Special Needs

Spina Bifida Moms

Any moms with LO's here with SB? I posted in October after DS was born with a MM (We had no idea. All testing we had never showed any indication of him having SB). Since October, he has had the defect closure, an EVD, a VP Shunt and a wound washout, a wound exploration and today he is having a revision.

I'm just wondering if there is anyone else on this board. I lurk once in awhile, but never see any posts pertaining to SB

Thanks. :)


Read about Chase and his journey with Spina Bifida
Little Chase Bryan

Re: Spina Bifida Moms

  • One of my triplets has SB.  She is 4 years old.  I'm sorry your son has to undergo a revision. 

    There is a very active SB board over at babycenter.

  • I'm so sorry your little one has had to go through so much and that you weren't able to be better prepared for it.

    Peyton had a tethered cord and had spinal surgery in July. We are going to the spina bifida clinic this month as her cord has caused a lot of problems similar to that of which children with SB have.  She has trouble walking, leg pain, and a lot of urology issues from it.

    I may check out the board PP mentioned as well.

    Good Luck! 

    DD1(4):VSD & PFO (Closed!), Prenatal stroke, Mild CP, Delayed pyloric opening/reflux, Brachycephaly & Plagiocephaly, Sacral lipoma, Tethered spinal cord, Compound heterozygous MTHFR, Neurogenic bladder, Urinary retention & dyssynergia, incomplete emptying, enlarged Bladder with Poor Muscle Tone, EDS-Type 3. Mito-Disorder has been mentioned

    DD2(2.5): Late term premie due to PTL, low fluid & IUGR, Reflux, delayed visual maturation, compound heteroygous MTHFR, PFAPA, Bilateral kidney reflux, Transient hypogammaglobulinemia, EDS-Type 3

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