Nov 1, 2019

2019 Globalgiving Quarter 3 Report

Experienced parent showing feeding cleft babies
Experienced parent showing feeding cleft babies

The Parent Groups for Newborn CLP Babies

There are four courses of ‘Parent Group for Newborn CLP Babies’ in a year, each course consists of three sessions.  Contents of each sessions are as follows:

Contents of Each Session

1)  Feeding & Choking / Cleft Treatment / Non-surgical Lip & Nose Correction / Public & Private Treatment Service;

2)  Caretaking after Lip Repair / Scar Massage / Nasal Splints / Feeding of Semi-solid Food; and

3) Caretaking after Palate Repair / Speech Problems / ENT Problems / Dentition Problems / Child Nurturing.

Nowadays, participants are mostly parents of unborn CLP babies due to the advanced technology of 3D/4D ultra-sound scanning during antenatal checkups around pregnancy of 20 weeks.  The contents of the three-session of Parent Groups covers the caretaking information of CLP babies from birth to 2 year of age. 

In order to enhance the spirit of mutual support, the courses are hosted by experienced parents whose CLP children have undergone part of the cleft lip and palate treatments.  They will provide power-point presentations of cleft information.  They will also share with the new parents their own experience on pre & post-operation care taking.  After the course, there will be follow ups, support and counseling to parents by the volunteers of ‘Along the Way with You Team’ and our staff.

In fact, many pregnant mothers or new parents, who know very little about cleft lip and palate, are worry ridden and feel very helpless when they first participate the activities of the Association.  However, after volunteers’ sharing of their practical experience, the new parents get more information and mutual support is then formed among them. Thus they are more confident to help their CLP babies to go through the long journey of surgeries and treatments for clefts. 

Besides, the Association also holds "Annual Reunion Day" for parents who have joined the four courses of ‘Parent Groups for Newborn CLP Babies’ during the year.  In the activity, the participants will share further information on CLP babies’ caretaking, speech problems, ENT problems, dentition problems, surgeries and treatments in future, preparation for inter-personal communications and for schooling etc.  The activity aims to give basic and all round knowledge to the parents so that they can give the best care and treatment to their children, get them well prepared for the future.

 

Oral Myofunctional Therapy Workshops

In cleft lip and palate patients, their maxillae tend to be under-development because of the interference of facial growth from the cleft deformity that is due to surgical repair of cleft palate during babyhood, in which palatal tissue is impaired and thus development of oral muscle is undesirable.  What is more, the palatal scar contracture during wound-healing process will affect patients’ growth of palate, resulting in a depressed mid-face, lack of upper incisor exposure, crowding of the maxillary teeth and a reverse malocclusion. 

Myofunctional Therapy can help cleft lip and palate children to correct incorrect tongue resting posture, tongue thrust swallowing patterns, open mouth rest posture and mouth breathing. It can help guide teeth into a more desirable relationship during a child’s early development (between the ages of 3 and 12) and enhance a child’s appearance and posture (which will last a lifetime). 

Myofunctional Therapy Workshop was held on 2 August.  During the workshop, participants will be arranged in parent-child groups of similar age range.  Then the orthodontists and dentists will show them the correct oral muscle function exercise, and teach the parents how to help their children to do daily practice so as to achieve the optimal results.

  

Early Orthodontic Treatment Pilot Project for 6-12 years old CLP Children

Atthough cleft lip and cleft palate are repaired before 1 year of age, the patient’s growth of maxilla and upper jaw may be affected.  When a CLP patient grows up, he may have their mid face and upper jaw underdeveloped causing underbite, “V-shaped” alveolus and misplaced upper frontal teeth, which results in speech problems, bite problems, undesirable appearance, low self-esteem, etc.  Therefore, secondary treatments, especially timely orthodontics, are very important to CLP patients.

Orthodontic Treatment between 6-12 years of age can help CLP patients in the following ways:

1) Application of orthodontic expender – It helps to expend “V-shaped” alveolus to the normal “U-shaped”one, giving more space for the crowded frontal teeth;

2) Application of Reverse pull Headgear – It helps to pull the upper jaw forward during the golden time of growth and thus correct the under bite problem; and

3) Correction of misplaced or irregularly aligned teeth so that the problem of underbite will be further minimized, and consequently the complexity of jaw surgery will also be alleviated.

The Association is fortunate to have four kind-hearted orthodontists to provide early orthodontic treatment for children with cleft lip and palate at charity rates. The Association is also fortunate have sponsorships by four charitable foundations, provision of dental room by the Chai Wan Baptist Dental Clinic.   We manage to implement this 'Early Orthodontic Treatment Pilot Project for Cleft Lip and Palate Children of 6-12 Years of Age' between 2019.1.1 - 31.12.2020.  What is more, children from low income families are eligible for partial sponsorships of the treatment fees.  Currently, more than 40 CLP children members of the Association are receiving orthodontic treatment under this pilot project.

Sharing among new parents
Sharing among new parents
Speakers giving talk on Myofunctional Therapy
Speakers giving talk on Myofunctional Therapy
A child trying munchee - appliance for teeth bite
A child trying munchee - appliance for teeth bite
Early Orthodontic Treatment Clinic
Early Orthodontic Treatment Clinic
A Child Wearing Reverse Headgear
A Child Wearing Reverse Headgear
Aug 2, 2019

2019 Globalgiving Quarter 2 Report

Alveolar Bone Graft Surgery Preparatory Workshops

The Association holds 'Alveolar Bone Graft Surgery Preparatory Workshops' twice a year in June and December as most of the cleft lip and palate children around 8-12 years old will have to undergo the surgery befofe Summer & Christmas Holidays so that they may have enough time for rehabilitation.  The latest one was held in mid-June.  Contents of the workshop included: brief talk about the merits for patients to receive the surgery, how to prepare for the operation psychological & physically, post-operation care and diet, dental hygiene, management of oral & hip wound etc.  Besides, some parents & patients who had recovered from the surgery were invited to share their fresh experience of surgery.  Through this workshop, the Association hopes to help the children & parents well prepared for the operation in advance.

