We are dedicated to providing our patients and their families with the finest in pediatric specialty care. We understand that children, young adults, and their families with complicated diagnosis require a comprehensive multi-disciplinary team approach to adequately evaluate and treat these difficult problems. The Craniofacial team can access, treat and support the ongoing care of pediatric, adolescent, and young adult patients, enabling them to live normal and healthy lives.
Clinical Nurse Specialists/Team Coordinators
Tiffany Shipp, RN, RNFA
Patti McCauley, RN
The Clinical Nurse Specialist is a registered nurse who combines experience in pediatric nursing with specialization in the care of children with craniofacial disorders, cleft lip and palate and orthognathic procedures and diagnosis. While the Clinical Nurse Specialist serves many functions, one of the most vital is that of Team Coordinator and liaison between the family and the craniofacial team. The Clinical Nurse Specialist also coordinates evaluations and treatments, directs patients to the appropriate services and coordinates patient care in the hospital post-operatively. Throughout the course of treatment and recovery, the Clinical Nurse Specialist is available to provide educational guidance and emotional support to the patient and family. We are especially fortunate to have two Clinical Nurse Specialists with a breadth of experience. Rachel Rosen has worked in Ob-Gyn, was the Plastic Surgery Team Leader in the operating room and has ten years experience in feeding children with cleft lip and palate and craniofacial syndromes. Patti McCauley has extensive experience in the Pediatric ICU at Children’s and has worked to coordinate the care of orthognathic treatment and related cases. Together they provide our patients with support in the coordination of their care, act as a resource for education and emotional support.
Dr. Frank Vicari, MD, FACS, FAAP
The craniofacial surgeon is a plastic surgeon with specialized training in the diagnosis and treatment of skeletal abnormalities of the skull and facial bones. This surgeon participates in a broad spectrum of craniofacial problems including craniosynostosis, craniofacial clefts, craniofacial trauma and tumor excision and reconstruction. In patients with syndromic craniosynostosis (such as Treacher Collins, Crouzon, Apert, Saethre-Chotzen or Pfeiffer syndromes, or with simple craniosynostosis) the craniofacial surgeon and the pediatric neurosurgeon perform major facial and cranial osteotomies. Distraction osteogenesis may also be indicated for a variety of conditions. The application of innovative craniofacial techniques to the treatment of post-traumatic facial deformities, tumors of the head and neck, and anomalies of the base of the skull has greatly improved surgical results. One of the most innovative techniques is the minimal incision, endoscopic approach to patients with craniosynostosis. Dr. Vicari was the first in the world to pioneer this exciting and innovative approach. For children with alveolar clefts, he works with the pediatric oral and maxillofacial surgeon, pediatric dentist, and orthodontist in planning and performing bone-grafting procedures.
Pediatric Oral and Maxillofacial Surgeon
Mark F. Erickson, DDS
This team is unique in its integration of pediatric oral surgery and craniofacial surgery into a seamless team that evaluates and treats children and young adults with complex craniofacial and orthognathic problems. We feel that the perspective provided by this combined approach provides our patients with the best possible functional and aesthetic results. Besides these cases Dr. Erickson provides the spectrum of Oral and Maxillofacial Surgical care to our patients. The oral and maxillofacial surgeon specializes in the treatment of intra-oral condition as well as abnormalities of the upper (maxilla) and lower (mandible) jaws in children and young adults with craniofacial syndromes. The intra-oral conditions may be related to the child’s primary diagnosis or may be routine oral and maxillofacial surgery requiring special attention. The oral and maxillofacial surgeon provides treatment of patients with malformed jaws as well as jaws that do not come together appropriately to provide normal mastication/occlusion (biting). Successful treatment of the above requires sequencing with the entire craniofacial team.
