Give HK Cleft Lip and Palate Families a Smile

by Hong Kong Association for Cleft Lip and Palate
Give HK Cleft Lip and Palate Families a Smile
Give HK Cleft Lip and Palate Families a Smile
Give HK Cleft Lip and Palate Families a Smile
Give HK Cleft Lip and Palate Families a Smile
Give HK Cleft Lip and Palate Families a Smile
Give HK Cleft Lip and Palate Families a Smile
Give HK Cleft Lip and Palate Families a Smile
Give HK Cleft Lip and Palate Families a Smile
Give HK Cleft Lip and Palate Families a Smile
Give HK Cleft Lip and Palate Families a Smile
Give HK Cleft Lip and Palate Families a Smile
Give HK Cleft Lip and Palate Families a Smile
Give HK Cleft Lip and Palate Families a Smile
Give HK Cleft Lip and Palate Families a Smile
Give HK Cleft Lip and Palate Families a Smile
Give HK Cleft Lip and Palate Families a Smile
Give HK Cleft Lip and Palate Families a Smile
Give HK Cleft Lip and Palate Families a Smile
Give HK Cleft Lip and Palate Families a Smile
Give HK Cleft Lip and Palate Families a Smile
Give HK Cleft Lip and Palate Families a Smile
Give HK Cleft Lip and Palate Families a Smile
Give HK Cleft Lip and Palate Families a Smile
Give HK Cleft Lip and Palate Families a Smile
Give HK Cleft Lip and Palate Families a Smile
Give HK Cleft Lip and Palate Families a Smile
Donation of COVID protection materials
Donation of COVID protection materials

Distribution of COVID Prevention Materials

Standing shoulder to shoulder with the members to fight against the epidemic, HKACLP gathers COVID prevention materials from various donors and distributes them to the families of limited means with a hope that could relieve their needs and help to keep them away from the threat of the coronavirus. 

 

Prenatal Feeding Training Workshop

Under the situation of COVID-19, public hospitals have implemented special infection control measures, and thus the discharge of newborn cleft lip and palate babies who have feeding problems are much delayed inevitably.  It is because after birth the babies will be kept in nursery for 3-4 weeks to make sure that the mothers know how to feed them.  During that period, the mothers are allowed to visit their babies and to learn feeding from the speech therapists/occupational therapists once a week. 

In view of this, HKACLP arranges for the pregnant mother ‘Prenatal Feeding Training Workshop’, in which our experienced parents will give pregnant mothers the guidance and practice on feeding cleft lip and palate babies.  We hope that through this Prenatal Feeding Training Workshop the pregnant mothers can get hold the feeding skills before childbirth so as to avoid prolong hospitalization of their new born affected babies.

  

Oral Myofunctional Therapy On-line Workshop

The oral muscles of cleft lip and palate children, such as facial muscles, lips and tongue, will develop as they grow up and get more chewing experience.  During eating, the children's jawbone, lips and tongue movements must co-ordinate in order to chew food effectively.  Moreover, as young children learn to speak, the flexibility and coordination of the oral muscles is also very important.  Oral muscle dysfunction not only affects chewing, but also severely affects the speech, resulting in mispronunciation.  In the most serious cases, some children cannot even close the mouth due to failure to control the oral muscle that may result in crowded and irregular arrangement of teeth, affecting the growth of jaw bone and the appearance.

Upper jaw of a cleft lip and palate child will grow slower than the lower jaw because surgical repair for cleft palate may hurt part of the palatal muscle and thus the development will be affected.  In addition, the scar tissue on the palate lacks elasticity that forms a pulling force that hinders the growth of the upper jawbone, resulting in underbite and dented midface.  Therefore, correct oral muscle function exercise is very important for their oral and facial development! Through multiple studies by foreign experts, it has been proved that if children with proper oral muscle exercise can help their jaw bones grow, they can improve their occlusion, chewing, speech, communications and even social interaction.

In view of this, HKACLP holds regular ‘Oral Myofunctional Therapy Workshops’  for different age groups of cleft lip and palate children.  During COVID pandemic, the workshop will be presented in the form of on-line lecture.

