Spina Bifida Support Group

Spina bifida describes birth defects caused by an incomplete closure of one or more vertebral arches of the spine, resulting in malformations of the spinal cord. The spinal membranes and spinal cord may protrude through the absence of vertebral arches (called clefts).

97 Members
464 Posts
0 Online
Children's Physical Health
/ Spina Bifida Support Group

just found out my son has spina bifida

deleted_user
deleted_user
my wife and I just found out 9 days ago when our son was born about this. It is really hard but he is showing good sighns. He is moving his feet alot and toes and has pushed his catherter out of his bladder a whole bunch. I know we are lucky so far this has just been painfull. any help or sugestions would be great
deleted_user
deleted_user
Welcome to the group of the very best people you will ever meet. We will do our best to help you anyway we can.
My daughter will be 33 yrs old next month so we have been through a lot. Just treat him normal like you would any other child. There is more they can do for children born with SB today than there was 33 yrs ago. As a hospital Chaplain I have seen so many wonderful improvements. My daughter was able to get a programmable shunt. IT is so wonderful. This year she started having really bad headaches. She went to the doc and he reprogrammed the shunt with a magnet. No surgery. Praise God that He gives doctors wisdom to help our children. Blessings, Angelunaware
deleted_user
deleted_user
thank you so much my son is nset for mri to see if he is ging to need it i will ask if we can get a progamable one as well.
I will treat him as normal I ove him so much its so hard as I feel powerless in this whole deal I want to fix it and I cant. I wish I could bethe one going through it instead of him. thank you for the reply and god bless
deleted_user
deleted_user
I know how you feel. I felt and still feel the same way that you do. Children bounce back quicker than us adults. I wrote a book about my daughter and my expereince. My doc says it is the best teaching book he has read. there is nothing medical in it, just the emotional, mental, spiritual, physical and fianancial impact upon our family and how we survived through God's grace and goodness. You can find it at my website www.victoryonthethirdday.org I will be praying for yoru and your family
deleted_user
deleted_user
Just be patient and positive. I have Spina Bifida Cystica, am 31 yrs old. Until recently I have been very lucky. Never in a wheelchair (except after surgeries and stuff--but never for a long period). Full walking ability. Self catheterize 6x daily. Just get good docs and everything will work itself out!
deleted_user
deleted_user
My husband and I also have a little boy with spina bifida. He was born last valentines day and is such a trooper. Please let me know if you have any questions-- you and your wife are in my prayers.
Posts You May Be Interested In
  • irishwriter

    come unwind in the bp lounge

    Posted by: irishwriter
    Last Reply: kisses2016
    7992
    theatre and I are there already. I'm having a very berry tea with crackers, cheese and cherry tomatoes and she's having a joint with some beer and we're both on really comfy recliners on thick pile carpet. we need some help with the decor if anyone is around??
  • Rizen

    Walk a Day

    Posted by: Rizen
    Last Reply: mujicaptsd
    2560
    I'm trying to exercise daily. I was doing fairly well until I sprained my ankle 2 weeks ago but now I'm getting back on the horse. Today I walked over a mile with my arm weights that are about 22lbs total. I was out of shape and it was hard on my arms. I also did my 30 situps. I'm also going to drink a lot of water and try to eat healthy. I do tend to have a sweet tooth but I'm cutting...