Spina Bifida

Alexandria - posted on 11/19/2010

hi. i have a son who is 3 years old and he has spina bifida with hydrochephelus. i worry about dating and the workplace for him in the future as well. i believe they are stronger then we are. =)

Alexandria - posted on 11/19/2010

i have a son who is 3 and has spina bifida as well. his is also above his butt. he also wears AFOs but to assist in walking intill he gains better control. my son usually tells me when he has to go to the bathroom or after the fact but the doctors are still looking into using a catheter for him until his bladder pressure is under control.

Kathleen - posted on 09/17/2010

Hi! I have an 11-year-old daughter with Spina Bifida. She is very high functioning, but uses AFOs and a walker for long distances. No wheelchair, except when we go to amusement parks. She is very outgoing and makes friends easily, thank God! I do worry about the future (bowel and bladder, dating, etc.), but really try to focus on NOW and taking one day at a time. It has been a very interesting journey for us, beginning with an inutero surgery to close her SB lesion at 24 weeks gestation. But she is such a blessing and I wouldn't trade her for the world! ♥

Hrafnhildur - posted on 09/07/2010

hallo i am a mom of a 3 year old girl she hase spinabifida too and so do I my level of spinabifida is L3L4 and my girls hase the same level of spinabifida she is walkink whit a walker she is starting to let go a litlle when she walks and I love that me and my baby girl have the same problem bladder and bowel I whuld love to bee in tutch PS sorry fore my spelling hehe

Nikki - posted on 07/11/2009

Hello there. My daughter Lily is six and was born with SB Myleomenigeocele T12- L4. She does not walk but she can crawl and is great with her wheelchair. Bowels and bladder are a biggie around here too, and we are looking into having the ACE and Mitrofanoff procedures done with her next summer.
She is entering first grade at the end of August and though reading has been a struggle for her she does do well in all other areas. She's sweet, bright, and in general a great kid. :)
We just started working with a new physical therapist and we are finding out that she can do a lot more than anyone previously thought so this is a very exciting time in our lives.

Lynda - posted on 07/11/2009

Hi to all you mums out there with children who have Spina Bifida. My daughter was born with Myelomeningocele & Hydrocephalus. She has just turned 29 & although she is in a wheelchair has a job working with children in a nursery.
Although we have had some problems over the years she has a pretty good life & has coped really well considering they only gave her 3 days to live!
So i have had some experiences & if i can help anyone with anything, just ask!

Veronnica - posted on 07/09/2009

My 3 year old has Spina Bifida Occulta (hidden). She has been walking for almost 12 months now, can jump. She has global developmental delays, but we are working on them. Her ankles roll in a bit, but so far she is still moving ok. Slight limp in her running but no-one is worried about that, neuro just said if we have any concerns about her legs to take her straight into him, but he seemed very happy with her at our last appointment, We don't seem to have any bladder issues, but we do have chronic constipation which generally results in manual removal. Her motions are very soft, she just can't move it through...



She has a very deep dimple above her buttocks that leaked when she was 2 days old (which is how we got on our Spina Bifida path). She had surgery to release her spinal cord at 10 months of age and has been progressing fabulously ever since!