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Regional Cleft Care This document was generated through the work of the Palestinian Cleft Society
Core Committee, and represents the combined work of forty-five individuals. Standards for Cleft Care
These bottles and nipples will be made available to all centers with cleft teams
for distribution in the regions near those hospitals. Because a child
with a cleft is likely to have problems with hearing, an ENT surgeon who is capable of placing myringotomy
(ear) tubes, will evaluate the child. An Audiologist will assist in evaluating the children’s hearing.
A Pediatrician will perform a thorough exam to rule out other congenital anomalies. Because there is a strong
genetic component to clefting, each child will be seen by a Geneticist. Preparation for Surgery If the cleft of the lip is wide, a taping regimen will be initiated (See picture). Taping involves
placing duoderm on both cheeks, and then placing either tape or a steri strip from the check areas across the open area
of the lip. Swallowing and feeding evaluations need to be continued if the child is not gaining weight adequately. Orthodontic Care Orthodontists will evaluate every child with a cleft at 5 years of age, and then once
a year. The Orthodontist will help to determine the time for alveolar (gumline) bone grafting, and will continue to guide
care following the bone graft (see below). The Orthodontist will also assist in preparation for Orthognathic surgery
(see below). In these cases, the Orthodontist will work carefully with the surgeon performing these procedures. Alveolar Bone Grafting Between the ages of 7 and 10, a child with an alveolar (gumline) cleft will require a bone
graft. The Orthodontist will help to determine the timing of the graft, which is based on the eruption of the lateral incisior.
The bone is taken from the hip, and placed in the alveolar cleft. The bone graft is taken from the hip and placed
into the alveolar cleft. After the bone graft, the patient will follow-up at 4 months with an orthodontist, who will continue
to be in contact with the surgeon. The Palestinian Cleft Society will assist in providing inexpensive, dental and orthodontic
care for all individuals with clefts. Materials will be provided for dentists and orthodontists in order to assist
them in lower costs for their services. Orthognathic
surgery At skeletal maturity (for girls 15 years
of age and males, 18 years of age), patients with clefts will be evaluated for Orthognathic surgery. Orthognathic
surgery involves surgical movement of the jaws in order to place the teeth in a proper relationship. Surgeons will
carefully plan with Orthodontists regarding preparation and timing for surgery. Completion of Care At
21 years of age, young adults with clefts will have completed their surgical care. The goal of the Palestinian Cleft
Society will be to assist these individuals in becoming fully functional parts of society. Education Education
about the care of children with clefts will be a central component of the mission of The Palestinian Cleft Society.
The Cleft Society will commit to educate health care practitioners and parents regarding the recommendations in this Cleft
Protocol. Cleft Teams National Cleft Registry At present, there is no national health registry in Palestine. Additionally, there
is no established protocol for collecting information on children with clefts. In this vacuum, the Palestinian Cleft Society,
with the Palestinian Ministry of Health, the Palestine Children’s Relief Fund (PCRF) and SmileTrain, propose establishing
a National Cleft Registry. The purpose of this registry that will be to identify all children with
clefts in the West Bank and Gaza, to guide and coordinate care for these children, with the goal that this registry will
be a model for other similar health-related registries. The Registry can be accessed at the website of the Palestinian
Cleft Society (www.palestiniancleftsociety.com), and finding the tab for the National Cleft Registry. There will be six referral centers for the National Cleft Registry:
Rafidiah Hospital in Nablus, Ramallah Government Hospital, Al-Alia Hospital in Hebron, Makassad Hospital in Jerusalem, Shifa
Hospital in Gaza City, and the European Hospital in Khan Younis. These referral centers will correspond with the locations
of the locations of the cleft teams. Each of these hospitals will have a coordinator to enter data into the National Cleft
Registry. This individuals name, and contact information will be advertised to the region that the individual is serving.
Uploading of information into the National Cleft Registry
will be password protected and will be reviewed on a monthly basis. The goal of these endeavors will be to ensure
that the information is accurate. The support of multiple
individuals and organizations will be required for the success of the National Cleft Registry. The organizations (or groups
of individuals) that the Palestinian Cleft Society has identified who will be crucial to the development and maintenance
of the National Cleft Registry include the Minister of Health, Dr. Fathi Abumoghli (who is aware of the
project, and has given tentative approval), the Director of Government Hospitals, Naim Sabra (who is also aware of the project,
and has given tentative support), as well as the individual hospital directors. The Palestinian Pediatric Society
is also crucial, and the current president, Dr. Samir Khalil, has also been approached and is interested in assisting in
the project. In addition, the Palestinian Society of General Practitioners, the Palestinian Society of Obstetrics and
Gynecology, the Palestinian Nursing Society, the Organization of Palestinian Midwives (Department at Al-Quds University),
are also crucial and are currently being contacted for their support. In addition, and most crucially, a critical partner in the National Cleft Registry will be the
parents of children with cleft lip and palate. They must be aware of the existence of the registry, and be willing
to enroll their children. Coordinators for the Cleft
Registry The six coordinator positions (four positions
in the West Bank and two in Gaza) must be held accountable for completeness and accuracy of the information collected.
The project will need to have an administrator who will be responsible for data management, interpretation and dissemination.
Organizations that may be willing to partner in this project include SmileTrain, the World Health Organization, and USAid.
We are in the process of contacting these organizations. Benefits
of the National Cleft Registry In order for parents
and family members, as well as health care workers, to cooperate with the National Cleft Registry, there
must be clearly delineated benefits to participating in the Registry. The major benefits of involvement in the Registry will center on early and timely identification by a wide range
of professionals to the birth of a child with a cleft. This will allow the family and patient, the following: |
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