Cleft-Craniofacial Center

Transcription

1 Cleft-Craniofacial Center

2 A Pioneering T eam 2

3 Welcome to the Cleft-Craniofacial Center at Children s Hospital of Pittsburgh The Cleft-Craniofacial Center at Children s Hospital of Pittsburgh has been a leader for 50 years in the treatment of patients with cleft and craniofacial anomalies and is the largest cleft-craniofacial center in the region. More than 1,200 infants, children and adolescents are evaluated and treated each year by skilled specialists from a variety of disciplines. Children s Hospital s cleft-craniofacial specialists are among the best in the world in their respective fields. They are trained to care for children with a wide variety of craniofacial conditions including cleft lips and palates, craniofacial clefts, abnormally shaped skulls, craniofacial tumors, wide-set eyes, malformed ears, congenital birth marks and other conditions affecting the growth and shape of the skull, face, ears and eyes. Our specialists take a team approach to evaluating and treating patients with a wide variety of congenital or acquired craniofacial conditions. We work together to identify a child s needs and provide the appropriate treatment striving to achieve optimal appearance, speech, hearing and psychosocial development at the earliest possible age. 3

4 4 The First Evaluation

5 The ideal time for the first evaluation is within your child s first few weeks of life or earlier. Early Diagnosis The ideal time for the first evaluation is within your child s first few weeks of life or earlier. Advances in technology, including high-resolution ultrasonography and genetic testing, provide opportunities for diagnosis even before birth. A prenatal consultation can help parents understand their child s condition and treatment options, and clarify their expectations. When your child s pediatrician makes a referral to the Cleft-Craniofacial Center, the team coordinator determines which specialists are best suited to meet your child s needs. For your convenience, your child is evaluated during a single visit to the Center. Together, the specialists develop a comprehensive diagnosis and integrated treatment plan. After the visit, the findings are communicated clearly to the family and primary care physician. During the course of evaluation and treatment, the team coordinator serves as a liaison between you and your child and the cleft-craniofacial team. The coordinator makes appointments, answers questions and coordinates your child s care. 5

6 The Skills of Many Expert Treatment The Cleft-Craniofacial Center s specialists are trained to address all aspects of a patient s diagnosis, treatment and recovery. Management of cleft-craniofacial conditions includes a variety of health care professionals because the skills of many different specialties are needed to help treat each aspect of the problem. The team s specialists include: Anthropologists: Clinical anthropologists take clinical measurements of the craniofacial skeleton as the child develops. They provide important feedback to the team regarding the success of surgical procedures. Audiologists: Hearing specialists evaluate hearing and work closely with the otolaryngologist (ear, nose and throat specialist or ENT) to manage hearing difficulties and middle ear disease commonly associated with craniofacial conditions. When a hearing loss is not medically correctable, the audiologist is available for consultation regarding the use of hearing aids or other assistive listening devices in conjunction with an auditory intervention program geared to the child s needs. 6

7 The Cleft-Craniofacial Center s specialists are trained to address all aspects of a patient s diagnosis, treatment and recovery. Dentists: Pediatric dentists address the significant dental abnormalities exhibited by many craniofacial patients. They oversee pre- and post-operative diagnosis and treatment needs. Family Liaisons: Family liaisons provide support and networking for parents of children with craniofacial anomalies. They are parents of children with craniofacial conditions who have first-hand knowledge of the stress, challenges and rewards of these special children. Geneticists and Genetic Counselors: Genetic counselors are available to review the family history. Clinical geneticists can help review the medical history, examine the patient and help with diagnosis. They can also provide information regarding risk of recurrence in future pregnancies. Neurosurgeons: Pediatric neurosurgeons are experts in diagnosing and treating children with neurological conditions associated with craniofacial anomalies. Diagnosis and treatment are closely coordinated with the craniofacial surgeon to allow for appropriate timing of craniofacial procedures to optimize development and neurological functions. Continued on Page 8 7

