New advances and procedures concerning Hydrocephalus are constantly being developed. Be an advocate for your child!
What is Hydrocephalus?
Hydrocephalus is caused by the excessive accumulation of cerebrospinal fluid. Characteristics include:
Increased intracranial pressure
Dilation of the ventricles (the cavities of the brain)
Rapidly increasing head circumference
Downward deviation of the eyes
Full or bulging fontanel (the soft spot on an infant's head)
Prominent scalp veins
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:
Severe nausea and vomiting
Difficulty waking up or staying awake
Sudden decline in behavior and/or school performance
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.
How do I get help for my child?
Your child should be treated by a qualified craniofacial medical team at a craniofacial center. Currently, FACES has information on many of these teams. This is by no means a comprehensive list of all the craniofacial teams.
Please Contact Us 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. (Facebook has dozens of private groups specific to conditions. Try searching Facebook with a few different key words such as "craniofacial" or "burn" and find groups of parents and others with similar differences.) The information below will help you get started.
FACES: The National Craniofacial Association
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 (Apply Here). Resources include newsletters, information about craniofacial conditions, and networking opportunities. Contact Us for more information.
Excellent resource that provides fact sheets, newsletters, support groups, resource guides, physician guides, and internet discussion groups.
Phone: (888) 598-3789
National Hydrocephalus Foundation
Quarterly newsletters for individuals affected by hydrocephalus, their families, and professionals. They also have videos and cassettes available.
Phone: (888) 857-3434 or (562) 924-6666
Pediatric Hydrocephalus Foundation, Inc.
This organization is dedicated to providing support, educational resources, and networking opportunities to patients and families.
Phone: (732) 634-1283
National Health Law Program
Provides extensive information on health care law affecting families with children who have special health care needs.
Phone: (202) 289-7661
Children with Facial Difference:
A Parent's Guide
Written by Hope Charkins, MSW. Excellent resource for parents to help them cope with medical, emotional, social, educational, legal, and financial challenges presented by facial differences of their children. Order from Amazon.com if you cannot find it in your local bookstore.