Continued Excellence in Cleft Lip and Palate and Craniofacial Care and Research
Cindy Guernsey RN, BScN
Irena Hozjan RN, BScN
Christopher Forrest MD, MSc, FRCS(C)
In 1953 Dr. Egil Harvold was appointed to the Research Institute of the hospital to demonstrate the efficacy of a team approach to cleft lip and palate treatment. As a result of his studies The Hospital for Sick Children (SickKids) established a Cleft Lip and Palate Research and Treatment Centre in 1954 under the leadership of Dr. W. K. Lindsay. Presently under the leadership of Dr. Ronald Zuker, Medical Director of the Cleft Lip and Palate Program, 1986-present, the Cleft Lip and Palate Program has expanded tremendously and provides comprehensive interdisciplinary care to this patient population. Our team is comprised of health professionals from 13 different disciplines who believe the team approach is crucial in the provision of comprehensive family centered care. Team members meet and discuss their assessments of patients and families on a weekly basis, and formulate individual treatment plans. We have the largest Cleft Lip and Palate Program in Canada with 3,137 patients in active treatment. Last year we assessed and formulated a treatment plan on 156 new patients as well as performed 71 primary cleft lip repairs and 90 primary cleft palate repairs.
Early intervention education is an integral part of our program. A member of our team is available 24 hours a day to accept referrals from birthing hospitals to provide cleft and feeding information to families of newborns. When the Coordinator role for this program was established in 1988, the primary focus of the position was the development of services during the neonate period. It was apparent that the cleft infants were hospitalized longer than other non-affected infants in the community hospitals due to their feeding difficulties. Following an extensive educational process with 80 referring hospitals, a detailed referral protocol was developed. The newborn referral protocol ensures that the community hospital contact the program within 48 hours of the infant’s birth. The benefits of this protocol include; a reduced length of stay in the community hospitals; a decreased number of inpatient transfers to SickKids; and the ability of families to meet members of the SickKids Cleft Lip and Palate Team to have their questions and concerns addressed.
Over the last year the program has received an increasing number of referrals from prenatal diagnostic centers. Our Cleft Lip and Palate Coordinator Cindy Guernsey RN. met with 10 families with the intrauterine diagnosis of cleft lip and /or cleft palate. She provided ongoing education and support for then prior to the birth of their infant. Cindy is currently meeting with team members to develop a comprehensive coordinated protocol for treating and supporting the infant and family with Pierre Robin Sequence during their initial hospitalization.
Our Speech Language Pathologists have developed an internship program for their peers in northern Ontario. These individuals spend time at SickKids learning assessment and treatment techniques unique to the Cleft Lip and Palate patient. Our Speech Language Pathologists developed the "Step by Step" instructional video for speech therapy techniques for cleft palate speech. This exceptional video won the Canadian Association of Speech Language Pathologists and Audiologists Audio Visual Media Award in 1997. As a result it is utilized by Speech Language Pathologists world wide
Both the Cleft Lip and Palate and Craniofacial Programs are committed to providing information, education and support to patient, families and health care providers. We have developed multiple teaching pamphlets and booklets for this purpose. We also provide an annual psychosocial educational intervention day for children and their families. This unique concept was developed by the Cleft and Craniofacial Social Workers, Elissa Kline-Beber and Laura Beaune in collaboration with AboutFace. Each year this event features and focuses on a different age group. The theme for the upcoming day is "Becoming a Teenager: Changes, Choices and Challenges" and is directed to the 9-14 year old child and family. A unique improvisational support group was developed by Elissa Kline-Beber and Raylene Delorey, Speech Language Pathologist, in collaboration with a cleft affected adult. The focus of the group, which meets over the course of several weeks, is to enhance both speech and interpersonal skills through the medium of improvisational acting. This creative and successful concept will be presented, at the poster session, at the ACPA annual meeting in Scottsdale Arizona.
The appointment of Dr. Ian Munro in 1972 by Dr. W. K. Lindsay to the Division of Plastic Surgery heralded the beginning of the Craniofacial Program at SickKids and brought the radical new ideas of Paul Tessier from Paris to Toronto. Over the following 14 years, Dr. Munro was most productive in establishing SickKids as one of the leading international centers for the treatment of children with craniofacial disorders by initiating and refining new surgical techniques, developing a post-graduate fellowship program and stimulating interest and enthusiasm in those around him. During these years, both the Craniofacial and Cleft Lip and Palate Programs were coordinated through the Facial Treatment and Research Centre.
In 1986, following Dr. Munro’s departure to Dallas, Jeffrey Posnick was appointed as the Medical Director of the Craniofacial Program and through his efforts, established autonomy for the program as an entity separate from the Cleft Lip and Palate Program. Dr. Posnick initiated the Craniofacial Program registry in 1987 and since that time, over 4,000 patients with craniofacial disorders have been enrolled. Through Dr. Posnick’s efforts, the position of Craniofacial Coordinator was established providing further consolidation for the program and was most capably managed by Ms. Linda Power until 1997. During his time at SickKids, Dr. Posnick was extremely prolific, and wrote over 75 peer-reviewed articles and book chapters related to the management of cleft and craniofacial problems based upon his experience at SickKids.
