Important
It is possible that the main title of the report VACTERL with Hydrocephalus is not the name you expected. Please check the synonyms listing to find the alternate name(s) and disorder subdivision(s) covered by this report.
Synonyms
- VACTERL Association with Hydrocephalus
- VATER Association with Hydrocephalus
- VACTERL-H Association
General Discussion
VACTERL with hydrocephalus is an extremely rare genetic disorder in which the multisystem features of VACTERL association occur in addition to hydrocephalus. The term VACTERL is an acronym with each letter representing the first letter of the more common findings seen in affected children:
(V) = vertebral abnormalities
(A) = anal atresia
(C) = cardiac (heart) defects
(T) = tracheoesophageal fistula
(E) = esophageal atresia
(R) = renal (kidney) abnormalities
(L) = limb abnormalities
Hydrocephalus is a condition in which accumulation of excessive cerebrospinal fluid (CSF) in the skull causes pressure on the tissues of the brain, resulting in a variety of symptoms. VACTERL with hydrocephalus is inherited as an autosomal recessive or X-linked recessive trait. VACTERL with hydrocephalus is a distinct genetic disorder separate from VACTERL association, a nonrandom association of birth defects.
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Resources
March of Dimes Birth Defects Foundation
1275 Mamaroneck Avenue
White Plains, NY 10605
Tel: (914)428-7100
Fax: (914)997-4763
Tel: (888)663-4637
Email: Askus@marchofdimes.com
Internet: http://www.marchofdimes.com
National Hydrocephalus Foundation
12413 Centralia
Lakewood, CA 90715-1623
USA
Tel: 5629246666
Fax: 5629246666
Tel: 8888573434
Email: nhf@earthlink.net
Internet: http://www.nhfonline.org
Hydrocephalus Association
870 Market Street
Suite 705
San Francisco, CA 94102
USA
Tel: 4157327040
Fax: 4157327044
Tel: 8885983789
Email: info@hydroassoc.org
Internet: http://www.hydroassoc.org
Congenital Heart Anomalies, Support, Education, & Resources
2112 North Wilkins Road
Swanton, OH 43558
Tel: (419)825-5575
Fax: (419)825-2880
Email: chaser@compuserve.com
Internet: http://www.csun.edu/~hcmth011/chaser/chaser-news.html
TEF/VATER/VACTRL National Support Network
15301 Grey Fox Road
Upper Marlboro, MD 20772
Tel: (301)952-6837
Fax: (301)952-9152
Email: tefvater@ix.netcom.com
Internet: http://www.tefvater.org
EA/TEF Child and Family Support Connection, Inc.
111 West Jackson Boulevard
Suite 1145
Chicago, IL 60604-3502
USA
Tel: 3129879085
Fax: 3129879086
Email: info@eatef.org
Internet: http://www.eatef.org
Tracheo Oesophageal Fistula Support Group (TOFS)
St. George's Centre
91 Victory Road
Netherfield
Nottingham, Intl NG4 2NN
United Kingdom
Tel: 0115 961 3092
Fax: 0115 961 3097
Email: office@tofs.org.uk
Internet: http://www.tofs.org.uk
VATER Connection, Inc.
1722 Yucca Lane
Emporia, KS 66801
Tel: (620)342-6954
Fax: (620)342-6954
Email: angie@vaterconnection.org
Internet: http://www.vaterconnection.org
Birth Defect Research for Children, Inc.
930 Woodcock Rd
Suite 225
Orlando, FL 32803
USA
Tel: 4078950802
Fax: 4078950824
Email: staff@birthdefects.org
Internet: http://www.birthdefects.org
For a Complete Report
This is an abstract of a report from the National Organization for Rare Disorders, Inc. ® (NORD). A copy of the complete report can be obtained for a small fee by visiting the NORD website. The complete report contains additional information including symptoms, causes, affected population, related disorders, standard and investigational treatments (if available), and references from medical literature. For a full-text version of this topic, see http://www.rarediseases.org/search/rdblist.html
The information provided in this report is not intended for diagnostic purposes. It is provided for informational purposes only. NORD recommends that affected individuals seek the advice or counsel of their own personal physicians.
It is possible that the title of this topic is not the name you selected. Please check the Synonyms listing to find the alternate name(s) and Disorder Subdivision(s) covered by this report.
This disease entry is based upon medical information available through the date at the end of the topic. Since NORD's resources are limited, it is not possible to keep every entry in the Rare Disease Database completely current and accurate. Please check with the agencies listed in the Resources section for the most current information about this disorder.
For additional information and assistance about rare disorders, please contact the National Organization for Rare Disorders at P.O. Box 1968, Danbury, CT 06813-1968; phone (203) 744-0100; web site www.rarediseases.org or email orphan@rarediseases.org
Last Updated: 4/22/2003
Copyright 2003 National Organization for Rare Disorders, Inc.
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