----- Original Message -----
From: "valdeznelda" <valdeznelda@...>
To: <hydrocephalus@yahoogroups.com>
Sent: Sunday, August 20, 2006 6:13 PM
Subject: [hydrocephalus] Hi , New Here


> Hi, my name is Nelda and I have a son who was born 26 weeks
> premature,

I don't wish to disbelieve you, but are you sure the correct number is 26?
It most certainly is a rarity and would give a kid a real fight for survival
(not to mention a conveniently short pregnancy).
However, if I'm to believe my eyes, that's one ultra-preemie and I don't
envy you.

> has hydrocephalus due to a grade IV interventricaular
> hemorrhage during birth. He has a VP shunt placed when he was 10 mos.
> old. He's now 4 yrs.old.

Now I'm puzzled. The more I hear things the less trust I have in the medical
profession. Why did it take them so long? True I was 4 months old before
getting my shunt, and in retrospect I consider that to be excessive
(although back then I guess not many doctors were familiar with them.)

> What the Neurosurgeon did was to adjust the strata valve with
> a magnet and it's now in the lowest.

How convenient. The things they can do these days. Except a cure.

I'm kinda concern because it
> happens every year and the NS told me that if it happens again, they
> might change the valve which means surgery. I'm scared 'coz the first
> time they put the VP shunt, he almost died.

Well... the good news (yes there actually is some good news) is that now
that his shunt is already in place, as opposed to the first installation, it
shouldn't be quite as drastic a procedure. Make no mistake - it will still
be a lonely and painful adventure that only your son can endure. You can be
there physically, but ultimately he's the one to go through it. If you've
ever had abdominal surgery then you have had a sample of what it's like (if
you had a C-section then that should be about right - only he won't be
rewarded with an adorable little baby at the end of it all.

> I'm so glad I found this
> site because it helps me to vent my concerns and also it educates me
> about what hydrocephalus means. I also want to know it having a VP
> shunt due to hydrocephalus or having hydrocephalus itself considers a
> person as disable.

OK here's an interesting point. SOMETIMES people like to make blanket
statements, either out of ignorance or because it makes them feel better or
they will hope it makes YOU feel better. Don't believe it. The honest truth
is that everyone is an individual - even those of us with hydrocephalus. Oh
BTW I said I was 4 months old when I got my shunt. I'm now 39 years old, my
last shunt revision was in 2002 (my first in 16 years) I'm married and have
a 5 year old daughter. She does NOT have a shunt although like most of my
relatives, she wears eyeglasses - had them since she was 10 months old.

So... we with hydrocephalus have one thing in common - the condition.
Actually some people with the mildest form may not even have a shunt. As
well, and this is important, the abilities of each and every one of us is
unique. I think back to when I was in college. I was having trouble and
asked the teacher for help. He replied that there was another student with
hydrocephalus and she had no problem in class whatsoever - so he concluded I
shouldn't need any help either.

I had to drop out.

Yes some can do quite well. Some have such mental deficiencies that they
will never lead an independent life. In short, we're all human. It's not
always possible to tell ahead of time what a person's capabilities will be.
My recommendation: Don't push. Just encourage. I wish my parents were that
way with me. That being said, it depends on how difficult it is for a
person to cope with every day living, whether or not they may be regarded as
"disabled." Some people here may indeed think of themselves (or their
child, depending on who has the hydro) as disabled. Others wouldn't dare
think such a thing. It's not automatic. My parents didn't regard me as
having a disability. As such when I was having problems in school they
labelled me as "lazy". I had to be my own advocate. Believe me, it's a
whole lot easier if you feel someone else is on your side, so I hope you're
more supportive than that. From the sounds of it, you certainly are.

> Now he is considered disable because of his
> prematurity and having developmental delays. I don't know if it is
> also because of having a shunt. I know some of you doesn't have dev.
> delays but did they consider you as having a disability of some sort?
> (I don't mean to offend anybody). Thanks and hope to get some anwers.

Actually having the shunt in and of itself isn't a sign or criteria for a
disability, but rather it's treatment for the condition (hydrocephalus)
which has the disabling aspects. That is, if it somehow prevents your son
from functioning in a normal/usual/standard fashion, that can be considered
a disability
But... if it's a delay AND he can catch up somehow, that will be in his
favour. I fear that I'm making it more confusing rather than easier.
So let me re-phrase: if he functions like most four year old children do,
then he doesn't have a disability, unless there's an aspect where he has
considerable difficulty (eg. walking, hearing, talking, swallowing, etc.)
My little Zophie was born premature but she doesn't have a disability. She's
farsighted - but that's about it. Then again she was only 3 weeks early.
But I don't regard myself as very coordinated. I find it difficult to stay
organized. It's difficult for me to think very quickly (so the magic of
email is wonderful) and my memory is quite poor. I'm nearsighted, but as I
said, bad eyes seems to run in the family. However, my lack of left
peripheral vision is an exception. My sense of taste is quite unusual, it's
hard to concentrate, I have sleep apnea and depression (although depression
may also have a genetic factor.) You will find everyone's mix of symptoms
to be unique for them alone. Some regard it as a disability, some do not.
Just don't let someone else tell you what to think.

-Ugly Sean