scholarly journals MOTHERS' EXPERIENCES WHEN THEIR INFANTS WERE DIAGNOSED WITH CLEFT LIPS ANDIOR PALATES

2002 ◽  
Vol 7 (2) ◽  
pp. 12 ◽  
Author(s):  
Liezel Ter Poorten ◽  
Brenda Louw
Keyword(s):  
Emotional Support ◽  
Cleft Lip ◽  
Cleft Lip And Palate ◽  
Team Approach ◽  
Structured Interviews ◽  
Team Members ◽  
Postnatal Diagnosis ◽  
Information Interaction ◽  
Parental Preferences ◽  
Mothers Experiences

Traditionally the diagnosis of cleft lip and palate was made at birth or soon thereafter, but modem technology has led to the identification of cleft lip prenatally The aim of this study was to describe 16 mothers' experiences of pre- and postnatal diagnosis of their infants' cleft lip and palate, and to develop clinical guidelines for craniofacial team members, to meet parental expectations and needs in both pre- and postnatal periods. In order to provide the best possible care to each affected child and the most effective support to each mother, it is of the utmost importance that craniofacial teams have guidelines to assist them in developing a more accountable, effective and sensitive service to these mothers. An exploratory, descriptive quantitative survey research design was selected to describe mothers' reactions to and perceptions of the pre- and postnatal diagnosis. Scheduled structured interviews were used as a data collecting technique. The results indicated that, irrespective of the time of diagnosis, the mothers required support that included emotional support, information, interaction with other parents of children with clefts, and a team approach. This study emphasised the importance of understanding parental preferences in order to enhance the team approach and also highlighted the need for further research.

Prenatal diagnosis and management of Van der Woude syndrome

2016 ◽  
Vol 5 (1) ◽  
pp. 61-63
Author(s):  
Karla Ferreres García ◽  
Beatriz Berenguer ◽  
Luis Ortiz Quintana ◽  
Elena De Tomás Vicente ◽  
Ricardo Fernández Pérez-Pacheco ◽  
...  
Keyword(s):  
Cleft Lip ◽  
Autosomal Dominant ◽  
Cleft Lip And Palate ◽  
Ultrasound Examination ◽  
Craniofacial Anomalies ◽  
Dominant Inheritance ◽  
Van Der Woude Syndrome ◽  
Lower Lip ◽  
Postnatal Diagnosis ◽  
Variable Penetrance

Abstract We report the postnatal diagnosis of Van der Woude syndrome (VWS) in a foetus found to have an isolated right cleft lip and palate by ultrasound examination. After prenatal genetic counselling, the parents declined further evaluation by amniocentesis. At delivery, the infant was also found to have labial pits in the lower lip in addition to the cleft lip and palate identified by ultrasound consistent with VWS. Although VWS is rare, its autosomal dominant inheritance and variable penetrance should prompt additional modalities to more thoroughly evaluate the extent of other organ system and more extensive craniofacial anomalies.

Clinical Finding and Management of 12 Orofacial Clefts Cases with Nevoid Basal Cell Carcinoma Syndrome

2017 ◽  
Vol 54 (3) ◽  
pp. 338-342 ◽  
Author(s):  
Lee Mui Lee ◽  
Lian Ma ◽  
Tie Jun Li
Keyword(s):  
Basal Cell Carcinoma ◽  
Cell Carcinoma ◽  
Diagnostic Criteria ◽  
Basal Cell ◽  
Clinical Management ◽  
Cleft Lip ◽  
Cleft Lip And Palate ◽  
Clinical Phenotype ◽  
Team Approach ◽  
Alveolar Bone Grafting

Objective To study the phenotype and overview the clinical management on Cleft Lip and/or Palate (CL/P) with Nevoid Basal Cell Carcinoma Syndrome (NBCCS) patients in Peking University School and Hospital of Stomatology. Design Case series study. Main Outcome Measures To describe the clinical phenotype of 12 CL/P with NBCCS patients who fulfilled the diagnostic criteria as well as to explore clinical management. Results Seven cases (7/12, 58.33%) were classified as bilateral complete cleft lip and palate (BCCLP). Two cases (2/12, 16.67%) were classified as unilateral complete cleft lip and palate (UCCLP). Three cases (1/12, 8.33%) were classified as unilateral complete cleft lip (UCCL), submucosa cleft uvula (SCU), and bifid uvula (BU), respectively. The ratio of male/female was 9/3. Keratocystic odontogenic tumors (KCOTs) were presented in all 12 cases. The most common site was the mandible region (12/12, 100%) followed by the maxilla region (7/12, 58.33%). The diagnostic age of 12 NBCCS with CL/P ranged from 11 to 42 years old (usually postponed to the occurring of KCOTs). The delayed diagnosis of NBCCS can be attributed to its complicated clinical manifestations. In some cases, the mutual effect between the surgical therapy of removing KCOTs and alveolar bone grafting made the team approach (TA) of CL/P more complicated. Conclusion CL/P may become important clinical phenotype in NBCCS. The type of cleft varied, with bilateral cleft lip and palate comprising above 50%. Larger sample sizes are needed to study and confirm this result. KCOTs, as one of the most common clinical feature of NBCCS, make the diagnosis delayed and the TA more difficult because of the occurring time and site. This compels us to improve the diagnostic criteria to make an early diagnosis and explore a better therapeutic protocol for CL/P.

