thread: Tell me about spinabifida....testing, etc, bit scared for my friend

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  1. #1
    Registered User

    Jan 2009
    5,235

    Tell me about spinabifida....testing, etc, bit scared for my friend

    I don't know a whole lot of details other than....
    My friend who is 34 and just had her 19week scan has been told the baby might have severe spina bifida. As far as I know she has had some blood tests and the scan, she hasn't had an amnio yet.
    What I need to know is how accurate are blood tests in diagnosing this. Can you tell from an ultrasound, etc.
    I guess I want hope for my friend that early testing isn't always accurate.

  2. #2

    Oct 2005
    A Nestle Free Zone... What about YOU?
    5,374

    Hi. This is a very stressful time for your friend & for you too since I am sure you are feeling so much for her too...

    Spina Bifida is a neural tube defect. There are four types occulta, closed neural tube defects, meningocele, and myelomeningocele. Occulata basically and loosely means hidden. The meningocele and myelomeningocele being more severe. Anencephaly is also a neural tube defect that is incompatible with life. I know sadly there are some parents in our Belly Belly community that have dealt with this in their babies.

    Spina Bifida is usually detected by ultrasound. Severe neural tube defects are quite readily seen on u/s & it's quite difficult to miss them. Usually a MAFP test is done. This protein is only found in small amounts in our blood so if a fetus has a neural tube defect this will cause a higher than normal reading in the maternal blood. However, it is not diagnostic it is only a screening test. Usually if it is suspected that a baby has a neural tube defect on u/s the MAFP test is done (accurate dating is needed as the levels increase with fetal age). If there is any doubt amniocentesis can be done to test the amniotic fluid for acetylcholinesterase. (excuse me if my spelling is incorrect). If this is positive it is highly indicative of a neural tube defect. If not then it may point to a different fetal defect.

    People with spina bifida can lead full lives depending on the severity of their NTD...

    I hope your friend has lots of loving support around her as she navigates this difficult road.

  3. #3
    Registered User
    Add Rach75 on Facebook

    Oct 2005
    Moura, QLD, Australia
    3,754

    for your friend having lost a daughter to anencephaly

    I hers is a mild case of spina bifida well I pray everyrhting is ok but if its Spina bifida thats its mild

  4. #4
    Registered User

    Jan 2009
    5,235

    I've just heard from my friends sister, the initial test results are all CLEAR!!! They are still waiting for final results, but if anything is wrong, it would be very minor!!!
    Thank you God!!

  5. #5
    Registered User
    Add Rach75 on Facebook

    Oct 2005
    Moura, QLD, Australia
    3,754

    fantastic