New advances and procedures concerning Craniosynostosis are constantly being developed. Be an advocate for your child!

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 4 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.

 

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 many of these teams. This is by no means a comprehensive list of all the craniofacial teams.
Please Contact Us 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. (Facebook has dozens of private groups specific to conditions. Try searching Facebook with a few different key words such as "craniofacial" or "burn" and find groups of parents and others with similar differences.) The information below will help you get started.

FACES: The National Craniofacial Association

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 (Apply Here). Resources include newsletters, information about craniofacial conditions, and networking opportunities. Contact Us for more information.

Office of Rare Diseases

The Genetic and Rare Diseases Information Center

Excellent web site for finding information on a variety of craniofacial disorders, particularly very rare ones. Information specialists are available to answer your questions. Telephone operation is Monday - Friday, 12 pm to 6 pm Eastern Time. Email or fax requests for information will be answered within 5-10 working days. U.S. Mail requests will be answered within 5-10 working days. NOTE: The center does not give medical advice, provide treatment, or diagnose illness.
Phone: (888) 205-2311
Website: rarediseases.info.nih.gov/diseases/6209/craniosynostosis

CAPPS (Craniosynostosis and Positional Plagiocephaly Support, Inc.)

Support organization for parents of children with craniosynostosis. Provides an online support group, newsletters, resources, and hospital care packages.

Phone: (888)-572-5526

Website: www.cappskids.org
 

Cranio Care Bears
Cranio Care Bears' mission is to spread awareness, support & compassion through loving care packages to families of children facing surgery for craniosynostosis.
Website: craniocarebears.org

National Health Law Program

Provides extensive information on health care law affecting families with children who have special health care needs.

Phone: (202) 289-7661
Website: www.healthlaw.org

NASCAR Xfinity Series Racer Ryan Vargas Raises Awareness
for Craniosynostosis and other craniofacial syndromes
Read more...

Worldwide Craniosynostosis Map

A map showing where people with Craniosynostosis live. If you would like to add yourself, please do!

Additional Resources

Suggested Reading

Children with Facial Difference:

A Parent's Guide


Written by Hope Charkins, MSW. Excellent resource for parents to help them cope with medical, emotional, social, educational, legal, and financial challenges presented by facial differences of their children. Order from Amazon.com if you cannot find it in your local bookstore.

FACES: The National Craniofacial Association

FACES: The National Craniofacial Association

P.O. Box 11082 | Chattanooga, TN 37401 | USA

(800) 332-2373

FACES is a member organization of America's Best Charities
FACES is a member organization of GuideStar Exchange
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Faces: The National Craniofacial Association is a 501©(3) nonprofit organization incorporated under the laws of the State of Tennessee.

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