[gkasche]

I would like to hear from anyone with experience parenting a child with Spina Bifida. We are praying about a little boy a few months old with this condition. The lesion on his back was closed very soon after birth. I have heard nothing so far about a shunt. He is moving his arms AND legs freely. He is described as having "good" reflexes in his lower extremities and responds with a happy reaction when feet are tickled. His surgery was uneventful and he is listed as "no problem" baby. I know that the size of the lesion and the degree of nerve/spine exposed is a factor. Does the fact that he has "good" movement and reflexes in his legs mean he will be able to walk at some point? Also...at the age of 5 months...can they tell whether he has bladder and bowel stimuli for normal function? ANYONE with advice...I would love to hear from you.
Karen

[cjhawk38]

I am the adopted mom to 2 girls with spina bifida. If you knew where the lesion was I could tell you more about his nerve damage. The fact that he moves his legs is a sign that he will be able to put weight on his legs but without knowing the level that's all I can tell you.

All SB kids and adults have bowel and bladder problems because those are the last nerves in the spine. Self cathing and high volume enema will make him dry and avoid accidents.

Any questions let me know.

Cindy

[blessedmomee]

I am kinda late posting, and hope that you are still considering or are in the process for this special little boy! We have adopted two boys with SB. G came home at 2mo. of age and had a lesion in the lumbar region. He had successful corrective surgery at 3mo. of age. E came home at 6mo. of age, with a lesion and several lipomas in the T and L area. His surgery took place at 8mo. of age, due to other medical conditions that needed dealt with before surgery. E's prognosis was grim in relation to lower extremity gross motor skill.
Long story short, both boys have overcome and proven the prognosis' wrong. They just turned four, and have been walking since 16 and 19mo. of age. E pottytrained at 3yrs. of age. G just pottytrained at 2wks. ago!
It is important to remember that there are different forms of SB, and not all will involve loss of bladder/bowel control. No two people are alike,and a prognosis is not always definite(we also have a 4yr. old dd who was supposed to be healthy, and has a condition that leaves her without the ability to communicate or walk). Dh and I adopted our boys completely comfortable with the fact that they may never walk. We accepted that possibility, and just wanted to see them reach their optimal potential. We are thrilled with how well they are doing, but would have been fine no matter what the outcome.
Hope this helps a little. Please update!

[roselee]

Last year, I worked in a school for two years with a girl who has S.B. Yes, there are many degrees of S.B. Most individuals with S.B. have nonverbal learning disabilities but are good verbally. She is a very smart young girl (age 7).

She brought this extreme joy to everyone. Her mom was the biological mother, but she also fostered up to two to three other special needs kids at a given time. I don't know, but I think this probably helped this little girls self esteem.

This girl was extremely funny, she had a walker but everyone helped her out when needed - although she was very strong willed and independent so she first tried to do things herself. She always made me laugh.

So, that is my experience with this lil' one. I completely miss her!!!

[WishinandHopin]

I don't have any experiencing parenting a child with SB but I hope to adopt a little boy with it.