 

Cleft Lip and Palate Secondary Surgeries Preparatory Workshops

Cleft lip and palate secondary surgeries for adult patients include: (1) jaw surgery by Oral & maxillofacial surgeon to correct the patients' underbite problem resulted from insufficient growth of upper jaw; and (2) lip & nose revision surgery by plastic surgeon to correct secondary facial deformities.  The Association holds the workshop twice a year in June and December, especially in June, because most of the CLP adults would like to complete the surgeries before they go to the universities in September.  The latest one was held in mid-June.  Contents of the workshop include : i) the two different patients' pathways available in Hong Kong; ii) treatment services available in the community; iii) necessity for CLP patients with different degree of underbite to receive jaw surgery; iv) orthodontic treatment to correct mild underbite; v) revision surgeries for different kind of secondary lip and nose deformities; vi) preparation for the operation psychological & physically, vii) post-operation care and diet, viii) management of wounds; and ix) sharing by experienced patients & parents.  Through this workshop, we hope the patients & parents get themselves prepared for the surgeries.

 

2019 Social Education Activity - The Importance of Lip & Nose Reconstructive Surgeries to Patients with Cleft Anomalies in Functional & Psychosocial Aspect

The Association held the above event recently at Lecture Hall, Hong Kong Space Museum.  Contents of the activity comprised of open talks: (1) Overview of Cleft Services in Hong Kong by Dr. Joseph Chung; (2) Different kinds of lip repair methods & the long term effect by Dr. Eric Choi; (3) Different kinds of palate repair methods & the long term effect by Dr. Peter Pang; (4) Surgical correction for nasal speech of CLP children at 6-8 years old by Dr. Fiona Ng; and (5) Different kinds of secondary lip and nose deformities and the respective revision methods by Dr. George Li.  Besides, Ms Liu Kit Han, the Rehabilitation Director, Hong Kong Society for Rehabilitation, hosted the sharing section by parents & CLP patients unfolding their difficulties and feelings.  Cleft lip & palate patients not only require primary lip and palate repair at babyhood, but also secondary lip and nose reconstructive surgery functionally and aesthetically after puberty to eliminate their facial differences so as to integrate into the society.  Through this activity, we hope to increase the knowledge of CLP patients & parents about cleft plastic surgery, so that they can seek for appropriate treatment.  After completion of the secondary treatment, we shall be glad to see the patients hold their heads up with self-confidence, they may find a job without much difficulty and they can make their efforts to contribute to the society.

Links:

Apr 23, 2019

2019 Quarter 1 Report

Social Educational Activities

Lecturers of the Chinese University of Hong Kong – the Jockey Club School of Public Health and Primary Care regularly invite the Association to arrange interviews of cleft lip and palate patients for their training programmes of future healthcare workers in Hong Kong.  A number of cleft lip and palate (CLP) patients together with their parents were interviewed by twenty first-year students of Health and Primary Care Diploma Programme in two groups.  During the interviews, the students gained an in-depth understanding of cleft lip and palate treatment, the patients’ difficulties & feelings, what the patients expect the others to get along with them… Through the activities, the students’ knowledge is enhanced and they are expected to be more understanding to the patients with cleft anomalies and other chronic ill patients.

Apart from involving in school educational activities, the Association has recently published HKACKP booklet, introducing the background and objectives of the Association, what is cleft lip and palate, primary and secondary treatment for clefts, and the Association’s wide range services designed especially for cleft lip and palate patients and their families so as to help them overcome the problem caused by cleft problems.  Besides, there are three writings by parents of CLP children telling their stories and feelings.  This booklet will be sent to Antenatal Departments of Maternal and Child Health Centres,gynecologist and obstetrician, Cleft lip and Palate Treatment Centres in the territory, hoping that when the parents learn that their babies have cleft lip and palate during pregnancy they may get our help and support as soon as possible.

  

Peer Support Service at Hospitals

Having a baby with congenital cleft lip and/or palate, the parents may feel shocked, distressed and helpless.  Moreover, there are primary and secondary stages of cleft treatment which last about 20 years, the parents and patients may need continuous support along the way.  Therefore, a team of volunteers (experienced CLP parents) of the Association provide regular on-site voluntary service at the “Patient Support Station” of the United Christian Hospital.  The volunteers offer peer emotional support, share their past experience, showing photos of their children in different stages of treatment... to the parents of newborn CLP babies/children who came to the hospital for follow-up consultations.  Peer support plays a very important part in the patients’ rehabilitation and we hope to help the parent to face their children’s long term treatment positively. 

 

Community Services for the Elderly

The Association established a team of volunteers comprising of CLP children and their family members and arranged visits to different elderly homes in festival times.  During Chinese New Year, the parent-children volunteer visited an elderly home in Ngau Tau Kok.  The children played some games with the elderly and prepared a programme with singing of songs, harmonica playing and simple Chinese acrobatics performances.  The children also did small acts of kindness by presenting small gifts, chatting and taking photos with the elderly.  The parent-children volunteers found the visit very meaningful because the activity enable them to learn about caring and offering assistance to seniors.  They said that they would join activities of the like in the future and encourage their siblings to join the team to offer voluntary services and spread the spirit of community care. 

 
WARNING: Javascript is currently disabled or is not available in your browser. GlobalGiving makes extensive use of Javascript and will not function properly with Javascript disabled. Please enable Javascript and refresh this page.