A very good friend of mine has a 10 yr old son with the above
condition.  He has had surgery previously and part of his skull is
missing and now a lump has formed.  She is meeting with a team of
Neurosurgeons on Friday to discuss whether or not to operate to remove
the lump or leave it as is.  She has been informed there is a 65%
chance he may die on the operating table or some percentage he may
become a vegetable.  As you can imagine she is terribly frightened of
losing her child either way.  Are there any support groups she can
visit?  Is there anyone she can contact to discuss his condition
either by e-mail or post?  Are their any reading materials or
information she can access?
He also has extreme learning difficulties from his condition due to
short term memory loss.  He can hardly read or write.
Your assistance would be greatly appreciated.

Dear Nikki18,

The condition you are describing appears to be Craniosynostosis. There
is a lot of information available on this condition, and I have tried
to locate the best for you.

Below, in Part I, you will find resources providing an overview of
this condition and its treatment, as much as possible, in plain
English. Part II includes links and contact information for various
online and offline support groups and resources, as well as links to
individual accounts from people who describe their own family's
experiences with craniosynostosis. Part III includes information about
books on the subject.


I. Overview of Craniosynostosis

The human skull is composed of several "plates" of bone, that come
together at "sutures". Eventually the sutures fuse together to make
the skull quite solid. An explanation of the various bones of the head
can be found on Minnesota State University's eMuseum website:
http://emuseum.mnsu.edu/biology/humananatomy/skeletal/skull.html

There is an illustration of the sutures and plates for an infant skull
on the National Institute of Health website, at:
http://www.nlm.nih.gov/medlineplus/ency/imagepage/1127.htm

If the sutures in a baby's skull connect too soon, there isn't enough
room for the brain to grow. The name of this condition is derived from
the following terms: Cranio = Skull,  Syn  = Joining , Ostosis = Bone

If craniosynostosis occurs, the baby will also have an abnormal head
shape, and if not surgically corrected can cause developmental
disorders as a result of injury to the growing brain. A second surgery
is required in approximately 10% of cases.

A very good overview of this condition, including present treatment
options, is provided on the University of Missouri Health Care
website:
http://www.muhealth.org/~neuromedicine/craniosynostosis.shtml

Another overview of the condition and surgery can be found on a Dallas
clinic's website (Plastic & Craniofacial Surgery for Children):
http://www.kidsplastsurg.com/craniosynostosis.html

For in-depth information, see the information offered by the Tennessee
Craniofacial Center, Erlanger Health System, which starts at:
http://www.erlanger.org/craniofacial/book/craniosynostosis/cranio_1.htm

A list of treatment centers for craniofacial disorders can be found
at:
http://www.worldcf.org/supportgroups.htm


Additional explanation:

Another overview of craniosynostosis can be found on the Headlines
Craniofacial Support website:
http://headlines.org.uk/

Another good overview is offered by Plagiocephaly.org:
http://www.plagiocephaly.org/cranio.htm

A shorter summary is provided at the National Institute of Health,
National Institute of Neurological Disorders and Stroke website:
http://www.ninds.nih.gov/health_and_medical/disorders/craniosytosis_doc.htm

Links to a large number of additional resources can be found on
HealthHubs at:
http://www.healthubs.com/craniosynostosis/


II. Support Organizations:

A. Support Groups for Craniosynostosis

Craniosupport
(An online group, offering a private email discussion group and
scheduled weekly online chats, and also offering an email-based "ask a
surgeon" feature)
http://www.craniosupport.com/

Craniosynostosis And Positional Plagiocephaly Support, Inc. (CAPPS)
(Offers a lot of information and resources)
6905 Xandu Court
Fredericksburg, VA 22407
Phone (Cranio): 540-786-9563
Phone (Plagio): 845-454-5902
Email: Plagio@optonline.net
http://www.cappskids.org/

Headlines Craniofacial Support
(Good online overview, with a newsletter offered by mail. Based in the
United Kingdom.)
Steve Moody, Chairman
44 Helmsdale Road
Leamington Spa
CV32 7DW
Phone: +44 (0)1926 334629
Email: SteveMoody@headlines.org.uk 
http://www.headlines.org.uk/


B. Online Groups and Mailing Lists

Yahoo! Groups - Craniosynostosis and Parents Support (Associated with
CAPPS) (590 members)
http://groups.yahoo.com/group/cranioandparentssupport/

Yahoo! Groups - Children with Craniosynostosis (91 members)
http://groups.yahoo.com/group/childrenwithcraniosynostosis/

Craniosupport.com - Offers a members-only group. (88 members)
Yahoo! Groups – CranioSupport
http://groups.yahoo.com/group/CranioChat/


