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.
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 64 craniofacial teams located in 27 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
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
Support organization for parents of children with craniosynostosis. Provides an online support group, newsletters, resources, and hospital care packages.
This plagiocephaly website www.plagiocephaly.org has a number of links to plagiocephaly and other craniosynostosis websites.
The Craniofacial Center
Dr. Jeffery A. Fearon, MD, FACS, FAAP, Director
7777 Forest Lane, Suite C-700
Dallas, TX 75230
Visit Dr. Jeffrey Fearon's informative website that is very lay friendly and easy to understand.
Avery's Angel Network Website:www.cranioangelnetwork.com
/Cranio_Angel_Network/Welcome.html Little Avery was born with Craniosyostosis, and her mom started this network. She uses her talents to make beautiful headbands for the girls and do-rags for the boys who have had surgery to correct their craniosynostosis. This is her mission, and judging from the smiles on the faces of the little ones wearing the headbands and do-rags, the kids love them also.
National Health Law Program
1444 I Street NW, Suite 1105
Washington, DC 20005
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.
National Parent to Parent Organization
c/o Julie Gordon
150 Custer Court
Green Bay, WI 54301-1243
Toll free (877)336-5333
This organization helps you get in touch with parents in your area whose children also have Craniosynostosis.
The following are some other useful sites concerned with craniosynostosis:
This site includes descriptions of the various types of craniosynostosis, as well as diagrams of each, by Columbia University's Department of Neurological Surgery.
The following web sites have information about positional craniosynostosis, including information on cranial molding helmets: