|
The National Craniofacial Association |
| P. O. Box 11082 | * Chattanooga, TN 37401 |
| 800- | 332-2373 |
Hydrocephalus
What is Hydrocephalus?
Hydrocephalus is caused by the excessive accumulation of cerebrospinal fluid. Characteristics include:
Why did this happen?
Hydrocephalus is the result of an imbalance in production and absorption of cerebrospinal fluid. It can be the result of development anomalies, infection, injury, or brain tumors.
Will this happen to children I have in the future?
The chances of having another child with hydrocephalus are very small.
What kinds of problems could my child have?
In addition to the physical characteristics common to hydrocephalus, your child may have the following problems:
Will my child need surgery?
At this time, a long flexible tube called a shunt is passed through the brain to the abdomen. This allow the excess fluid to drain away from the brain. Either enough tubing is placed to allow for a child's growth or additional length will be added two or three times during periods of rapid growth.
New advances in procedures to treat hydrocephalus are continually being studied. Be an advocate for your child!
How do I get help for my child?
If your child's hydrocephalus occurs in connection with a craniofacial anomaly, your child should be treated by a qualified craniofacial medical team at a craniofacial center. Currently, FACES has information on thirty-two craniofacial teams located in 20 states, the District of Columbia, and Canada. This is by no means a comprehensive list of all the craniofacial teams. Please contact FACES for details.
Am I alone?
No! There are many families and organizations who will be glad to talk with you and help
you with information and support. Don't forget books, videos, and websites. The listing
below will get you started.
FACES: The National Craniofacial Association
P. O. Box 11082
Chattanooga, TN 37401
(800) 332-2373
email: faces@faces-cranio.org
We provide financial support for non-medical expenses to patients traveling
to a craniofacial center for treatment. Eligibility is based on financial and medical
need. Resources include newsletters, information about craniofacial conditions, and
networking opportunities.
Hydrocephalus Association
870 Market Street, Suite 705
San Francisco, CA 94102
(888) 598-3789
Email: info@hydroassoc.org
Excellent resource that provides fact sheets, newsletters, support groups, resource
guides, physician guides, and internet discussion groups.
National Hydrocephalus Foundation
112413 Centralia Road
Lakewood, CA 90715-1623
(888) 857-3434 or (562) 402-3523
Email:nhf@earthlink.net
Quarterly newsletters for individuals affected by hydrocephalus, their families, and
professionals. They also have videos and cassettes available.
The Hydrocephalus Foundation, Inc.
910 Rear Broadway
Saugus, MA 01916
(781) 942-1161
Website: http://www.hydrocephalus.org
Email: HyFI1@netscape.net
This organization is dedicated to providing support, educational resources, and networking
opportunities to patients and families.
Listed below are two very helpful internet resources:
http://neurosurgery.mgh.harvard.edu - This site provided by Neurosurgical Service of Massachusetts General Hospital provides an excellent forum for patients and families. Click through to the Hydrocephalus forum.
Children with Facial Difference: A Parent's Guide.
Written by Hope Charkins, MSW. Order from Amazon.com
if you cannot find it in your local bookstore.
Excellent resource for parents to help them cope with medical, emotional,
social, educational, legal, and financial challenges presented by facial differences of
their children.
National Health Law Program
1101 14th Street, NW, Suite 405
Washington, DC 20005
(202) 289-7661
Website: http://www.healthlaw.org
Provides extensive information on health care law affecting families with children
who have special health care needs.
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Last modified on: Monday, April 27, 2009 03:13 PM