8 Comprehensive C a r e Expert Treatment Continued from Page 7 Nurses: Clinical nurses and Pediatric Nurse Practitioners (PNP) monitor each child s growth and development and assist the physicians in all aspects of care. PNPs are responsible for directing clinic flow of patients and providers, as well as assuring that individual patient needs are being met. PNPs also ensure continuity of care through pre-operative teaching, inpatient management and post-operative follow up. Ophthalmologists: Physicians who specialize in the structures, functionality and diseases of the eye evaluate and help plan treatment of eye problems in coordination with other procedures. Oral and Maxillofacial Surgeons: Oral and maxillofacial surgeons are specially trained to correct the soft tissue and bone of cleft-craniofacial deformities from infancy through adulthood. They carefully plan surgical procedures with the team to optimize function as well as appearance of the face, skull, jaws and smile. Orthodontists: Orthodontists coordinate a treatment plan with surgeons and other specialists to ensure proper alignment of teeth and jaw before and after surgical procedures. Otolaryngologists: ENT surgeons who specialize in the care of children with cleft and craniofacial anomalies evaluate and provide treatment for obstructive airway problems, ear infections, hearing loss, and sinus and nasal diseases including allergies. They work closely with other members of the cleft-craniofacial team to treat the patient s sleep, hearing, speech and swallowing problems. Pediatricians: The team s pediatricians are specially trained to evaluate the patient s health and attend to the special needs of children with congenital and developmental craniofacial anomalies during the treatment program. Plastic Surgeons: Plastic surgeons specialize in correcting the soft tissue and bony deformities of cleft and craniofacial anomalies. These procedures optimize anatomical function and appearance. Surgical procedures are timed during growth and development to achieve desired outcomes and normal development. Craniofacial procedures are frequently performed in conjunction with pediatric neurosurgeons. 8

9 Prosthodontists: The team s prosthodontists work closely with the patient s surgeon, orthodontist and dental specialists pre- and post-operatively to plan for and provide necessary prosthetic habilitation when surgical procedure alone cannot correct anatomical abnormalities. They also coordinate production of prosthetic speech aids with the Center s speech pathologist. Psychologists: Psychologists are available to assess the patient s developmental progress and psychosocial adjustment, including behavioral and emotional functioning. They assist the family in identifying resources for developmental and therapeutic intervention. Psychologists also provide the family with suggestions and interventions for immediate developmental and behavioral issues. Radiologists: Radiologists work closely with surgeons, physicians and other professionals treating your child. They perform and interpret many different radiographic procedures that are necessary for the diagnosis and comprehensive treatment of children with cleft and craniofacial conditions. Social Workers: Social workers provide guidance and counseling for patients and families as they deal with the social and emotional aspects of a facial difference. They can provide support to deal with the stresses of surgical and medical procedures and assist in locating community resources and group supports. Speech Pathologists: Speech and language specialists evaluate the development of speech and provide input to the team that facilitates timing of surgical, orthodontic and therapeutic treatments to facilitate normal speech and language development. They also serve as the feeding and swallowing specialists to assist parents of children with feeding difficulties that are secondary to their craniofacial conditions. Referrals Pediatricians, primary care physicians, obstetricians, other health professionals, parents and patients can make referrals to the Cleft-Craniofacial Center. Contact the team coordinator at

10 Moving F orward Responding to increasing demand for its many pediatric services and research programs, Children s Hospital is building a new 1.2-million-square-foot campus, scheduled to open in the Lawrenceville section of Pittsburgh in Contact Us Children s Hospital of Pittsburgh Division of Plastic and Reconstructive Surgery Cleft-Craniofacial Center 3705 Fifth Avenue Pittsburgh, PA Phone: Fax:

11 M I S S I O N Children s Hospital of Pittsburgh is dedicated to improving the health and well-being of all children through excellence in patient care, teaching and research. Contributors Rendering Astorino 2003; Photographs Annie O Neill

12 3705 Fifth Avenue Pittsburgh, PA SL/JY M HP