This topic contains 35 replies, has 24 voices, and was last updated by  MummyPanda 3 years, 4 months ago.

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    I’m 24 weeks pregnant and had an ultersound at week21..My doctor is concerned and have to go back on wednesday for another ultersound to make sure everything is okay…The reason why i’m writig is cause tolday she told me that theres a 1percent that it can be spina-bifida or 1% that its down syndrom…My husband is freaked out by the whole thing that he doesn’t wanna talk about it..I know i’m a strong person but i’d like to know more about this so i can brace myself for wednesday..



    Hi Ladies- I’m having a tough weekend. I had the AFP test done on Monday morning and the nurse called me with the results yesterday afternoon saying they came back positive for neural tube defect but they said no down syndrome was detected. She told me not to worry to much as many women get a positive reading. I go Monday morning first thing for a target/more specific ultrasound for them to look at the babies spinal cord for possible spina bifida. I just need someone to talk to. I know God gives us only what we can handle, I’m just in shock right now. I hope the ultrasound comes back showing nothing, but I’m still nervous about it all, because it could be really bad. Only my husband and I know and haven’t told our family and friends as we want to wait and see what Monday’s doctor’s apt. shows. Just let me know your thoughts. I would love to read them. Trying to figure out how to prepare for Monday and get any helpful info.


    I was told a week ago that my AFP results came back pretty high, and the doctor (who I will call Dr. Gloom and Doom on account of everything coming out of her mouth is preceded by: ‘High Risk’!) urged me to go get an ultra sound the very next day.
    So I did just that, and then that doctor said my baby had a bit of fluid on its brain. I was only 16 weeks so they couldn’t tell the sex.
    So, both of these doctors are leaning towards Spina Bifida, even though now I still have to wait another 8 days before I can go in for a level 2 ultra sound.
    Let me tell you, ladies, I was never so scared in my life those first few days of getting this news. I stayed at home from work crying and lying in the fetal position and cursing the day God breathed breath into my lungs.
    Then I went and did some research.
    There are plenty of wonderful families out there who post their wonder children on youtube and different blogs. Though SB is a tough thing, it’s not insurmountable.
    Just when I started feeling better about this whole thing, I found out that many of these alpha fetal protein test often give false positives. And sometimes babies have fluid on the brain that clears up all by itself!
    I truly believe doctors like to blow things out of proportion and until they can SHOW me beyond a shadow of a doubt that somthing is wrong, anything coming out of their mouths should be listened to with caution.
    Five years ago they told me I had uterine cancer and had me all set up to have my ovaries removed, and it turned out I had a fibroid!
    In anycase, I’m prepared for whatever the results. I love my baby, no matter what, and he/she will be what God intended, even if he/she has two heads and a tail!



    Beautifully Written and I could not agree more. I was told with my first pregnancy that my baby had Ventriculomegaly, and possibly hydrochepalus or spina bifida. Was told he had a club foot, and that all these things together could mean he had some sort of trisomy or other anomoly associated with it. Well….we kept going back for ultrasounds, the news never really got any better…but low and behold out came my little miracle baby, with a minor club foot but otherwise PERFECTLY HEALTHY! Just goes to show that even with todays technology, they still can be wrong.


    Hello all! How nice to have a support group at hand for issues like these. I found out today that my little baby BOY–yay–definitely has a nueral tube defect, aka Spina Bifida. (YAY for the boy, BOO for the SB). I was prepared for the news so was able to avoid a meltdown, thank god. Plus I had a wonderful doctor (unlike the last gloom and doom MD) who was all positive and upbeat. He looked like he had stepped right out of Mayberry RFD, bowtie and all! He had me rolling. And he told me EVERYTHING I could possibly want to know, so questions were kept at a minimum. I like a person who can dole out bad news and make you feel good about it. That’s a gift, you know?
    Fortunately the defect is at the lowest base of the spine, so if your baby’s going to have SB that’s a good place to have it.
    Of course, nothing is ever certain until all is said and done so I am just going to keep hope alive. He will most likely have to have surgery right out of the womb or shortly thereafter, and that makes me feel sad that my poor baby comes straight into the world and right into pain. I cut the tip of my finger off with a pair of scissors once and thought I was going to faint walking to the corner CVS to buy some bandaids, I can’t imagine having surgery on my spine. At least everything else about my little peanut looks normal. The doctor said the best thing I can do is make sure I carry this baby to term, which means no more giving the finger to slow drivers. Lord!
    Anyway, I think I’m going to go buy my son a bow tie…just for luck!



    lin- your story is just like mine! I was told that my daughter had spina bifida, with enlarged brain ventricles and a clubfoot which meant trisomy 13. I kept going for all these ultrasounds and two amnios and a lot of stress, heartache and pain to have her be born 3 1/2 months later absolutley perfect! No clubfoot, spina bifida or anything else(she was tiny though!) All you ladies who have been told that your child has birth defects just remember that doctors don’t know everything and ultrasounds aren’t definite!



    wow, thats crazy that they were wrong for both of us! Thank god they were though! The club foot he was born with, seemed so minor considering what we thought we were dealing with!



    hey ladies…my mind is all of a sudden all over the place with these birth defects idk why…according to my doctor everything looks good. but my husband has SB and the doctors told him he wouldn’t live to be 14 and would be soo short…well they were wrong..but its got me thinking our little one has this…even tho the doctor looked at his spine and said it looked good, I’m very concerned in my blogs I have one called ‘confused’ if you wanna see what I’m talking about feel free to take a look, I thought it was his penis but other moms are saying its his spine…please someone help me out I need to stop worrying but I can’t.


    I wish the doctors had been wrong about my baby’s diagnosis, but my son definitely has SB and Hydrocephalus. We’ve been in the hospital 17 days waiting for his surgical wounds to heal. The shunt in his brain leaks fluid around it like an ill-fitting cork and every day the doctors have to drain the site. The hole in his back was HUGE and did not have the protective sac to cover it. When my son was born he was able to kick his left leg and move his right leg a bit. Since the surgery to close his spine opening, his legs seem paralyzed. Of course he is still recovering and has a long way to go. He is an absolute gem, though. I never thought I’d give birth to a baby so freaking cute! The nurses all love him. He is so sweet and so strong. What the angels missed in his spine they made up for with dimples in his cheeks and chin. Where he got those is beyond me since his father and I are completely dimple-less!



    Hey everyone,
    I have a 2 year old son who has a mild case of spina bifida.
    He has a dimple on his butt and is doing great otherwise.
    The doctor does want surgery though to take the dimple off he said.
    Does anyone know anything about that??? I think i might actually have the SBOcculta as well but not confirmed yet.
    Now I just miscarried a week ago and the doctor said to me I have a 1 in 20 chance of having a baby with SB…
    Before I asked them is it genetic and they said NO, but now that I had a miscarriage they totally freaked us out!!!
    We really really want another baby but me and especially my partner are so worried now…
    Sorry I havent really got a question as such am just confused and worried…



    hi all! i am only 5 weeks, but because this pregnancy was unplanned and i was on meds that have been linked to NTDs, I am of course freaking out! I was wondering how early NTDs have been detected? I’m not good at waiting, especially for news that could drastically change our lives! Thanks for any info…



    Do any of your kids with sb have chiari malformation?


    I just want to give a year update on my little poopy-poop. After all we have been through I can honestly say that the anticipation of having a baby with SB is far more stressful than the actualization. My son’s first b-day is in 2 weeks and he is thriving every day. Yes, he had to have a shunt. His second one is working just fine and his hair is finally growing in enough to camoflage the site. Yes, he does have some paralysis in both legs, and walking may be prohibited without assistance, but he can kick both legs, especially his left one, like crazy! He lacks the muscles or nerves in his lower back to help him stabalize his torso, but that does not stop him from trying to sit up on his own. He does not crawl, but rolls from side to side. He is not aware anything is amiss and, dare I say, he is one of the most mellow and happy babies I have ever seen in my life. Most ppl comment on his sweet disposition. Yes, he also has Chiari II Malformation but not a single symptom. I know the ‘horror’ or ‘shock’ or ‘stress’ of finding out you are carrying a child with this kind of defect can be overwhelming and gut wrenching. The fact, though, is no one really knows what the outcome will be until the baby is born. And if truth be told, once you are holding that little dumpling in your arms, somehow whatever defect he has does little to take away from the absolute joy and love and relief you feel looking down at the miracle you have brought into the world.



    hey all i found out 3 weeks ago that my unborn baby has sb they have said his brain looks clear from fluid at the moment but it can still happen.
    we have been told he is going to be paralysed from the waste down but they could be wrong who knows untill he is here. i am only 22 weeks pregnant and i am really worried about giving birth. i have given birth 3 times before so i no what to expect but ive got loads of worries still.
    can any of u help me by telling me if u went into prem labour or if there was complications and so on. thanks. x



    Hi all, i just found this part of the site. My daughter is 2 and has spina bifida and hydrocephalus. If anybody wants to ask me any questions please feel free to message me,.

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