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Spina Bifida

Anyone else with this and how severe?


  • 1BentSpine
    1BentSpine Member Posts: 12 Connected
    I know this is well after you posted Stacy, but I just came across this.  I was born with spiria bifida. It is the most severe kind because I had a meningimyelocele.  However,  because of the location of the opening in my spinal column,  my characteristics are milder then others.  I deal with no bowel or bladder control. And have had surgery to create an urostomy.  I also have hydrocephalus, but was never shunted.  Because of the hydrocephalus, I do have learning difficulties.  In total  i have had 5 major surgeries to improve my quality of life.
    I would be interesting in hearing what characteristics of spina bifida you deal, and what strategies you use to make the best of your life.
  • April2018mommy
    April2018mommy Posts: 3 Connected
    My son was born with SB a year ago. It is pretty severe. His defect was at the top of the spine (in other words, T12/L1). He appears to have no ability to manage his bladder function or walk unaided either. In terms of surgery, he has had the standard back closure operation as well as a surgery on his feet
  • thara
    thara Posts: 49 Connected
    Late to the party but my son has SB. He has the open defect type. As a result of his disability he has flaccid paralysis and virtually no bowel and bladder function. But he does not have hydrocephalus. We were on hydro watch for a long time but he never required surgery for it. However he did have bilateral clubbed feet (it was detected by ultrasound by a tech). Noah has a L1 lesion with likely T12 nerves impacted. Who knows as SB is a snowflake disability for good reasons. 

    I found out about his birth defect at my 20 week scan. Today he is doing well so far in therapy. He is cathed frequently. None of this is what I expected but life is unpredictable. He and his twin sister are nearly two years old. They love to keep us on our toes constantly as well. 
  • bootmandy
    bootmandy Member Posts: 19 Courageous

    watching the horizon programme on spina bifida. I was born in 1970 so my mum was told I would have an awful life. what a load of tosh.

    but what I really wanted to say is I am the only one in the family with this and I am from a big family. I went on to have 3 gorgeous children the youngest is now 22 and they are all healthy and none of them have spina bifida. so pleased don't believe all that the doctors tell you x

  • 1BentSpine
    1BentSpine Member Posts: 12 Connected
    I also have Spina Bifida.  I was born in 1962, and my parents were told that if I survived I would have a lot of handicaps and could be "retarded" . as it was referred to then.  I understand now that there are so many things the doctors cant predict as far as the severity of having SB, so they tend to give the parents the worst case scenario.  A lot of dealing with spina bifida is taking a wait and see position, because you have to watch the child go through the different growth stages and see what they can or can not do.  I do have hydrocephalus, am not as mobile as non disabled people, and also deal with a learning disability as a result of having hydrocephalus.  I also have a urostomy (stoma) because the muscles that control bladder and bowel function never worked.  Having been born in 1962 , I believe I am one of the older people living with SB, because from what i have read and been told, babies didnt usually survive before then, due to lack of knowledge and medical procedures to help with the SB.  Doctors arent telling you the worst case scenario to be mean, but because of not knowing the full scale of the disability right away, and if its an ob/gyn, lack of knowledge on their part.  Its best to have a neurologist involved in the babies care, because they will be able to give the best assessment of the babies abilities in the beginning.  Hope this helps.


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