Give HK Cleft Lip and Palate Families a Smile

Antenatal feeding workshop

Due to orofacial cleft, an affected baby has a gap in the upper lip and an opening inside the mouth into the nose.  Thus, he may easily choke and swallow a large amount of air while feeding, which may cause vomiting more frequently than other babies. Besides, he may lack suction and has trouble feeding.  All these problems make both the baby as well as the parent feel frustrated. We understand that new parents are concerned about how to feed their new born cleft lip and palate babies. They may feel helpless and depressed.

Antenatal Feeding Workshop is designed for parents of newborn cleft lip and palate babies.  Experienced parent volunteers bring their own 3-month-old toddlers to demonstrate the way of feeding a cleft baby. The parent volunteers will also give guidance on feeding methods, tips, and precautions of vomiting.  All pregnant mothers are invited to learn and practice feeding at our centre so as to master the skills.

At the same time, our association regularly organizes Educational Groups for new parents to provide some comprehensive information about care-taking, course of treatment, treatment services. It aims to support parents and their affected babies to receive the best care and get the most appropriate treatment, enabling better rehabilitation of the patients.  The New Parents’ Group will be organized four times a year, with three sessions on each course. The contents of the three-session activities cover cleft care, treatment and development of the affected from newborn period to childhood.

Sharing Session for parents with bilateral cleft lip & palate babies

Babies with bilateral cleft lip and palate are rare and more complicated than the unilateral cleft cases.  Parents will face many challenges and difficulties. In order to meet the needs of bilateral cleft lip and palate patients in different developmental stages, the association holds various pre-operation/treatment preparation workshops regularly in which information about surgery/treatments will be provided for bilateral cleft lip and palate babies. Experienced parents whose children have completed the surgery/treatment will be invited to share their experiences with new parents. .

Thus, the patients who will soon undergo the surgery/treatment can have more understanding of the procedures and can do better preparation beforehand.   Topics of preparatory workshops include: Primary Treatment (Surgical Repair for Cleft Lip and Palate) and Secondary Treatment (Orthognathic Surgery and Combined Lip and Nose Reconstructive Surgery for Adults with Clefts).

Postoperative care is more essential. Parent volunteers also share tips on how to feed, clean and take care the delicate surgical wounds of their babies. The sharing session for parents with bilateral cleft lip and palate babies is not only informative support but also psychological support by trained senior parent volunteers. 

Community Education

Our association actively participates in Life Education and visits all primary and secondary schools in Hong Kong. During the talk, volunteers introduced our association’s background, operation and services on how to support cleft lip and palate patients and their families. The patients' parents or the patients themselves share their difficulties and experiences. It is a very good opportunity to let teachers and students have a better understanding of    cleft anomalies, the life stories of the patients, and parents’ feelings. Students learn about the needs of people in our community to develop their empathy and compassion for everyone in our society. It aims to promote harmony and embrace equality and inclusion in the campus and society. 

Cleft lip and palate students experience bullying in primary and secondary schools from time to time that cannot be ignored. Our association urges the public to stop discriminating and judge the affected students’ physical appearance. Mimic their pronunciation and tease them. They deserve a right to be treated equally like everyone else. We would love to deliver a message to everyone that we should cherish all around. This is the greatest happiness in life.

On the other hand, we also conducted a survey after the Q&A session. Every student will receive a questionnaire to express their opinion. It is important to get their valuable feedback. Our association uses this useful data for statistics, further development, and future planning.