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 than 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 that prevents the entire forehead from growing in a forward direction, causing a tall, flattened forehead
- Why
- Reoccurrence
- Challenges
- Surgery
- Resources
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... zero to four percent. 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 the condition 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.
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
CAPPS (Craniosynostosis and Positional Plagiocephaly Support, Inc.)
Jennifer Pitchke, Executive Director
6905 Xandu Court
Fredericksburg, VA 22407
Email:CAPPSORG@aol.com
Support organization for parents of children with craniosynostosis. Provides an online support group, newsletters, resources, and hospital care packages.
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
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. Published by Woodbine House, 1996.
1-800-843-7323.
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
This organization helps you get in touch with parents in your area whose children also have Craniosynostosis.
AboutFace USA
P. O. Box 969
Batavia, IL 60510
Toll free (888) 486-1209
Email: aboutfaceus@aol.com
Ask for a copy of the AboutFace booklet entitled, "Apert, Crouzon and other Craniosynostosis Syndromes."
The following web sites have information about positional craniosynostosis, including information on cranial molding helmets: