Spina Bifida — The Bump
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Spina Bifida

We found out today our little boy has Spina Bifida.  After a tragic last pregnancy, we were so excited this time and feel devastated.  We don't know all the details yet, only that things could be very bad.  Anyone with experience, successes?  So scared of what this means.

Re: Spina Bifida

  • I have no personal experience, but i wanted to say that your family will be in my thoughts.

    I can only share that there is a little girl in my son's class who has spina bifida. She is a beautiful and smart little girl. She does not have much use of her legs, but does wear braces and sometimes uses a walker. I have no idea what she has been through to get to where she is today, but she is only 2. She also wears glasses but idk if that is related.

    GL to you!

  • Oh no! I am so sorry.

    I don't have a LO with Spina Bifida but this board is a great place to express your fears, sadness and find some good support.

    I hope you find some positive answers and that your little boy surpasses any expectations. 

    [IMG]http://i50.tinypic.com/294l44i.jpg[/IMG]
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  • a good friend of mine's son has sb.  doctors told them he would never walk...well he's walking-with braces, but he's walking.  he's a smart kid with a lot of personality.
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  • I know a little... I'm assuming you are talking Myelomeningocele (Spina bifida)? I have occulta (the mildest form) but have a lot of friends with Myelomeningocele. I actually play wheelchair tennis with a 12 year old with it. :]

    If you're on facebook, I know a woman in FL that would probably be more than willing to talk to you that has Myelomeningocele. She is very involved in the spina bifida community. :]

  • hi there.  i have spina bifida, and consider my  life to be a 'success'.  :)  i'm able to do most things and a lot of people don't even notice...there are several types, and within each type there are so many variations of symptoms.  personally, i have 'club' feet, a neurgenic bladder and bowel, a fatty tumor on my rump (affectionately called a 'bubble') and a bit of a limp.  when you read it, it sounds bad - but it's not.  wen i was a child, i had many orthopedic surgeries on my feet and legs, and there were also hospitilizations related to urinary tract infections (from self catheritization).  i think what is important to know is that i was born this way, and have never known anything else, so really - it's not such a huge deal to me.  (my mom may have a different story...)

    i went through normal schooling, just like everyone else.  graduated at the top of my class, had a blast in college and now am a successful management consultant. i'm married to a dreamy guy and 3 months pregnant with our own baby.

     i think one of the hardest things about SB is that the symptoms can vary so widely and there isn't a ton of information out there in an organized fashion.  one thing you might consider is speaking with a doctor that deals with SB kids on a regular basis.  they'll be able to give you a lot of answers and maybe even connect you with other parents.  i know that my doctors do this regularly...

    if you have any questions at all, or want to know anything, please send me a private message.  i'm happy to help however i can.

  • Hi, so sorry you are having to go through this right now!! My DS has spina bifida. He had to have surgery 48 hours after birth and also had a shunt placed at the same time. It was such a whirlwind!! He may not be progressing like other children, but i have to tell you that he is the Sweetest, Happiest baby EVER!! He is such a blessing to have and has changed so many peoples lives already. His lesion was from about L3or4 to Sacral and we were not sure when he was born what his functioning level would be. Well he can move his feet and legs. He does have decreased sensation though and just started like last weak being able to bear any weight on them. He also has low muscle tone though and just this week has started army crawling, which is adorable! I don't know if you have read yet, but one of our big concerns is with his neurogenic bladder. We have to cath him 4-5 times a day, which in the beginning seems terrible but by now, its really not as bad as it sounds. I am not going to try to overwhelm you at this point, but just wanted to tell you that I am here if you ever need to talk. Please email me if you have ANY questions!!! [email protected] and just to let you know I am a RN and my husband is in Research Physiologist, so we have read and researched ALOT!!!
  • My DS has Spina Bifida. He is almost 4 months old. We opted out of testing durning pregnancy, so we didn't find out out it until he was born. I guess you would call his a mild case but he is going to need surgery in a few months. He has control of his legs and feet which is great. And he doesnt need a cathetor or anything like that, for now. He is meeting all of his milestones early so far (I know we've got a long way to go, but I'm staying postitive). Which is my advice to you. STAY POSITIVE! Even if your DS has a severe case just take it one day at a time. When your LO is born he will only be a few months younger than mine so if you ever need some advice or to vent just PM. I would be happy to talk! Smile

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