|
The National Craniofacial Association |
| P. O. Box 11082 | * Chattanooga, TN 37401 |
| 800- | 332-2373 |
Craniosynostosis
What is Craniosynostosis?
Craniosynostosis is caused by the premature closing of one or more of the sutures of the
bones which make up the skull. Usually, CT scans are taken to determine if the abnormal
skull shape is craniosynostosis, rather that just a result of fetal head position or birth
trauma. There are four types of craniosynostosis:
Scaphocephaly is caused by the fusion of the sagittal suture which runs from front to
back down the middle of the top of the skull. This is the most common type of
craniosynostosis. Characteristics include:
- a long narrow shaped head from front to back
- narrow from ear to ear
- the head appears boat-shaped
Trigonocephaly is the fusion of the metopic suture, which runs from the top of the head, down the middle of the forehead, towards the nose. Characteristics include:
- triangular shaped forehead
- eyes are closer together than usual
Plagiocephaly is the premature fusion of one of the coronal sutures, which extend from ear to ear over the top of the head. Characteristics include:
- fusion of either the right or left side
- the forehead and brow look like they are pushed backwards
- the eye on the affected side has a different shape than the one on the unaffected side
Brachycephaly results when both sides of the coronal sutures fuse prematurely. Characteristics include:
- wide-shaped head, with short skull
- fusion prevents the entire forehead from growing in a forward direction, causing a tall, flattened forehead
Why did this happen?
At this time, doctors are unsure why craniosynostosis happens. In some families, it does
appear to be an inherited trait. It is most likely that some mutation occurred in the
early development to one of the baby's genes; however, research cannot yet give us
definitive answers on this. There is no indication that there is anything the mother did
or did not do to cause this. ** If you are interested
in participating in a current research study on the causes of craniosynostosis, please see
the invitation below.
Will this happen to children I have in the future?
The chances that other children will have this problem are very slim...0-4%. These are
also the chances of your child's children being born with craniosynostosis. The only
exception is when the craniosynostosis is a part of Crouzon or Apert Syndromes, in which
there is a 50% chance of being passed on from parent to child.
What kinds of problems could my child have?
Depending on the severity of the craniosynostosis, your child may have some or all of
these problems:
- abnormal skull shape
- abnormal forehead
- asymmetrical eyes and or ears
- intracranial pressure (pressure inside the skull) which can cause delays in development or permanent brain damage if not corrected
Will my child need surgery?
Babies born with craniosynostosis usually will need surgery, unless it is a very mild
case. It is important that the proper X-rays and CT scans are made in order for your
physician to make a correct diagnosis, as well as show you the fused sutures and how they
will be reconstructed. Usually, only one surgery is required to separate the sutures,
reshape the bones, and place them in the proper position. Only 10% of children will need a
second surgery. Surgery to correct craniosynostosis is usually performed between four and
eight months of age.
New advances in procedures to correct craniosynostosis are being developed all
the time. Be an advocate for your child!!
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 thirty-two craniofacial teams located in 20 states, the District of
Columbia, and Canada. This is by no means a comprehensive list of all the craniofacial
teams. Please contact FACES 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. The listing
below will get you started.
FACES: The National Craniofacial Association
P. O. Box 11082
Chattanooga, TN 37401
(800) 332-2373
email: faces@faces-cranio.org
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. Resources include newsletters, information about craniofacial conditions, and
networking opportunities.
CAPPS (Craniosynostosis and Positional Plagiocephaly Support, Inc.)
Jennifer Pitchke, Executive Director
6905 Xandu Court
Fredericksburg, VA 22407
http://www.CAPPSkids.org
Email:CAPPSORG@aol.com
Support organization for parents of children with craniosynostosis. Provides an online
support group, newsletters, resources, and hospital care packages.
This plagiocephaly website has a number of links to plagiocephaly and other craniosynostosis websites.
Children's Craniofacial Association
P.O. Box 280297
Dallas, TX 75228
800-535-3643
Email: contactCCA@ccakids.com
Ask for the Guide to Understanding Craniosynostosis written by Dr. Fearon.
The Craniofacial Center
Dr. Jeffery A. Fearon, MD, FACS, FAAP, Director
7777 Forest Lane, Suite C-700
Dallas, TX 75230
(972) 566-6464
Email: cranio700@aol.com
Visit Dr. Jeffrey Fearon's informative website that is very lay friendly and easy to
understand.
National Health Law Program
1101 14th Street, NW, Suite 405
Washington, DC 20005
(202) 289-7661
Website: http://www.healthlaw.org
Provides extensive information on health care law affecting families with children
who have special health care needs.
Children with Facial Difference: A Parent's Guide.
Written by Hope Charkins, MSW. Order from Amazon.com
if you cannot find it in your local bookstore.
Excellent resource for parents to help them cope with medical, emotional,
social, educational, legal, and financial challenges presented by facial differences of
their children.
MUMS
National Parent to Parent Organization
c/o Julie Gordon
150 Custer Court
Green Bay, WI 54301-1243
Toll free (877)336-5333
http://www.netnet.net/mums/
This organization helps you get in touch with parents
in your area whose children also have Craniosynostosis.
AboutFace USA
P. O. Box 75112
Las Vegas, NV 89136
Toll free (888) 486-1209
Email: info@aboutfaceusa.org
Ask for a copy of the AboutFace booklet entitled, "Apert, Crouzon and other
Craniosynostosis Syndromes."
The following are some other useful sites concerned with craniosynostosis:
http://cumc.columbia.edu/dept/nsg/PNS/Craniofacial.html
This site includes descriptions of the various types of craniosynostosis, as well as
diagrams of each.
http://www.health.adelaide.edu.au/paed-neuro/craniofacial.html
This site gives excellent information and diagrams on craniosynostosis, as well as on
Crouzon Syndrome, Apert Syndrome,and Pfeiffer Syndrome.
The following web sites have information about positional craniosynostosis, including information on cranial molding helmets:
www.kidsplastsurg.com/cranmold.html
INVITATION FOR PARTICIPATION IN A RESEARCH STUDY
We are researchers studying the causes of craniosynostosis and our ultimate goal is to
identify genes and environmental factors causing this condition. This project includes
collaborators from
We are continuing to recruiting families with at least one child with craniosynostosis. If they agree to participate each family member will need to sign a consent form. We will arrange for a clinical examination and blood sample collection from the child and his or her biological parents. These samples will be prepared so that we will not need another sample in the future. The families will not benefit directly, but we hope by learning about the cause for craniosynostosis that some day we will be able to provide better care to craniosynostosis patients. The results of our study will be published, but the participants will be coded by identification number and will remain anonymous.
These families will also be asked to participate in a survey, designed to identify environmental factors that may be causing craniosynostosis. All responses to the questionnaire will be kept confidential. There will be no charges to participants in the study.
You can register for the study and complete the consent forms and the epidemiologic
questionnaire online trough our research web site:
https://gcrc-s1.win.ad.jhu.edu/cranio/index.cfm
Please contact Dr. Simeon Boyd, M.D. (simeon.boyd@ucdmc.ucdavis.edu) or our research coordinator Ms. Erica Goude, B.A. (erica.goude@ucdmc.ucdavis.edu) by email to inquire about our study, or to make arrangements for participation.
Sincerely,
Simeon Boyd, MD
Chief, Section of Genetics
Children's Miracle Network Endowed Chair
M.I.N.D. Institute, UC Davis
2825 50th Street
Sacramento, CA 95817
Ph.(916) 703-0446
Fax (916) 703-0417
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Last modified on: Monday, January 07, 2008 12:51 PM
