Creating awareness for the cleft lip and palate community

Twelve children with CLP were present at the launch of Malaysia's first Cleft Awareness Month, including this young girl who cuts the cake made specially for the occasion. Photo: CLAPAM

October marks the first ever Cleft Awareness Month in Malaysia.

Cleft lip and palate (CLP), collectively referred to as orofacial cleft, is one of the most common congenital conditions occurring in Malaysia. Its reported occurrence is one in every 700 live births. Approximately 800-1,000 CLP babies are born in the country every year (the number of live births is 487,957 in 2019, Department of Statistics Malaysia).

According to the Cleft Lip & Palate Association Malaysia (CLAPAM), such births continue to occur because the cause of CLP hasn’t been determined (and hence it is difficult to prevent), although some have believed that genetics and what the mother goes through during pregnancy may be contributing factors.

CLP can be managed through what is known as Cleft Protocol, and facilities and expertise are available at government hospitals under the Health Ministry and institutions of higher learning.

Malaysia's first Cleft Awareness Month was launched at University of Malaya Dentistry Faculty. Photo: CLAPAM

The inaugural Cleft Awareness Month was launched earlier this month at University of Malaya’s Faculty of Dentistry.

“Although CLP is a common birth condition, the knowledge and understanding among the general public and even the CLP community is relatively low. As such, it is important for a Cleft Awareness Month in Malaysia to create more awareness,” says CLAPAM president Zainal Ahmad.

“In the United Kingdom, through the Cleft and Palate Association, there is one week in May chosen as Cleft Awareness Week, while in the United States, the local NGOs have selected July to be National Cleft and Craniofacial Awareness and Prevention Month. However, since there isn’t an international day, week or month for CLP awareness in Malaysia, October has been selected as Malaysia’s Cleft Awareness Month,” says Zainal.

“This is because it coincides with World Smile Day which is on Oct 1 and CLAPAM was also officially registered with the Registrar of Societies Malaysia in October,” he says.

The objectives of Cleft Awareness Month include raising awareness among the general public as well as the CLP community, dispelling myths and providing accurate information about the condition, as well as educating individuals with CLP and their families about the Cleft Protocol.

CLP isn’t a disease but a treatable condition, and it isn’t a disability but can be managed through the Cleft Protocol, says Zainal Ahmad. Photo: CLAPAM

“Creating awareness among the general public so that they will have a better understanding of CLP – that it isn’t a disease but a treatable condition, and that it isn’t a disability but can be managed through the Cleft Protocol – is important,” says Zainal.

“This is to ensure a better understanding in society of persons with CLP. Someone with CLP can lead as fulfilling a life and contribute as much to their community as any other person who doesn’t have CLP,” he says.

“Knowledge of the condition among parents of children with CLP is also relatively low. Some even have incorrect information or inappropriate beliefs about their children’s condition. It is hoped that with the Cleft Awareness Month, parents can get accurate information to help them make the right decisions for their CLP children,” he adds.

One of the families attending the Combined Cleft Clinic at University of Malaya Medical Centre during the Cleft Awareness Month launch. Photo: CLAPAM

The month is also a time to “spread some positivity during the dark times of the pandemic and celebrate the CLP community”.

“It’s important to give individuals with CLP the dignity to live their lives like any other human being. With the theme ‘Embracing Differences’, the Cleft Awareness Month is a time where those with CLP can be recognised and acknowledged by the community,” he says. “It’s a reminder to encourage everyone to accept those who are different from themselves – including those with CLP – that that they too deserve to be respected and understood, instead of being ostracised, ridiculed or laughed at.”

The theme colour of the Cleft Awareness Month is purple to correspond with the CLAPAM logo, and Malaysians are encouraged to wear a purple ribbon in support of the cause.

Parents (centre) with their children participating in the Charity Cleft Surgery Programme, pictured with surgeons and CLAPAM secretary. Photo: CLAPAM

The official Bahasa Melayu term klef has also been announced, replacing the previous word sumbing which carries negative connotations. With this, the terms klef, klef bibir (cleft lip) and klef lelangit (cleft palate) are now accepted as the official Bahasa Melayu terminology for CLP.

The month also marks the launch of the new CLAPAM website and the soft launch of the Klef-1 Dalam 700 book.

The month-long awareness campaign will involve other registered CLP associations such as the Cleft Lip and Palate Association Sabah (CLAPAS) and Cleft Lip and Palate Help Association Sarawak (CLAPHAS), as well as other affiliated organisations like the Malaysian Association of Speech and Hearing; Malaysian Association of Plastic, Aesthetic and Craniomaxillofacial Surgeons; Malaysian Society of Plastic and Reconstructive Surgeons; Malaysian Dental Association; Malaysian Association of Oral and Maxillofacial Surgeons; Malaysian Association of Orthodontists; Malaysian Association of Maternal and Neonatal Health; and The Malaysian Pediatric Association.

The Master of Ceremonies for the launch of Malaysia's first ever Cleft Awareness Month was Umar, a 16-year-old with CLP. Photo: CLAPAM

Appropriately, the Master of Ceremonies for the launch of the Cleft Awareness Month was a 16-year-old with CLP. He was selected because of his determination and confidence in going through his Cleft Protocol. There were also 12 children with CLP who were present to attend the Combined Cleft Clinic.

CLAPAM was open during the MCO and continues to serve the community throughout the pandemic.

For more info, visit CLAPAM's Website or Facebook