Prenatal Feeding Training Workshop 1
Prenatal Feeding Training Workshop 1
Prenatal Feeding Training Workshop 2
Prenatal Feeding Training Workshop 2

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Infection Prevention for Resident Speech Therapy
Infection Prevention for Resident Speech Therapy

Infection Prevention Measures for Resident Speech Therapy Service 

To prevent Coronavirus, our resident speech therapy had been stopped for 6 months and then re-started in the format of on-line sessions.  As local new cases came down steadily since August, HKACLP resumes resident speech therapy service for cleft lip and palate children by taking infection prevention measures such as installation of separation screen, application of masks, keeping hand hygiene & physical distancing, frequent toys and equipment cleaning so as to keep safe both the therapist and the students.

 

 

Charity Cleft Lip & Palate Treatment Project

Secondary Cleft Lip and Palate Deformities 

After primary surgical repair of cleft lip and cleft palate, a CLP patient may present as growing up with secondary deformities such as collapsed and asymmetric nostrils, insufficient and asymmetric upper lip etc. Besides, due to cleft palate, a majority of patients may have their mid face and upper jaw underdeveloped, resulting in underbite, plus the lower lip tends to evert forward which results in undesirable appearance, low self-esteem, speech problems, bite problems etc.  Therefore, Secondary Treatments are very important to CLP patients.

 

Charity Cleft Lip and Palate Treatment Project

Since the closure of the Plastic & Reconstructive Department of Princess Margaret Hospital in the year 2006 due to budget cut of the authority concerned, HKACLP has been receiving quite a number of ‘Seeking for Help’ cases, including those patients waiting too long for treatments, patients in mid-twenties but not rendered any secondary treatment due to disconnected Primary and Secondary Treatment at certain public hospitals, adult patients who missed their treatment in due course… Among these patients, most of them came from families of fairly limited means.

In view of these, HKACLP sought help from the Evangel Hospital, a non-profit making community hospital.  Thus the ‘Charity Treatment Project for Cleft Lip and Palate Patients’ was launched in the year 2012 jointly by “Hong Kong Multidisciplinary & Holistic Centre for Cleft Lip and Palate” of Evangel Hospital and HKACLP.  The project aims to provide early treatments to the adult patients to help correct their secondary cleft problems and facial difference so that they will not miss their golden age of life.  Eligible patients may receive orthodontic treatment, orthognathic surgery, lip & nose reconstructive surgery and ENT treatment at half of the fees.

 

Let Love Continue - Cleft Lip and Palate Treatment Fund 

The Fund is established in the same year as the Charity Treatment Project was launched.  By then, a Mrs. Yiu’s baby boy born with Pierre Robin Sequence who had his palate repaired twice at a public hospital but completely split apart, so Mrs. Yiu turned to HKACLP for help.  The baby was thus accepted for joining the Charity Treatment Project.  He had his palate repaired successfully by the surgeons of this Charity Treatment Project.  Mrs. Yiu, apart from extending her deepest gratitude to the team, donated the 50% discounted fee amounting $40,000 to HKACLP as a token of thanks on 5 November 2012.  Thus Let Love Continue - Cleft Lip and Palate Treatment Fund was established to offer subsidy (up to 25% of the treatment expenses) to the patients from CSSA and grass-roots families who are eligible for joining the Charity Treatment Project.

Patient after lip & nose reconstructive surgery
Patient after lip & nose reconstructive surgery

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Donation of Protection Masks & Sanitizing Products

Due to Coronavirus Pandemic, HKACLP temporarily closed its service centre and stopped almost all services since February 2020.  As local transmission numbers have come down since May 2020, Government’s tightened measures gradually relaxes and thus the association’s operation resumes to normal.

In the initial stage of Coronavirus outbreak, there was also severe shortage of facial mask and sanitizing products, causing the prices to rise to an unaffordable level for many low-income families.  In lack of hygienic supplies, some of our members have to use a mask repeatedly for days and their safety is at risk. 

Thanks to Social Welfare Department, Jockey Club Charity Trust, Alliance of Patients’ Organizations, some Caring Organizations and Companies…for donating some surgical masks and household cleaners to the Association. These antiviral products are subsequently distributed to our members and volunteers to relieve their urgent needs.  On behalf of the beneficiaries, we would like to express our gratitude to all donors for their care and concern to the needy!