Robin Bowman, MD
The pediatric neurosurgeon is an expert in the growth and development of the brain and cranium. He or she is often called upon to help diagnose and treat craniosynostosis, a group of conditions in which there is premature closure of the cranial growth plates. The treatment, usually performed with the craniofacial surgeon, involves release and repositioning of all affected skull structures. This is important to achieve normal brain growth and to address craniofacial deformities. The neurosurgeon and craniofacial surgeon work together in cases where large portions of the facial skeleton must be repositioned or reconstructed. These two surgical disciplines also cooperate in the reconstruction of the craniofacial skeleton following tumor excision or trauma. Through a combined neurosurgical and craniofacial approach, these major operations can be performed safely and successfully. The neurosurgeon also treats patients with hydrocephalus, a condition that occasionally accompanies craniofacial syndromes, as well as patients with traumatic injuries affecting the skull or the brain.
Children with cleft lip or palate conditions often have associated middle-ear problems. These range from mild fluid buildup to frank infection. The otolaryngologist coordinates medical and surgical therapy with the rest of the team members in order to normalize hearing as much as possible. This is extremely important if the child is to develop normal speech. The Velopharyngeal Insufficiency (VPI) Clinic is run under the guidance of Dr. Mark Gerber in association with Ms. Denise Duncall. This clinic provides a pathway for the diagnosis and treatment of children with nasal escape and associated hypernasal speech. In addition, the audiology and speech department is run under the guidance of the Division of Otolaryngology.
We are fortunate to have at Children’s Dr. Lauren Hollinger, Chief, Division of Otolaryngology, a leader in the diagnosis and management of pediatric airway problems. Children with craniofacial anomalies such as Treacher Collins Syndrome and its variants, Nager’s and Miller’s Syndromes, Pierre Robin abnormality, or midface hypoplasia often have significant airway impairment. This is evaluated and treated by the otolaryngologist and may require diagnostic bronchoscopy and tracheotomy. In keeping with our philosophy of offering this team concept to a broader population of patients, we have worked with the Sleep Disorder Center at Children’s to provide options for patients with sleep apnea which has not responded to conservative care. These patient would not normally come under the care of a craniofacial team.
Ear deformity and hearing loss are frequent companions of many of the craniofacial disorders, such as Treacher Collins and its variants, hemifacial microsomia, Goldenhaar’s syndrome to mention a few. Some of these children may be candidates for the restoration of hearing through the use of cochlear implants. Dr. Nancy Young is a neurotologist who has specialized in the use of these new technologies.
The otolaryngologist also treats children with head and neck tumors. Dr. John Maddalozzo specializes in diagnosis and treatment of pediatric head and neck tumors. The more difficult of these tumors are treated with a team consisting of Otolaryngology, Pediatric Oral and Maxillofacial Surgery and a Craniofacial Surgeon. They are managed in coordination with the Division of Hematology Oncology to provide the most comprehensive care possible.
Janice B. Lasky, MD
Children with craniofacial disorders may experience a variety of eye problems requiring the expertise of an ophthalmologist. A large number of craniofacial patients have strabismus, a misalignment of the eyes; in children with Apert and Crouzon syndromes, the incidence may reach as high as 50 percent. In other children, such as those with Treacher Collins and related syndromes, abnormalities of the tear duct system and eyelids may lead to severe functional problems. A routine pre-operative exam is required prior to any fronto-orbital procedures in cases of synostosis. These procedures often require orbital osteotomies and orbital repositioning and can therefore effect the balance of the musculature of the globe. The timing of ophthalmologic intervention is critical to the overall treatment plan. Many of the strabismus procedures or tear duct reconstructions, for example, are best carried out after major bony reconstruction has been completed. A small but significant incidence of cataracts is present in patients with craniofacial anomalies. In contrast, cataracts must be operated on very early in life to avoid giving the patient permanent visual impairment.
In some complex conditions, consultation by the geneticist is essential in determining the cause and nature of the syndrome or disease, or in fact if a syndrome exists. This is extremely important for treatment planning as well as for determining a child’s prognosis. Genetic consultation and evaluation includes review of the medical and family history as well as examination of the child. Genetic counseling involves not only a discussion of possible syndrome involved but also the risks for recurrence in future siblings and parental options for screening, monitoring, and detection. Chromosomal studies are be obtained when necessary.
