am high risk after the ultrasound I think they can do an amniocentesis to see more, but since that has a rate of miscarriage I won't be doing that. I have heard of people who's test said they were high risk and then everything turn out fine.

Good luck on your ultrasound on Tuesday.

I was neighbors with a girl who had spina bifida and we played together and she seemed to have a normal life, so even though of course we all want our babies to be completely healthy, a child living with spina bifida can lead a normal life.

 

[Chocciebutton]

ok...thanks strawberrieve....I had the downs test at 12 weeks and that came back as 1:2740 which is good considering im 39 in April. Does anyone know if this would have been tested for when I had the blood tests for downs? Strawberrieve are you talking about the triple test?

 

[spring_baby]

Hi Choccie, yeh theres a test for downs, spina bifida and another one at 16 weeks. if its high risk u can have more tests for definitive outcome. thank u, im praying for good news on tue. xx

Bit confused did you not have the nuchal scan at 12 weeks plus blood tests and then get offered the triple test at 16 weeks after, like choccie I am having my 4th baby and would think by now would understand,
I had a nuchal scan and blood tests at 12 weeks and was told if there was a problem they would recommend the triple test and cvs at 16 weeks.
My prayers are with you and yr baby that the test is a false negative, big hug coming yr way xx

 

[midori1999]

There is a high risk of false 'positives' with the blood tests, so try not to worry too much, all might be fine.

My friend's 13 year old daughter has Spina Bifida. You really wouldn't know, she is perfectly able bodied and plays lots of sports etc. Obviously she is at the mild end of the scale, but I also knlow a few adults with SB, some who have to use wheelchairs for part of the time and they are perfectly happy. It's not always the dreadful thing people imagine.

 

[Semanthia]

Try not worry too much.I know it is easier said than done. I personally skipped those tests because they aren't very reliable and I didn't want the extra stress, besides they would tell you something like that at the anatomy scan.
My sister's friend was told at her anatomy scan that her baby was going to have spina bifida and that they strongly suggest that she abort. Well she made the choice not to abort and her baby was fine, he didn't have spina bifida and he is a healthy 2 year old now. I just thought I'd share that nice story with you to hopefully boost your spirits! Be positive and try to relax until they give you an ultrasound that will tell you more.

 

[LittleSpy]

There is a high risk of false 'positives' with the blood tests, so try not to worry too much, all might be fine.

<snip>

Exactly.
The literature my OB office gave me on the quad screen states that 19 out of 20 positives are FALSE. So I've decided to not have the test because I don't want any added unnecessary stress like what you're going through right now and because it won't change anything for us either way.

 

[SnapDragon]

This happened to my best friend, not all that long ago. She was terrified as she didn't know if she would need invasive tests etc., but ultimately all it meant having further scans to check the baby's development. In the end her little boy is fine (currently 31 weeks). They say that it is possible that the case is so mild that there is not visible and will cause him no issue in his life, or it was so limited that it has minimised during development or just a false positive.
I hope this helps put your mind at ease. x

 

[BabyBoyle]

Hi Hun I know everyone says it but the bloods are just a risk, baby may be fine. I work with a girl with spina bifida, she's stunning, does the hair of Paul weller and madonna and does get backache but she stands 14hr days.

Also my ex dad has it, had an operation at birth and is fine n healthy n no problems.


Every cloud & that babes but crossing fingers all is well xxx

 

[salander]

I was supposed to have the nuchal scan and blood test at 12 weeks but babs wouldn't move to the correct position so am booked to have the quad test on tuesday. I'm really nervous about having it and even if it comes back higher risk i won't be having the cvs. My fella thinks I should have it just to put my mind at ease, but there are so many false positives it will just worry me more...He also thinks that if it comes back higher risk then at least we can prepare ourselves...I just think with my age (35) is going to make it higher risk anyway....very frustrating just don't know what to do

 

[Sevenladybugs]

The AFP (test they do at 16 wks) is notorious for false positives. Try not to worry. Chances are your scan will show baby is just fine

 

[strawberrieve]

Hi Choccie, yeh theres a test for downs, spina bifida and another one at 16 weeks. if its high risk u can have more tests for definitive outcome. thank u, im praying for good news on tue. xx

Bit confused did you not have the nuchal scan at 12 weeks plus blood tests and then get offered the triple test at 16 weeks after, like choccie I am having my 4th baby and would think by now would understand,
I had a nuchal scan and blood tests at 12 weeks and was told if there was a problem they would recommend the triple test and cvs at 16 weeks.
My prayers are with you and yr baby that the test is a false negative, big hug coming yr way xx

Hi, as far as i knew i had a 12 week scan but wasnt aware of any nuchal testing, then i had they gave me the choice of having the blood test at 16 weeks. they could have checked the nuchal but just not told me, app my test for downs was ok but its just the sb now i'm worried about. thank u ur hug was much appreciated, i go from feeling ok to remembering about it. dont know how i'll be able to concentrate at work. xx