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Most people know some family with a Hydrocephalic child. Some
people have even seen children with very large heads; some are
retarded or developmentally delayed, but others appear relatively
normal. As medical technology improves, more children with Hydrocephalus
grow up looking normal. Ironically, their struggles to combat
frequent recurrences, their frustrating search to find educational
programs that can help their earning disabilities, their fear
of not being insured when they reach 18 because of their pre-existing
condition, and the incredible strain on their families, all
may go unnoticed. But there are many poignant testimonials that
drive home the devastating impact of Hydrocephalus on children
and their families.
Hydrocephalus
is one of the most common congenital defects of the central
nervous system. These defects occur 1-8 times in every 1000
live births, and are often associated with Spina Bifida, another
congenital defect that involves the vertebral column and spinal
cord. About 1500 children with Spina Bifida are born each year.
The annual cost of treating childhood Spina Bifida and Hydrocephalus
in the United States as been estimated to be over $200 million,
but these estimates do not take into consideration the financial
and emotional toll that burdens each family.
Not only
is the prevalence of Hydrocephalus high, but the very high frequency
of shunt malfunction due to blockage or infection makes Hydrocephalus
a particularly insidious problem. Often children must endure
15-50 or more surgeries to repair a non- functioning shunt,
and pediatric neurosurgeons devote a majority of their practice
to the treatment of Hydrocephalus. The Children's Hospital of
Michigan is the busiest Hydrocephalus center in the country,
with nearly 1800 Hydrocephalus-related surgeries performed annually.
Although
this tragic disorder can be diagnosed in early gestation or
infancy, it is disheartening that today many affected children
cannot be treated properly because so little is known about
the brain damage caused by hydrocephalus. Neurosurgeons and
engineers alike constantly strive to develop better drainage
systems for hydrocephalic patients. Nevertheless, their expertise
is severely limited by the lack of data on brain damage created
by hydrocephalus. For example, we still do not have all the
answers to important questions like:
- What
causes Hydrocephalus?
- Why do some children with hydrocephalus experience very
few problems, while others need endless shunt revisions?
- Can
injured neurons be rescued or protected?
- Are the connections between neurons severed or altered
as the brain is distorted during hydrocephalus?
- Can these connections be protected during hydrocephalus
or encouraged to regrow after a shunt is placed?
- How does hydrocephalus affect brain chemistry, especially
for the critical neurotransmitters that allow neurons to communicate
properly?
- Do
permanent "scars" form in the brain during hydrocephalus?
- Do these scars change the mechanical properties of the
brain, making it more "stiff", for example, and thus creating
the need for a different type of shunt?
- Can neuron damage and scars be prevented by supplemental
treatments that could be given along with the shunt?
- How can infections be better controlled?
- How can tissue growth into and around shunts be prevented?
- Can diagnosis and monitoring be improved?
- Will very early, perhaps intra-uterine, treatment be
more effective?
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