new looking for other moms...

[leigh828]

hi, i'm new to this site, first time posting. i am currently 19 weeks pregnant and found out yesterday that my baby has spina bifida. i'm not really sure where to begin. i know that the opening in his spine is at L2. does anyone else have any children with this that can shed some light on my situation? i guess i just want to know what i can expect when he is born. there are so many confusing things that you read on the internet and i would just rather know first hand. thanks so much! ~leigh

[smoop]

Hello! I have a daughter w/ SB who just turned 3. So it wasn't too long ago that I was exactly where you're at now. I was also told my daughter's lesion was in the L1-2 range. I was told to expect her to be a full-time wheelchair user. I was really hung up on this! Anyway, when she was born she turned out with lesion around L3-4. She has a shunt for hydrocephalus. She started walking with braces and a walker before the age of 2. Right now she wears long leg braces up to her thighs and continues to use a walker (you can see her in the picture section - Analise). She has a wheelchair and she uses it for long distances-- she tires out somewhat easily.

You should get the book Living with Spina Bifida by Sandler. It is extremely helpful. You should also realize that docs are often wrong during ultrasounds--you won't fully know the details until your child is born. I was told my daughter would have clubbed feet and they were wrong about that too.

I will say that what I originally thought was the hardest trial of my life turned out to be one of the biggest blessings. Don't get me wrong-- I wish she did not have SB but she is such a joy in my life. Yep- we have some hard challenges but we just get through them. I cannot imagine my life without her! Feel free to email me privately if you wish. I know how hard this is.. hang in there!

[leigh828]

smoop- i just saw the pictures of your daughter and she is such a cutie!! :) your reply was just what we needed to hear, thanks so much!!

[Barb]

hi, i'm new to this site, first time posting. i am currently 19 weeks pregnant and found out yesterday that my baby has spina bifida. i'm not really sure where to begin. i know that the opening in his spine is at L2. does anyone else have any children with this that can shed some light on my situation? i guess i just want to know what i can expect when he is born. there are so many confusing things that you read on the internet and i would just rather know first hand. thanks so much! ~leigh

Hi. Everyone here either has spina bifida or loves someone that does so we all can help you out. It is a really overwhelming time and there is a wealth of information here for you to read. Just take time to slowly absorb it all and get to know us through our many posts and you will be giving advice yourself soon :)

[Dodger67]

Hi Leigh
Welcome!
First rule of having a baby with SB: Ask questions!!!!!

[Barb]

I also wanted to point out that if you look at the bottom of the home page you should see the links to the books that help support the board *promotional ad over, lol*

[leigh828]

my first question is this...(and i'm not so sure that i'm ready to hear the answer to this, for some reason this is the harderst thing for me to take) do all babies, kids, adults with SB have continence problems? from what i've been reading it seems as if the answer is yes, and i don't know why but this is the things that is bothering me the most. i feel like everything else we can deal with but that this will be our biggest obsticle. thanks

[angel]

my first question is this...(and i'm not so sure that i'm ready to hear the answer to this, for some reason this is the harderst thing for me to take) do all babies, kids, adults with SB have continence problems? from what i've been reading it seems as if the answer is yes, and i don't know why but this is the things that is bothering me the most. i feel like everything else we can deal with but that this will be our biggest obsticle. thanks

Hi Leigh,

Let me introduce myself. I am Angel, 31 years old SB Myleo level L4/L5. I am married, have a 12 year old son and 12 year old step son, and own my own business.
As for your question i have never heard of anyone that didn't have some sort of imparment with the bladder or bowels. Not to say there isn't someone but I think it would be rare.
It is just something you learn to work through just like everything else. You learn what works, what doesn't and you adjust the best you can. There are many who have it under control to the point that it is at best a minor inconvience.

Angel

[Dodger67]

I can confirm what Angel said - to not have any continence problems is extremely rare. The nerves responsible for continence come from near the very end of the spinal cord, any lesion above it will have an effect.

Correct me if I'm wrong but I believe the bladder and anal spincters nerves come from either S1 or 2?

[angel]

I can confirm what Angel said - to not have any continence problems is extremely rare. The nerves responsible for continence come from near the very end of the spinal cord, any lesion above it will have an effect.

Correct me if I'm wrong but I believe the bladder and anal spincters nerves come from either S1 or 2?

I got totally screwed in that area. Not only do i have SB i also have sacral agenesis so i have nothing from L5 down there is nothing lol.

Angel

[nanna]

hi, i'm new to this site, first time posting. i am currently 19 weeks pregnant and found out yesterday that my baby has spina bifida. i'm not really sure where to begin. i know that the opening in his spine is at L2. does anyone else have any children with this that can shed some light on my situation? i guess i just want to know what i can expect when he is born. there are so many confusing things that you read on the internet and i would just rather know first hand. thanks so much! ~leigh


Hi Leigh, First of all congratulations on your pregnancy. My daughter gave birth in september to my first grandchild he was born with SB and what a joy he is. At the 22 week scan my daughter was given the news and the option to terminate. She was given lots of negative speculative opinions all of which were untrue putting her through weeks of heartache. We learned that even through lots of scans and mri scans consultants disagreed and gave conflicting opinions. My advice to you for what its worth is if you are going ahead with the pregnancy try to enjoy it and keep an open mind learning as you go. No one can tell you how your baby will be till after he is born as we are all individuals, and what will be will be. When the time comes you will cope as my daughter has, and all that you learn now helps you understand whats happening when the time comes. Good Luck x

[Barb]

Great advice :)

[leigh828]

thanks for the advice nana! we are doing really well, and can hardly stand the wait! we just want the next 3 months to fly by so we can meet our little guy! i hope that all is going well with your grandson!

[XoBLoNDiE85]

Hi! My name is Laura, mom of 3....youngest,baby hannah 3 months, has SB. So we are fresh outta this or should i say kinda still in it haha! I will say it was VERY scary during my pregnancy and the first weeks of her being her! She is still still being closely watched because of her hydrocephalus....no revisions so far just adjustments. We actually went today and she is doing great (ventricles are shrinking) Praise the Lord!!! Hannah is cathed every 4hrs (i was most afraid of that and lemme tell u its soooo easy) She is a lot of work and we stress but she also such a blessing to our family!!! She is our precious gift from God!

[Dodger67]

Good to know all is well with Hannah!