I'm new here. Mom of 2 children with SB

[pjtmom]

Hi, I just found this website. I have 3 children-2 of them have SB. They are 5 yrs old and 1 yr old. Anyone else have more than one child with SB, or another sibling with SB? I know it's not very common...but just curious if anyone on here has more than one person in the family with SB.

[Barb]

Hi. It is great to meet you. I only have one with SB~which is enough for me :)

Glad you found us and I look forward to talking to you more!

[kali]

hi and welcome, I have a 9 year old son with sb, no one else in my family has sb.

[milliondollarcowgirl]

hi,im new here too,. i dont have spina bifida, but my husband has spina bifida occulta and two of his three siblings had/have spina bifida and use wheelchairs. so thats 3 out of 4. do you have twins?

[mommy2cnj]

My name is Pam. I have a 12-going on 20 son with SB, as well as a 9-yo daughter with SB. I also had a brother who passed in infancy due to complications of SB. I, too, am always looking for other parents with children who have SB (whether it be 1 or more). It's not all that often, however, that you come across someone who has more than 1 child with SB. Please feel free to email me at any time. :)

[angel]

Hi I have SB and my son has a NTD. It has been called so many different things. It has been called caudial regression syndrome, and hemi vertibra. I took him to the chiropracter the other day for his first visit and he took an x ray. He said i see the spina bifida occulta. My jaw hit the floor because that is the first time ANYONE has ever refered to him as someone with SB. No one seems to be able to give me a straight answer. If that doctor is right then we both have it. I have level L4/L5 myleo.
I haven't heard of very many people that have more than one child with SB nor many other mom's who's children had it as well. My son is in much better shape than i am of course. I am not doing bad at all life is great but my son can walk without aid. I use crutches and a wheelchair. I am very eager to hear more!!

[Barb]

Welcome to the site!

[mommy2cnj]

Hi I have SB and my son has a NTD. I am very eager to hear more!!

My son is level L3-4 and my daughter is L4-5. Son was originally diagnosed as L4-5 and daughter L2-S1. They have recently re-diagnosed them, due to their ability and function. My brother (dec.) was in the T-region (very servere). Not sure the exact form of SB (I was 3.5yo at the time). Any questions you may have, feel free to contact me.

[Holly]

Welcome to SBC!

[lolathechecker]

im pregnant with a baby with sb, and afterwards im looking in to the possibility that i may have sb occulta. it would explain alot of strange symptoms i had as a kid. welcome to the site!

[angel]

Thanks so much for the welcome. I warn you now this post could get long lol. Did you go through the tests when you were pregnant. I did i went through the blood tests and i had 3 amnio's done and i think i have about 50 pictures of his spine from the back view. All of his openings (and there are quite a few) are from the chest view.
I thought it was something totally different. I thought it was a big coincidence. The older he gets i am seeing that we are so similar that i am sure there has to be something genetic going on in my family. I don't have a tail bone he don't have a tail bone. He had a spinal fusion done in january cause he was missing a small bone that made his neck unstable and i found out a month ago that i am missing the same bone. It is just to similar.
Now for my other point. I mean no insensitivity at all in my questions i mean i have sb and i have always been open to any question and i assume you are the same. How hard is it to have 2 or more children with SB? Were you afraid that after the first one the others might be affected? I haven't had anymore because i am afraid of that. Not that my life has been bad and i can do everything for myself i raised my son alone till he was 8 but i just don't know if i could handle 2 espically with the range cause sb can go from one extream to another ( i have found that in me and my son's cases.)
I facilitate a support group for parents who's children have SB in my area. I have found some didn't have more out of fear and some did and they didn't have it. I feel like i am in somewhat a unique position i know what it is like to be the patient and now i know what it is like to be the parent.