#CleftProud

2018 ◽  
Vol 55 (10) ◽  
pp. 1339-1349 ◽  
Author(s):  
Nicola Marie Stock ◽  
Anna Martindale ◽  
Claire Cunniffe
Keyword(s):  
Social Networking ◽  
Real Time ◽  
Emotional Support ◽  
Social Networking Sites ◽  
Online Survey ◽  
Cleft Lip ◽  
Cleft Lip And Palate ◽  
Dental Health ◽  
Time Data ◽  
Real Time Data

Background: More than 2 billion people worldwide now use social networking sites, with an increasing number of users accessing these sites to obtain health information and engage in emotional support. Yet, investigation of social networking sites in the context of cleft lip and/or palate (CL/P) has been scarce. Methods: Real-time data posted during 2 weeks in April 2017 were collected from 2 existing private Facebook groups (hosted by the Cleft Lip and Palate Association United Kingdom) using video screen capture software. The number of posts, comments, unique contributors, and post “likes” was recorded, as well as the type and theme of each post. Data relating to the benefits and challenges of participation in the 2 groups were also collected via an online survey. Results: A content analysis of real-time data identified perioperative care, associated syndromes, and dental health to be particular areas of concern for parents/caregivers. Expectations, experiences, and outcomes of further treatment were key topics of discussion for adults with CL/P. Common benefits of the groups included the ability to connect with others, learn about local events, give and receive emotional support, and obtain quick responses to queries in a semi-anonymous environment. Disadvantages of the groups included a reliance upon opinion rather than medical fact and the frequent use of inappropriate terminology. Conclusions: Social networking sites appear to be a helpful source of health-related information and peer support for the CL/P population, yet closer monitoring of these groups may be required.

scholarly journals Helping parents cope with a cleft lip and palate

Curationis ◽  
1980 ◽  
Vol 2 (4) ◽  
Author(s):  
Jenny Steyn
Keyword(s):  
Cleft Palate ◽  
Southern Africa ◽  
Emotional Support ◽  
Cleft Lip ◽  
Cleft Lip And Palate ◽  
Inherited Disorders ◽  
Doctors And Nurses

For the layman, the area of cleft palate is one shrouded in mystery and half-knowledge. An unrepaired cleft lip and palate is an unpleasant, if not alarming sight, and parents are not always totally convinced by the reassuring words of doctors and nurses that “ plastic surgeons do a marvellous job on cleft palate babies.” They need proof that their baby will indeed look and be like any other baby within a few months. Equally important, they need reassurance that whatever feelings they may experience when their babies are born are natural and appropriate ones. As the baby grows and develops parents may need practical assistance, emotional support and information regarding their baby’s condition. It is essentially for these reasons that a fellowship group has been established under the auspices of SAIDA (Southern Africa Inherited Disorders Association) to help parents and families of cleft lip and palate children.

Multidisciplinary Team Approach to Cleft Lip and Palate Management

2016 ◽  
pp. 479-497 ◽  
Author(s):  
LaQuia A. Walker Vinson ◽  
Donald V. Huebener ◽  
James E. Jones ◽  
Roberto L. Flores, ◽  
Jeffrey A. Dean
Keyword(s):  
Multidisciplinary Team ◽  
Cleft Lip ◽  
Cleft Lip And Palate ◽  
Team Approach ◽  
Multidisciplinary Team Approach

Cleft Lip and Palate: The Team Approach in a Military Hospital

1968 ◽  
Vol 133 (9) ◽  
pp. 727-730
Author(s):  
Gaspar W. Anastasi ◽  
Frank E. Ehrlich
Keyword(s):  
Cleft Lip ◽  
Cleft Lip And Palate ◽  
Military Hospital ◽  
Team Approach

A Survey of Cleft Lip and Palate Management Taught in Training Programs in Korea

2003 ◽  
Vol 40 (1) ◽  
pp. 80-83 ◽  
Author(s):  
Taik Jong Lee ◽  
Sang Tae Kim
Keyword(s):  
Cleft Lip ◽  
Cleft Lip And Palate ◽  
Training Programs ◽  
Preschool Age ◽  
Mixed Dentition ◽  
Team Approach ◽  
Velopharyngeal Incompetence ◽  
The Status ◽  
Cleft Lip Repair ◽  
Unilateral Cleft Lip Repair

Objective A national survey was conducted to obtain an overall view of the status, assess changes in trends of cleft management, and study new categories of interest. Method Questionnaires were sent to 90 chief residents of all Korean institutes with plastic surgery training programs. Results Forty-eight respondents returned completed questionnaires. The results were: (1) the most common unilateral cleft lip repair method used is the rotation-advancement technique (100%); (2) 73% of respondents correct cleft lip nasal deformity at preschool age; (3) the Millard technique is the most common management in bilateral cleft lip repair (65%); (4) in the management of protruding premaxilla, 44% of the respondents choose presurgical orthopedics; (5) the usual cleft palate repairs are the pushback (64%) and double-opposing Z-plasty (43%) in complete cleft palates and the double-opposing Z-plasty (75%) and pushback (36%) comprised the common techniques in incomplete cases; (6) 86% of responding programs perform alveolar cleft repairs during the period of mixed dentition; the most common treatment of velopharyngeal incompetence is pharyngeal flap (71%); and (8) the interdisciplinary team approach is practiced by 64% of respondents. Conclusions Many changes were noted since a previous 1995 survey. We hope that this study provides the necessary information needed for the eventual establishment of standard cleft management in Korea.

Sign in / Sign up

Export Citation Format

Share Document