Hi Sara-
I am 23 and have spina bifida S1 with hydrocephalus diagnosed at
birth in my case I had to have the closing surgery..but I have
actually heard of something similar to your case where they wait and
see if the hole will close it self. Good luck to you
Maureen :)








--- In spinabifidacentral@yahoogroups.com, "Amy"
<amyandchris1023@y...> wrote:
> --- In spinabifidacentral@yahoogroups.com, "mrsfred673"
> <mrsfred673@y...> wrote:
> > Hi Sara!
> > Congradulations on the birth of your son. I have a son, Jacob
who
> is
> > 5 mos. old. He did have an open cyst on his back and had to have
> > surgery when he was just a day old. I can tell you, depending
on
> > the size of the wound after surgery, the hardest part may be
> keeping
> > it clean. Jacob's incision was very low, it took several
attempts
> > to dress it before we found away to keep,"poo" out of it. Have
> you
> > started to research spina bifida yet? It can be very scary, so
> far
> > Jacob is has normal as can be but, there are alot of problems
that
> > can arise from having spina bifida. We are waiting until he is
> older
> > before we worry about it too much but he goes to a special
clinic
> > every few months and is evaluated by nuerosurgeons, urologist
and
> > orthorpedic surgeons. So far they have nothing to suggest as far
> as
> > problems or needed surgeries. Good luck and feel free to email
me!
> >
> > --- In spinabifidacentral@yahoogroups.com, "rbbsgrl1999"
> > <sabyrd76@m...> wrote:
> > > Hi to all.
> > > My name is Sara and I have a boy just over 2 months old who
was
> > born
> > > with Spina Bifida. The doctors say it is a rare and minor
case.
> He
> > has
> > > a (Closed) Cyst on his lower back, just above his little
> bottom.
> > They
> > > say the lower the better, well, it is all the way down, thank
> > > goodness. The doctor is going to do surgery when he is older
> > (they
> > > said because it wasn't leaking?? that they wanted to wait). I
> am
> > not
> > > at all educated with Spina Bifida except that i know it is
when
> > your
> > > spine isn't grown right or completely.... if I'm wrong please
> > excuse
> > > me and let me know. I would appreciate some info and advice
> > anyone
> > > has to offer. I'm a new mom and this just made things a little
> > more
> > > challenging. I've made up bubble wrapped (pallets) for him to
> lay
> > on
> > > in a carseat, carrier and his stroller, the bathtub and just
to
> > lay on
> > > his back. The diaper is the trickest.. Because the Cyst is
> right
> > > there at his waistline. Well, I just wanted to introduce
myself
> > and
> > > see who else is out there. Please respond with any advice or
> info
> > you
> > > have. Thanks, Sara
>
>
>
>
>
>
>
> hey sara,
> my name is amy i have a baby girl who is a little over 3 months
she
> had an open cyst on her lower back, and also had hydrocephalas she
> had a vp shunt inserted at 3 weeks. she also goes to special
clinics
> every few months and is also being seen by pt for club feet the
> hardest thing i've found is not knowing what the outcome will be
as
> far as how much mobility she will have she moves her legs great
and
> so far has normal use of her kidneys and bladder so it is mainly a
> wait and see game the most advice i can give to you is to be
patient
> and ask the doctors lots of questions. feel free to email me if
you
> want to talk about anything or ask me any questions.
> amyandchris1023@y...