VACTERL with Hydrocephalus

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

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• VACTERL Association with Hydrocephalus
• VATER Association with Hydrocephalus
• VACTERL-H Association

Disorder Subdivisions

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• None

General Discussion

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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

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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

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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.