 

Whatsapp & Telephone Contacts

In the past few months when HKACLP staff members and volunteers were confined to work from home, our support to the families with cleft lip and palate patients has never stopped.  Through Whatsapp and telephone conversations, we keep contact with the parents and patients for sharing experiences and coping strategies, helping them to reduce their distress and anxiety.

  

Construction of New Website

HKACLP is a patient organisation that does not have regular subvention of any kinds.  Though the old website was quite outdated, the association has been deferring the plan of constructing new website once again due to limited resources. Grateful that a caring company offered help to us without charging a fee.  Therefore, when HKACLP’s services came to a halt during the global crisis, HKACLP took the time to establish its new website.

 

The new website is launched just in time to promote HKACLP’s Gold Flag Donation for 4 July Flag Day and there are some new payment methods to facilitate the people's donations.  Now, with the improved SEO approach, it is more easily for the parents & patients to find HKACLP on internet, and they can make real-time communications with our staff through live chat function.  Moreover, it is more convenient for the website visitors to share HKACLP's information & activities to their families & friends through the social media buttons on the web page.

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Enquiry Hotline Service
Enquiry Hotline Service

One-stop Services for New Parents 

Cleft lip and palate is one of the most common congenital anomalies that can be corrected through surgeries.  However, if the parents are ignorant about the deformity, they may not give appropriate care and due treatments to their cleft babies.  Yet, after the parents has got immediate assistance and equipped with more knowledge, they will find that looking after cleft babies are not that difficult jobs. We provide one-stop services for new parents as follows:

 

Enquiry Hotline

When a couple learns that their baby has cleft lip and palate during pregnancy, they may instantly felt shocked and worried.  They needs patient organization’s help and peer support as early as possible.  Thus we provide Enquiry Hotline service for them so that they can make easy telephone contacts with us.  The service is provided by our staff and experienced volunteers who are dedicated to help the couples by giving them emotional support, basic cleft information and sharing of experience.  Having got the immediate assistance from our association, the parents are less stressed and they will more likely accept their cleft babies.

 

Along the Way with You – Support Service for Parents & Patients

This service is providing by our staff and trained veteran parent volunteers for new parents on ‘one-family-one-volunteer’ basis.  The modes of our services include consultation interviews, hospital visits, home visits, telephone follow-ups, whatsapp communications, group gatherings and district meetings.  Through this project we help new parents all along the way of their children’s course of treatment by answering their queries on caretaking and treatment on different stage of growth.  With our staunch support, the new parents may have more confidence to take good care of their cleft lip and palate babies.

  

Provision of Cleft Baby’s Bottles

Due to lack of suction, an infant with a cleft may have trouble feeding.  Thus, we provide special designed nursing bottles to help the parents feed their affected babies. With these specialized equipments, the baby may take and swallow the milk more easily.  There are two types of nursing bottles, namely 1) P-type nipple with squeeze bottle; and 2) soft tube with squeeze bottle.  The former is for feeding cleft baby before cleft lip & palate repair, whereas the latter is for post-operation feeding of three weeks.

  

New Born Babies Feeding Workshop

A baby with cleft lip and palate is difficulty to feed.  It is because he cannot suck the milk directly from the bottle, so the parent has to squeeze the bottle to help the baby take the milk.  Besides, the baby may easily choke which makes him feel uncomfortable and parent feel scared.  Moreover, the baby may swallow a large amount of air during feeding that consequently results in vomiting.  There are some feeding techniques that the parents should learn before they can feed their babies efficiently. This service is designed for parents of newborn cleft babies.  The parents can bring along their babies to learn and practise feeding. Through our experienced volunteers’ guidance, the new parents may quickly master the feeding skills.

Along the Way with You Support Service
Along the Way with You Support Service
Provision of Cleft Baby Bottles
Provision of Cleft Baby Bottles
Newborn Babies Feeding Workshop
Newborn Babies Feeding Workshop

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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
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Organization Information

Hong Kong Association for Cleft Lip and Palate

Location: NA - China-Hong Kong SAR
Website:
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Project Leader:
Hong Kong Association for Cleft Lip and Palate
NA, NA China-Hong Kong SAR
$4,086 raised of $10,000 goal
 
43 donations
$5,914 to go
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