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Table of content

A word from cleft lip and palate team chairmen 2

Mission and values 3

Objectives 4

Achievements 5

Future views 6

Team members roles 7-18

Haberman bottle 19

2013 statistics 20

Types of operations 21-26

Clefts calendar activities 27-34

Future Events 35

Cleft Lip & PalateProgram

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The Cleft Lip and Palate program ( CLP ) has been officially launched in king abdulaziz medical city MNGHA – Riyadh in 2008 comprising of a professional association of highly qualified spe-cialist recognized experts in their fields .

The “ rainbow of hope “ cleft lip and palate team ultimate goal is to create a patient—centered friendly medical environment dedicated to treat , improve health status and support social and psychological needs of our patients and their families adhering to the highest medical and ethical standards .

Our integrity is our cornerstone character and together with our religious identity , social responsibilities and traditional believes we built a culture of transparency, ethics , honesty and trust .

Our mission is to heal their smiles and make their lives better !

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MiSSION

Our values define who we are ...

1. patient—centered care

2. prioritizing religious Identity and traditional believes

3. patients safety & assurance .

4. promoting collaborations.

5. social responsibilities

6. professional—trustworthy reputation .

1. To provide optimum care to all craniofacial anomalies and cleft lip and palate ( CFA & CLP ) patients in a patient— centered environment through a team oriented approach .

2. To address all the needs and demands in the CFA & CLP center of excellence that provides all range of services gathered under one roof .

3. To improve the quality of life of our patients and their families .

VALUES

Objectives

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Several objectives were traced to reach our goals :

1. To reach internationally care standards and become an international accredited CFA &CLP Center.

2. To assess the quality of life of our patients and their families and delineate their needs and demand that will represent the baseline from which our treatment strategy will be build .

3. To establish a CFA & CLP Center in King Abdulaziz Medical City that will provide all needs and d emands in an efficient and timely organized treatment protocol.

4 . To spread knowledge to patients and practitioners through all media-oriented channels.

5. To conduct a national survey assessing the incidence of occurrence of the CFA & CLP and to plan future needs .

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Achievements

1. National Guard CLP team was accredited by the American cleft palate association in a conformity to the international standard of care .

2. The creation of CFA & CLP Center of Excellence has been approved by the national Guard health affairs high authorities to be nested in the children hospital KASCH .

3. CLP awareness day was conducted in October 2013.

4. Instructional informative brochures were successfully completed and made available in all patients frequently visited sites and waiting areas

Future Views

1. We are dedicated to continue upgrading the quality of care provided to our patients.

2. To build an evidence based experience and to excel .

3. We are aiming to build a research data base and to stimulate and support researches that will open before as new scientific horizons.

And most of all our future goals will become an internationally well-known Center of Excellence .

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Our team members andtheir basics roles...

Plastic Surgery

• Surgically restore the normal functional and anatomical features of cleft lip, which is usually done at age of 3-6 months.

• Cleft palate closure by the age of 12-18 months in order to achieve normal function such as of speech and swallowing.

• Perform surgical intervention if needed following velopharyngeal inadequacy (VPI) assessment done by a speech therapist between the age of 5 to 6 years.

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General Pediatrics

General Duties

• Assess all common Pediatric issues including nutrition, growth development, immunization and psycho-social issues.

• When special needs are identified, referral to appropriate specialists will be necessary.

• Frequent monitoring of children who may be at risk of growth failure, delayed development, neglect, psycho-social disturbance or any other significant problem.

• Evaluate and discuss with team members the health status of patients prior to any surgery or needed procedures.

Prosthetic Dentistry

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General Duties • Deliver Prosthetic therapy aids to CLP patients that will allow developing normal speech , promoting deglutition and mastication and closing the oral cavity separating it from the nasal cavity .

• During childhood, to overcome speech difficulties an obtura tor is needed that will close the palatal gap and prevent air escape and liquid regurgitation .

• Post alveolar bone graft in the clefted area, a tooth implant is done .

• The final touch of the prosthodontist will be directed toward working remaining little occlusal imperfections to reach the perfect esthetic and functional balance which play a role in the psychological and social acceptance of the cleft lip and palate patients .

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General Duties • As primary dentition erupts, a full dental evaluation will be done in order to provide control, preventive measures, and space management.

• Congenitally missing teeth may be replaced with removable or fixed appliance.

• Provide follow up to monitor oral hygiene and develop appropriate preventive program.

Pediatric Dentistry

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Oral & Maxillofacial Surgery

General Duties

• Pre-surgical use of an orthopedic device (Latham appliance) to align the maxillary segments prior to initial Cleft lip closure

• Maxillary distractor during the pre-school, mixed dentition stage.

• Early orthognathic procedures to correct the occlusal discrepancies.

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General Duties

• At birth pre surgical orthodontics prior to lip closure . • During growth :

1. Redirect maxillary and mandibular growth via (maxillary expansion and retraction) 2. align the maxillary dentition if teeth irregularities appearance causes the child psychological discomfort or if teeth are traumatizing surrounding soft tissues .3. Prepare the clefted site to receive the alveolar bone graft .

• During adolescence :

1. Align maxillary and mandibular teeth using fixed appliances = full comprehensive orthodontic treatment. 2. Prepare for orthognathic surgery if needed .3. Detail the occlusion post-operatively.

Orthodontics

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General Duties

• Collecting medical information including family history and physical examination.

