FAQ
Q. How can I help?
A. World Craniofacial Foundation needs volunteers and financial support to help assist children with severely deformed faces and heads, please contact us at 972.566.6669 for more information or visit our Ways to Help page.
Q. How prevalent are craniofacial abnormalities?
A. One out of every 500 newborns today has a craniofacial and clefting deformity. In the U.S. alone, over 12,000 newborns each year will need the specialized care of a craniofacial team. And in addition to those children born with craniofacial abnormalities, many children and adults suffer craniofacial abnormalities due to injury.
Q. Don’t these abnormalities occur mostly in third-world countries?
A. No, children in every state of the U.S. – of all ethnicities and races – in every country of the world.
Q. Aren’t these procedures covered by insurance?
A. Unfortunately, many families do not have insurance coverage, or the condition is considered “aesthetic” and not life-threatening so coverage is not available. We do not want even one child to go through life with a face that was not transformed because funds were not available.
Q. Isn’t craniofacial surgery simply cosmetic surgery?
A. No, abnormalities of the head and face can obstruct the trachea; can put pressure on the optic nerve, causing blindness; can cause a severely misshapen skull resulting in serious pressure on the brain; just to name a few of the problems associated with this condition.
Q. Can these abnormalities be life threatening?
A. Yes, in fact, many children born with these abnormalities do not live to reach adulthood.
Q. Does one surgery correct the problem?
A. No. A child may need 5-20 corrective surgeries as he or she grows, creating a long-term responsibility to each child.
Q. What is the role of the Foundation in helping these patients and families?
A. The World Craniofacial Foundation:
Provides access to surgical care
Provides financial assistance with the secondary costs associated with medical treatment, such as food, transportation, lodging and ancillary
Provides educational information for families
Teaches doctors around the globe.
Publishes quarterly educational newsletters
Helps with costs associated with training Fellows in craniofacial surgery
Q. Don’t hospitals and surgeons donate their services for these type procedures?
A. While many facilities and physicians have been extremely generous, not all services can be donated.Current projections show that between three and four million dollars in services or funding will be needed this year to cover all foundation services.
Q. What other type of services are donated?
A. Generous donors have given hotel and transportation services, but again, the need is greater than the donated resources available.
Q. What conditions may be treated?
A. Nearly all birth-related and acquired abnormalities of the head and face, including trauma, degenerative diseases and tumors. This is a partial list of the conditions for which the World Craniofacial Foundation provides support:
Cleft lip and palate
Aperts syndrome
Crouzons syndrome
Craniosynostosis
Hyperteleorism
Treacher-Collins syndrome
Hemifacial microsomia
Jaw abnormalities
Trauma
Hemifacial atrophy
TMJ disorders
Malocclusion
Neurofibromatosis
Fibrous Dysplasia
Brain-related tumors
Cranial base tumors
Malignant tumors
Q. What type treatment team is required?
A. Correcting these abnormalities takes the specialized care of a multidisciplinary craniofacial team. Depending on the severity of the deformity, the team members can include:
Anthropologist
Craniofacial surgeon
Geneticist
Medical artist
Neuroradiologist
Orthodontist
Otolaryngologist
Pediatric anesthesiologist
Pediatric neurosurgeon
Pediatric nurse
Pediatrician
Pedontist
Photographer
Social worker
Speech pathologist
Q. Does the World Craniofacial Foundation ever turn away children who have head and facial abnormalities?
A. Unfortunately, Yes. Demand for assistance is always greater than our ability to provide it.
Q. Does the World Craniofacial Foundation have a long-term vision?
A. Yes. Our ten-year plan is to encourage and support craniofacial centers of excellence around the world in order to transform the lives of affected children.
