Apert Syndrome Health Article

Prognosis

Many factors affect the prognosis of a child with AS. The age at which the first surgery takes place to create spaces between the skull bones is important. Mental retardation can result from the buildup of pressure on the brain. Having a supportive, loving family environment increases the chances for normal development. Children with complex medical problems who lack a supportive setting often have delayed mental, social, and emotional development.

Although the hands will never be completely normal, surgeries to separate and straighten the fingers can be done. Tasks such as writing and manipulating buttons will be difficult. Adaptive devices in school and home will allow for more independence. Separation of the toes usually does not improve walking but may improve the child's self image.

Persons with AS who have a normal intelligence level can have full, productive lives. Vocational training will help those with borderline intelligence.

BOOKS

Dufresne, Craig, Benjamin Carson, and James Zinreich. Complex Craniofacial Problems: A Guide to Analysis and Treatment. New York, NY: Churchill Livingston, 1992.

Keene Nancy, Rachel Prentice, and Linda Lamb. Your Child in the Hospital: A Practical Guide for Parents. Cambridge, MA: O'Reilly and Associates, 1996.

Wilson, Golder N., and Carl W. Cooley. Preventive Management of Children With Congenital Anomalies and Syndromes New York, NY: Cambridge University Press, 2000.

PERIODICALS

Chang, C. C., et al. "Prenatal diagnosis of Apert syndrome." Prenatal Diagnosis 18 (1998): 621-625.

Ferreira, J. C., et al. "Second-trimester molecular prenatal diagnosis of sporadic Apert syndrome following suspicious ultrasound findings." Ultrasound in Obstetrics and Gynecology 14, no. 6 (December 1999): 426-30.

von Gernet, S., et al. "Genotype-phenotype analysis in Apert syndrome suggests opposite effects of the two recurrent mutations on syndactyly and outcome of craniofacial surgery." Clinical Genetics 57 (2000): 137-139.

Wilkie, A. O. M., et al. "Apert syndrome results from localized mutations of FGFR2 and is allelic with Crouzon syndrome." Nature Genetics 9 (1995): 165-172.

ORGANIZATIONS

Apert Syndrome Support Group. 8708 Kathy, St. Louis, MO 63126. (314) 965-3356.

Children's Craniofacial Association. PO Box 280297, Dallas, TX 75243-4522. (972) 994-9902 or (800) 535-3643. contactcca@ccakids.com. <http://www.ccakids.com>.

National Organization for Rare Disorders (NORD). PO Box 8923, New Fairfield, CT 06812-8923. (203) 746-6518 or (800) 999-6673. Fax: (203) 746-6481. <http://www.rarediseases.org>.

WEBSITES

FriendshipCenter.com. <http://www.friendshipcenter.com>.

Suzanne M. Carter, MS, CGC