C. Organizations Focused on Craniofacial Disorders

AboutFace U.S.A. 
PO Box 969
Batavia IL 60510
Phone: 312-337-0742
Toll Free: 888-486-1209
e-mail: AboutFace2000@aol.com
Home page: http://www.aboutfaceusa.org 

Birth Defect Research for Children, Inc. 
930 Woodcock Rd
Orlando FL 32803
Phone: 407-895-0802
e-mail: abcd@birthdefects.org
http://www.birthdefects.org 

Children's Craniofacial Association 
P.O. Box 280297
Dallas TX 75228
Phone: 972-994-9902
Toll Free : 800-535-3643
e-mail: contactcca@ccakids.com
http://www.ccakids.com 

Craniofacial Support Group 
44 Helmsdale Road
Leamington Spa None CV32 7DW
Phone: 44 -192-6 334629
e-mail: SJMoody@compuserve.com
http://www.hopwood.ac.uk/~cranio 

FACES: The National Craniofacial Association 
P.O. Box 11082
Chattanooga TN 37401
Phone: 423-266-1632
Toll Free: 800-332-2373
e-mail: faces@faces-cranio.org 
http://www.faces-cranio.org/

Forward Face, Inc. 
317 East 34th Street
New York NY 10016
Phone: 212-684-5860
Toll Free: 800-393-3223 

National Craniofacial Foundation 
3100 Carlisle Street
Dallas TX 75204
Phone: 800-535-3643 


D. National Organizations – General Focus

There are some national organizations, more general in scope, which
may be able to provide information or assistance:

AboutFace USA (You may wish to order a copy of the AboutFace booklet
entitled, "Apert, Crouzon and other Craniosynostosis Syndromes." -
$3.50 each)
P. O. Box 458
Crystal Lake, IL 60014
Toll Free: (888) 486-1209
Email: aboutface2000@aol.com
http://www.aboutfaceusa.org/

March of Dimes Birth Defects Foundation
1275 Mamaroneck Avenue
White Plains, NY 10605
resourcecenter@modimes.org
Phone: 914-428-7100 888-MODIMES (663-4637)
Fax: 914-428-8203
http://www.modimes.org


National Organization for Rare Disorders (NORD)
P.O. Box 1968
(55 Kenosia Avenue)
Danbury, CT 06813-1968
Email: orphan@rarediseases.org
Phone: 203-744-0100
Voice Mail: 800-999-NORD (6673)
Fax: 203-798-2291
http://www.rarediseases.org


E. Individual Stories

A number of parents have put their own stories online, to provide
support, information, and inspiration to others:

Asher's Craniosynostosis home page
http://www.geocities.com/HotSprings/Villa/3462/

Brett's Craniosynostosis Surgery
http://www.geocities.com/~kasmom/brett2.html

Brynne and Craniosynostosis
http://members.aol.com/cdbosworth/brynnespage.html

Craniosynostosis & Andrew's First Surgery
http://members.aol.com/ApertSyn/surgery1.html

The Tara Approach - Craniosynostosis
http://www.tara-approach.org/articles/cranio/cranio1.asp


III. Books

The following books are aimed at health care professionals:

Craniosynostosis, by Guido Galli (ed.), CRC Press (February, 1984).
http://www.amazon.com/exec/obidos/tg/detail/-/0849352061/

Craniosynostosis: Diagnosis, Evaluation, and Management, by M. Michael
Cohen (ed.) and Ruth E. MacLean (ed.), Oxford University Press (April,
2000).
http://www.amazon.com/exec/obidos/tg/detail/-/019511843X


Not yet available:
The Clinical Management of Craniosynostosis, by Richard Haywood, et
al, Mac Keith Pr (January, 2004).
http://www.amazon.com/exec/obidos/tg/detail/-/1898683360


Research Strategy:

Craniofacial disorders have been one of my areas of passive study,
ever since I first saw a Nova presentation on Crouzon's Syndrome, way
back when I was still in high school. If you start searching for this
information on the Internet, you will find that the following searches
provide only a starting point to the vast amount of information
available on craniofacial disorders and their treatment, including
craniosynostosis. In many ways, the Internet has been a boon to
families facing this type of issue, as it provides a means for parents
whose children have rare disorders to contact each other, share
information, and provide each other with support.

Google search for "craniosynostosis"
://www.google.com/search?q=craniosynostosis


Google search for "craniosynostosis support group"
://www.google.com/search?q=craniosynostosis+support+group

Google search for "craniosynostosis second surgery"
://www.google.com/search?q=craniosynostosis+second+surgery

Google Directory search for "craniosynostosis":
://www.google.com/search?q=craniosynostosis

I hope this provides you with the information you need. Please feel
free to ask if you require additional clarification. I wish your
friend and her son the best at what must be a horribly stressful time
for them. You are obviously a good friend.

- expertlaw

Craniosynostosis is not a "lump" that can be removed.