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About us

The Center for Craniosynostosis and Syndromic Craniofacial Disorders at Cohen Children’s was developed to specifically address craniosynostosis and craniofacial disorders that have associated syndromes. Our multidisciplinary team of specialists works together to reshape patients’ skulls, reconstruct faces and skulls and repair eye sockets to make room for growing brains while correcting appearance.

Our center focuses on the whole patient, providing comprehensive services with social workers, physicians, psychologists and nurses to address not only the physical but also emotional and mental needs of the patient and their families. Our surgeons are nationally ranked experts in craniofacial surgical techniques. They work alongside radiology and imaging specialists, neurologists, dentists and dermatologists.

Treatments

The pediatric plastic surgeons at the Center for Craniosynostosis and Syndromic Craniofacial Disorders have the unique expertise to treat craniosynostosis and syndromic craniofacial disorders. Because these conditions are so rare, it can be difficult to find physicians with the expertise needed to handle complex conditions. We incorporate the latest in three-dimensional analysis and CAD/CAM engineering to create models for surgical planning. Our team works collaboratively to design a treatment plan unique to each patient.

Frequently asked questions

What is craniosynostosis?

Craniosynostosis is a rare condition in which the fibrous sutures in an infant’s skull fuse together causing problems with brain and skull growth. Babies are born with spaces between the bones in their skull to allow for skull growth. The spaces eventually grow together. Babies whose sutures fuse too early usually have an abnormally shaped skull and facial features. Other organ systems, like the brain and heart, can be affected.

What causes craniosynostosis?

The cause of craniosynostosis is unknown in the majority of cases. However, in some cases craniosynostosis has been linked to some genetic syndromes like Apert syndrome and Pfeiffer syndrome.

What are syndromic synostoses?

There are more than 150 syndromes associated with craniosynostosis. These syndromes can sometimes be linked to a family history, though in many cases the syndrome is caused by a genetic mutation with no link to family history. Genetic testing is available.

Common synostosis syndromes include:

Apert syndrome – a genetic disorder that causes abnormal development of the skull. Babies with Apert syndrome have abnormal development of the upper jaw and abnormal shape and placement of the eyes. These children may also have a cleft palate and webbed toes and fingers, as well as other birth defects.

Crouzon syndrome – like Apert syndrome, children with Crouzon have abnormally developed skulls, which leads to bulging, wide-set eyes that do not point in the same direction; a beaked nose; and an underdeveloped upper jaw. Children with Crouzon syndrome may also develop a cleft palate, dental problems and hearing loss.

Pfeiffer syndrome – a genetic disorder causing an abnormal shape of the forehead and nose, as well as the position of the eyes and underdevelopment of the upper jaw. Children with this syndrome often have short, webbed fingers and toes; hearing loss; and crowded teeth.

Saethre-Chotzen syndrome – a genetic condition causing one side of the face to appear noticeably different from the other. Most children with Saethre-Chotzen syndrome have small, unusually shaped ears; webbed fingers and toes; and delayed development and learning difficulties.

What is Binder’s syndrome?

Binder’s syndrome or maxillonasal dysplasia is a rare congenital condition where patients have a receded mid-face and an extremely flat nose. The cause of this condition is not clear, though research has found vitamin D deficiency during embryonic growth may be a possible cause.

What is Beckwith-Weidemann syndrome?

Beckwith-Weidemann syndrome is an overgrowth syndrome in which infants are considerably larger than normal and continue to grow and gain weight at an unusual rate. Physical growth typically slows at age 8. Overgrowth of the tongue is also very common and can cause speech disorders, obstruct the upper airways, and psychological problems due to appearance.

What is hypertelorism?

Hypertelorism refers to an abnormally large distance between the eyes. It is not a diagnosis but rather a feature of many underlying causes, possibly due to a mass pushing the eye sockets apart, a cleft in the bone, or as part of a syndrome.

What is deformational plagiocephaly?

Deformational plagiocephaly refers to an asymmetrical shape of the head from repeated pressure to the same area of the head. The skull sutures do not fuse together in deformational plagiocephaly as it does in craniosynostosis. Patients with deformational plagiocephaly are less likely to have surgery, but instead undergo positioning or helmeting for treatment.

How are these conditions diagnosed?

Patients with craniosynostosis and craniofacial disorders typically undergo a physical examination, a CT scan and an X-ray.

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