Fetal Hydantoin Syndrome

National Organization for Rare Disorders, Inc.

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It is possible that the main title of the report Fetal Hydantoin Syndrome is not the name you expected.

Disorder Subdivisions

  • None

General Discussion

Fetal hydantoin syndrome is a characteristic pattern of mental and physical birth defects that results from maternal use of the anti-seizure (anticonvulsant) drug phenytoin (Dilantin) during pregnancy. The range and severity of associated abnormalities will vary greatly from one infant to another. However, characteristic features may include distinctive skull and facial features, growth deficiencies, underdeveloped (hypoplastic) nails of the fingers and toes, and/or mild developmental delays. Other findings occasionally associated with this syndrome include cleft lip and palate, a head circumference that is smaller than would be expected based upon an infant's age and gender (microcephaly), and skeletal malformations particularly of the fingers or hands. The exact risk of a fetus developing fetal hydantoin syndrome is not fully understood, but only approximately 5-10% of fetuses exposed to phenytoin develop the disorder.

Anti-seizure medications, also known as antiepileptic or anticonvulsant medications are among the most common teratogens prescribed to women of childbearing age. A teratogen is a drug that interferes with the development of a fetus. Affected infants often develop similar symptoms regardless of the associated drug, particularly symptoms affecting the head and face region (craniofacial abnormalities). Studies have indicated that fetal valproate syndrome is associated with greater risk of neurological and cognitive abnormalities than other anti-seizure medications. NORD has a separate report on fetal valproate syndrome.
Although some disorders due to specific drugs (e.g. fetal hydantoin syndrome) are rare, many researchers believe that when considering the teratogenic effects of all antiepileptic drugs collectively these disorders are not rare. The concept of fetal antiepileptic syndromes in this regard is less useful than in the past and the broad consideration of the major and minor congenital malformations, various cognitive impairments, and behavioral abnormalities taken as a broader, collective concept is more appropriate.

Supporting Organizations

American Cleft Palate-Craniofacial Association

1504 East Franklin Street
Suite 102
Chapel Hill, NC 27514-2820
Tel: (919)933-9044
Fax: (919)933-9604
Tel: (800)242-5338
Email: info@cleftline.org
Website: http://www.cleftline.org

Cleft Lip and Palate Foundation of Smiles

2044 Michael Ave SW
Wyoming, MI 49509
Tel: (616)329-1335
Email: Rachelmancuso09@comcast.net
Website: http://www.cleftsmile.org

Genetic and Rare Diseases (GARD) Information Center

PO Box 8126
Gaithersburg, MD 20898-8126
Tel: (301)251-4925
Fax: (301)251-4911
Tel: (888)205-2311
Website: http://rarediseases.info.nih.gov/GARD/

March of Dimes

1275 Mamaroneck Avenue
White Plains, NY 10605
Tel: (914)997-4488
Fax: (914)997-4763
Email: AskUs@marchofdimes.org or preguntas@nacersano.org
Website: http://www.marchofdimes.org and nacersano.org

Organisation For Anti-Convulsant Syndrome

23 Morriston Close
South Oxhey
Watford, WD196UB
United Kingdom
Tel: 4402083869271
Email: OACSsecretary@gmail.com
Website: http://www.oacscharity.org

The Arc

1825 K Street NW, Suite 1200
Washington, DC 20006
Tel: (202)534-3700
Fax: (202)534-3731
Tel: (800)433-5255
Email: info@thearc.org
Website: http://www.thearc.org

For a Complete Report

This is an abstract of a report from the National Organization for Rare Disorders (NORD). For a full-text version of this report, go to www.rarediseases.org and click on Rare Disease Database under "Rare Disease Information".

The information provided in this report is not intended for diagnostic purposes. It is provided for informational purposes only.

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.

Last Updated:  7/6/2015
Copyright  2015 National Organization for Rare Disorders, Inc.