Dental care begins in infancy with obturation when necessary, good oral hygiene, fluoride supplementation and overall maintenance of a healthy dentition. As the child grows and the permanent dentition erupts, maintenance of good oral and dental hygiene becomes critical, particularly since many craniofacial patients require combined orthodontic and surgical management. Such treatment is possible only if the teeth and gums are maintained in healthy condition. Because we feel so strongly that dental care and hygiene is critical to the good health of these children, our policy is that every patient is seen at every visit to the team by one of our pediatric dentists. This provides a continuity of care outside of the surgical focus and helps ensure that these parts of the patients care do not fall between the cracks. Children with cleft lip and palate and other craniofacial conditions have unique dental needs requiring a specialist in pediatric dentistry. In many conditions affecting the craniofacial skeleton, teeth may be absent, misshapen, or even duplicated. The pediatric dentist may be called upon, along with the pediatric oral surgeon and craniofacial surgeon, to intervene in such cases.
Bailey Jacobson, DDS
Ron Jacobson, DDS
We are fortunate to have a group of orthodontists on our team with many years of experience with cleft lip and palate as well as craniofacial patients, along with their extensive experience with the typical orthodontic and orthognathic problems of adolescents and young adults.
The orthodontist on the craniofacial team serves as an integral part of the diagnostic team whose primary concern is the growth and development of the face in its relation to the ultimate position of the teeth. By analyzing standardized cephalometric radiographs, panoramic radiographs, plaster models and other diagnostic techniques, the orthodontist can identify and quantify the anatomic basis of abnormal craniofacial development in relation to maxillary and mandibular growth and occlusal relationships. The craniofacial orthodontist is also a structural architect. In a cleft palate infant, he fashions a pre-surgical orthodontic appliance in order to guide the segments of the maxilla (upper jaw) into a position which will provide a more appropriate arch form and facilitate lip closure by the plastic surgeon. In a young adult, the orthodontist will often need to align the teeth prior to surgical jaw reposition. His planning and participation in the pre-surgical preparation of the teeth is critical in the eventual outcome of the treatment plan. Dental records and models, as well as cephalometric radiographs are obtained when appropriate. These records are valuable in tracing long-term growth and in treatment planning.
While surgery may be the most apparent aspect of correcting a craniofacial disorder, psychological treatment may be key to allowing a child, adolescent and family to experience optimal healing and long-term success. This psychologist also works to break down barriers of communication that may result from parents’ frustrations related to their many responsibilities in meeting the needs of their child.
Children are evaluated and treated both pre- and post-operatively by a speech pathologist. Craniofacial conditions and their correction usually affect the structures required for functional speech. Evaluation includes diagnostic technology to identify, correct or predict speech problems with great accuracy and long-term effectiveness. Computerized speech assessment using aerodynamic and acoustic instrumentation, video fluoroscopy and video nasoendoscopy are available if indicated. These techniques allow visualization of anatomic movement during testing and offer valuable information to the plastic surgeon or otolaryngologist should surgical intervention be necessary.
Audiologic assessment, performed in conjunction with speech assessment, includes impedance studies to assess the middle-ear functioning, auditory brainstem response, computerized hearing assessment, hearing-aid evaluation and fitting, as well as central auditory precessing testing. Through these sophisticated techniques, it is possible to completely evaluate the hearing function in even the very young or uncooperative child, as well as to pinpoint the location of the hearing problem.
The occupational therapist provides feeding and oral motor developmental consultation to the craniofacial team. The therapist performs a comprehensive oral motor evaluation and feeding assessment on each child. Family involvement in home programs and participation in specialized feeding techniques are strongly encouraged. The goal of therapy is to promote weight gain, to enhance the child’s feeding skills and to maximize sensory and oral motor development. If there is concern about the child’s overall development in addition to feeding problems, a developmental evaluation is performed to further assess the child’s gross and fine motor skills. Physical therapy may also be consulted if a long-term developmental program is necessary.
A craniofacial diagnosis carries with it some difficult social and emotional implications. The social worker provides guidance and counseling for the patient and family. Serving as a link between the patient, family and craniofacial team, the social worker works to assure open communication, understanding and coordination of care. As a link with the community, the social worker provides referrals for continued psychological care after discharge and organizes the parents’ support group.