• Looking for associated genetic syndrome or related hereditary disorder.

• discuss recurrence risks and give parents and adult patients detailed genetic counseling.

• Evaluate patients at least once in the neonatal period and the second visit at 5-6 years of age if needed while the last visit is post adolescent or premarital period.

Medical Genetics

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Otolaryngology

General Duties

• Physical examination of the ears and appropriate assessment of hearing sensitivity.

• Audio logical evaluation to monitor middle ear status include audio logical and hearing assessment by Acoustic-immittance emission (Oto- Acoustic Emissions test) and tympanometry measures .

• Evaluate all children undergoing myringotomies and ventilating tubes placement pre and two weeks postoperatively .

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Social Worker

General Duties

Patients and families pass through several stages of social stress with coping. Social worker will play major role and will: • Provide information about family support, assess patients and families resources, needs, and understanding of patients developmental needs.

• Social skills training to help children and adolescents learn how to handle stressful social situation.

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General Duties

Psychological stress related to coping with cleft leads to many difficulties such as developmental, behavioral and emotional. This causes inconvenience to patients and families.

The psychologist will :

• Provide full support through assessment of the psychological environment as well as the impact of the condition on patients and families.

• Perform psychological and social screening on parents and the child at regular period starting from the neonatal.

Psychology

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Speech Therapy

General Duties

• Screen all CP patients for speech and language, assess expressive language development, evaluate vocal quality and maintain records including the treatment plan.

• Even if speech-language development has been appropriate, screenings will take place on a regular basis and at least every three years until dental and skeletal maturity are reached.

• Perform Pre and post-treatment speech assessments, as they are needed for determining outcomes of surgical management of the velopharyngeal system.

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Clinical Dietitian

General Duties

Feeding is the highest concern for babies born with cleft . Therefore, clinical dietitian will : • Assess nutritional status and growth.

• Closely monitor children who may be at risk due to malnutrition.

• Evaluate babies When born, before discharge and one week later.

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Nurse Coordinator

General Duties

• Meets CLP families, obtain medical history and introduce the program.

• Explain to family/caregiver beyond the abnormality the other possible complications that may be associated with CLCP.

• Coordinate the activities of the multidisciplinary team and facilitate the patient care.

• Booked appointments and following an integrated specialties time table according to the adopted treatment protocol.

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Babies with cleft lip alone usually do not have feeding troubles. However, this occurs in cleft palate patients. A cleft in the roof of the mouth makes it difficult for the baby to suck forcefully enough to draw milk through a nipple.

In addition, some babies have problems with gagging, chocking or milk coming out through the nose while feeding. To overcome these difficulties, we deliver special teat designed to make feeding easier for babies. (Haberman Feeder).

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2013 Statistics

From January 2013 till December 2013 , 29 patients were accepted and enrolled in cleft lip and palate multidisciplinary program . Cleft classifications , gender , family history , eligibility and living places all are presented and explained within the few next pages ..

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Cleft Classification and Occurence Rate (2013)

Over twelve months period, the number of unilateral cleft lip cases were twelve cases which represent 41.4% of all cases . Next in ranking , total cleft hard and soft palate cases were seven cases equals to 24.1%(Table 1).

Unilateral Cleft lip 12 41.4

Bilateral cleft lip 3 10.3

Cleft soft palate ( incomplete) 2 7

Cleft hard and soft palate ( complete ) 7 24.1

Unilateral cleft lip and palate 5 17.2

Bilateral cleft lip and palate 0 0

Total 29 100%

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Eligibility

Eligible 15 51.7

Non eligible 14 48.3

Tota 29 100%

KAMC is a tertiary referral institution therefore accepting a non-NGHA cases based on diagnosis. A total of fourteen patients (48.3%) were referred from other organizations while 51.7% of patients were NGHA eligible patients( Table2 and Figure1 )

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Inside (Riyadh) 17 59

Out side 12 41

Total 29 100%

our data showed that twelve families were living outside Riyadh (41%) such as Qassim , Hael , Jazan etc . For those patients , the arrangement for surgery, admission or follow up require more time and efforts (Table 3 and Figure 2)

Living places

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Family History

+ve family history 4 13.8

-ve family history 21 72.4

unknown 4 13.8

Total 29 100%

Four Families from a total of twenty nine had histories of clefting regardless of the type, while twenty one which represent (72.4% ) from the total number of our patients had no family history of any type of cleft. Four families they were not aware of any history of cleft in their families .

Table 4 and figure 3

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Male 19 65.5

Female 10 34.5

Total 29 100%

The percentage of male / female CLP patients was found 9 to 10 regardless of the type of cleft .(Table 5 and Figure 4).

Cleft

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Cleft Lip 14

Cleft Palate 14

Alveolar Bone Graft 7

Palatal Fistula 3

Lip Revision 5

Z Plasty 1

Surgical performed procedures in CLP patients 2013

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CLP Program Calendar & Activities

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On the 5th of December 2012 , during the CLP monthly meeting a collaboration proposal with king Faisal Specialist Hospital presented by our guest Dr. Aziza Al Johar the Head of Cleft Lip and Palate in KFSH who invited us to participate in the national CLP registry initiated by King Faisal Hospital .

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October 3rd 2013

The CLP “ Rainbow of Hope “ team organized an awareness day designed to patients , their families and interested care givers .

The great number of the attendees marked the success of the event

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Our Future Event...

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