John Phillips, a graduate of the University of Toronto Plastic Surgery Program and a former Fellow of Ian Munro’s, assumed control as Medical Director of the Program in late 1992 and continued the tradition of clinical excellence for the children with craniofacial disorders until 1999. Over the past 5 years, numbers of patients seen in the program have increased dramatically. Last year, 265 new patients were seen in the clinic and over 1,500 patients are followed actively. Dr. Phillips was also instrumental in establishing the Vascular Malformation Program, which provides a coordinated interdisciplinary approach to assessment, treatment, surgical and radiological interventions to children with large hemangiomas and vascular malformations. The members of this unique program include; Derek Armstrong, Pediatric Interventional Neuroradiologist; Bernice Krafchik, Dermatologist; and Dr. Phillips and Dr. Zuker, Craniofacial and Plastic Surgeons. A patient protocol has been developed for all new referrals. We presently see 60 new patients a year in our twice monthly clinics
Expansion of the Craniofacial Program occurred early in 1999 with the appointment of Christopher Forrest as the new Medical Director and renaming of the program to SickKids Centre for Craniofacial Disorders. Major goals of his leadership proposal include the development of a research program in basic and clinical sciences, institution of a relational database to facilitate patient-based studies, creation of an educational program for patients and families and continued expansion in the area of new technologies and treatment innovations. With ever increasing patient load, clinical responsibilities are now shared by two surgeons thus maintaining excellence in clinical care for patients and families. Consistent in the program throughout the years has been the presence of Leslie Farkas, who’s extensive research and publications in the field of craniofacial anthropometry have earned him an international reputation.
SickKids Centre for Craniofacial Disorders acts as a tertiary referral Centre for the province of Ontario as well as the rest of Canada. However, each year, substantial numbers of referrals are received from many parts of the world, ranging from China to Antigua. While the cut-off age for active in-patient treatment is 18 years, continuity of care for over age patients is maintained through adult hospital appointments to complete treatment plans initiated in some cases, many years earlier. Consultations for adults with craniofacial disorders are facilitated through the program in this manner. Community outreach is essential to the care of the Cleft Lip and Palate and Craniofacial patient. In participation with the Easter Seal Society and the Bloorview MacMillan Centre, SickKids team members travel to four northern Ontario communities yearly to provide assessment, treatment planning with health professionals from the community and follow up assessments for our patients and their families who find it cumbersome and costly to travel vast distances several times yearly for clinic appointments.
The full spectrum of craniofacial disorders are seen in the program. An interdisciplinary approach is essential to the successful care of these children and is facilitated by drawing on the expertise of over 20 specialists and departments within and affiliated with SickKids. Children seen in the twice weekly clinics are reviewed at a multi-disciplinary Craniofacial Conference held on a monthly basis. Consensus management has proven to be effective in the organization of a treatment plan for these children. The team conference is also used as an opportunity for the interchange and presentation of research ideas, new projects and feedback. Collaboration is key and excellent interdisciplinary relationships have been maintained over the years and have provided for a stimulating and mutually beneficial working environment.
One of the important elements in effectively managing this team of health care professionals and ensuring excellence in patient care is the position of Craniofacial Coordinator, currently occupied and managed by Irena Hozjan with the clerical assistance of Maria de Vera and Gigi Conception. This key position organizes all aspects of the clinical component of the program thus facilitating efficient multi-disciplinary patient assessments.
A structured approach to research is facilitated through the SickKids Research Institute which promotes collaboration using a matrix arrangement. Research is the key to future success and a major priority for the Craniofacial Program. The SickKids Centre for Craniofacial Disorders has an active laboratory with research currently being performed in the areas of tissue engineering, bone wound biology and exciting new technologies such as distraction osteogenesis and minimal access surgical techniques. Access to whole animal, cellular and molecular research techniques permits research fellows and residents engaged in the Surgeon-Scientist Program, a rewarding and productive experience in research.
SickKids is the major pediatric teaching hospital in Canada and affiliated with the University of Toronto. Each year, the Cleft and Craniofacial Programs provide an exciting educational experience for medical and nursing students, ancillary health professionals and fellows from around the world. We were pleased to host an ACPA visiting scholar to our Centre and look forward to continuing this tradition.
Success of our programs does not occur in isolation. The Cleft and Craniofacial Programs are well supported by SickKids which recognizes the importance of these programs as a priority for the hospital. In addition, funding made possible from the Province of Ontario Ministry of Health is key in providing the best possible care for the children in our programs.
In 1875, SickKids came to be through the efforts of Elizabeth McMaster who set up six iron cots in an 11 room house in downtown Toronto "for the admission and treatment of all sick children". In 1999, at the dawn of the new millennium, SickKids Centre for Craniofacial Disorders and Cleft Lip and Palate programs will continue to strive to carry on the same goodwill and vision in our commitment to providing comprehensive state of the art treatment and care in all aspects of the management of children and families with cleft and craniofacial disorders and to developing a pre-eminent internationally recognized Centre for craniofacial research and education.