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Cleft lips and palates are one of the most severe common birth defects in the world. According to the World Health Organisation it occurs in around one in 500 – 700 births. The birth prevalence rate varies across ethnic groups and geographical area.
"The highest prevalence rate has been recorded among Native Americans and Asians, but anyone can be born with a cleft lip and/or palate irrespective of gender, race or the community of which they are a part," says Scarlett Steer, Operation Smile’s Education & Media Co-ordinator.
Oral clefts
Steer explains the deformities: a cleft lip is a hole in the lip and can either be partial, unilateral or bilateral. This occurs when the maxillary and medical nasal process doesn’t fuse properly during development in the womb.
A cleft palate is a hole in the roof of the mouth that occurs when the two plates of the skull that form the roof of the mouth fail to join completely. The two often occur together, but not always.
Despite the fact that much research has been conducted and there are many theories, the exact cause of cleft lips and palates remain unknown. The cause is thought to be a combination of genetic and environmental factors.
The risks may be higher for children whose parents or siblings have a cleft lip and/or palate. Studies have linked both facial deformities with a lack of folic acid in the mother during pregnancy, but nothing is known for sure.
Because clefts cause specific visible symptoms it's easy to diagnose. It can be detected through a prenatal ultrasound. If not identified before birth it is immediately identified after birth.
How it affects development
Clefts may cause problems with feeding, hearing, speech and socialisation. Children with cleft palates find it difficult to get the necessary suction to feed and also often suffer food being taken up the nasal cavity and coming out of the nose. Special feeding equipment can help with these problems.
Children with both cleft lips and palates tend to be more susceptible to middle ear fluid collections, hearing loss and speech defects. Missing, extra, malformed or displaced teeth and cavities are also common.
Cleft children's Eustachian tubes often don't drain very well which results in a buildup of fluids, pressure builds up in the ear and often infection sets in.
Because the lips and palate are both used in pronunciation, children with clefts usually need the aid of a speech therapist both before and after corrective surgery.
Bonding with the child, socializing with family and community may also be interrupted by the unexpected appearance, unusual speech and the surgical interventions necessary.
Fixing the world one smile at a time
Operation Smile is a medical services organization that provides reconstructive surgery to poor children and young adults.
Operation Smile South Africa (OSSA) was founded in South Africa in 2006 and joined the Operation Smile Inc as its 25th partner country.
In March 2006 OSSA conducted its inaugural medical mission inn Empangeni, KwaZulu- Natal, where 98 children and young adults received free medical evaluations, and 59 patients received free reconstructive surgery.
"Over the past years, OSSA have conducted surgical missions in Empangeni, the Eastern Cape, Madagascar (one in Tamatave and one in Antsirabe) and Swaziland. To date OSSS has performed 479 life changing surgeries. This number is set to increase by 200 after OSSA's third mission to Antsirabe, Madgascar, this November," says Steer.
Steer explained that a typical OSSA medical mission is comprised of a team of credentialed medical professionals, both from South Africa and all over the world, who travel to Operation Smile partner countries to treat children during approximately a two-week period.
On a typical International Medical Mission, 300-500 children receive full medical evaluations (screening) and 100-150 children are medically treated.
"As OSSA continue to develop its volunteer base, it will increase the number of local missions it conducts each year. This style of mission is usually smaller in scale and shorter in length, but made up almost entirely of South African medical volunteers. OSSA local missions will be either within South Africa or in smaller neighbouring countries such as Swaziland or Lesotho," says Steer.
OSSA also provide post-operative care for patients who receive surgery during a medical mission. The post-operative programs are conducted one week, six months and 12 months after the patient's original date of surgery.
Patients will be given the dates and locations of these post-operative medical examinations. The post operative examination determines the next step of the patient's medical treatment plan. The patient’s photograph will be taken for medical documentation.
Patients requiring additional surgery will be scheduled for surgery during upcoming medical missions.
Getting a smile fixed
"Decisions about who will receive surgery during an Operation Smile program are made using a priority system developed to maximize the expected benefit from surgery with consideration to safety and the allocation of time and resources. There are five priorities," explains Steer.
- Untreated cleft patients (usually in patients older than 6 months, although some greater than 3 months of age can be helped provided all team leaders agree)
- Untreated cleft palate patients younger than 6 years (usually older than 2 years of age but can be considered from 9 months if all team leaders agree)
- Untreated cleft palate patients above 6 years of age
- Revisions and other secondary procedures with the highest priority within this group going to patients previously treated by Operation Smile
- Patients with other diagnosis e.g. tumours, burns etc.
If the patient is an Operation Smile patient and returns with a complication, he/she is given advanced priority status. No one need have medical aid to be considered.
"During one of our surgical missions, Operation Smile aims to help as many people as they possibly can, but safety and quality always comes before quantity. There is no specific limit to the amount of surgeries we perform, but we would never put anyone at risk to raise our numbers," says Steer.
About the surgery
Surgery is usually performed during the first to repair cleft lip, and between 9 and 14 months to repair the cleft palate. As both types of surgery are performed under general anesthesia, the health and weight of the baby is very important. A malnourished, very underweight baby needs to be made healthy before undergoing surgery.
"There is no age limit, our patients range from a few months old to mid-sixties. The same precautions have to be taken when considering surgery for the very elderly," says Steer.
A child with cleft lip typically needs just one surgery, especially if the children or adult has partial or unilateral cleft lip, although there are always exceptions, says Steer.
Bilateral cleft lips can require two surgeries. Cleft palate surgery involves drawing tissue from either side of the mouth to rebuild the palate. The initial surgery is intended to create a functional palate, reduce the chances that fluid will develop in the middle ears, and help the teeth and facial bones develop properly. The functional palate will also help speech development and feeding abilities.
The need for more operations depends on the skill of the surgeon as well as the severity of the cleft, its shape, and the thickness of available tissue that can be used to create the palate.
"Some children require more surgeries to help improve their speech. Additional surgeries may also improve the appearance of the lip and nose, close openings between the mouth and nose, help breathing, and stabilize and realign the jaw. Later surgeries are usually scheduled at least six months apart to allow time to heal and reduce the chances of serious scarring," says Steer.
Getting involved
"You don't have to have medical training to get involved with OSSA. OSSA are hugely dependent on their team of both medical and non-medical volunteers. Volunteers are also crucial in assisting with office administration, fundraising and creating awareness. OSSA has established chapters across the country where volunteers, supporters and everyone interested in making a contribution towards the organization, get the opportunity to meet with each other and embark on different projects in support of Operation Smile," says Steer.
For medical and non-medical volunteer programs, as well as details on how to donate, please contact OSSA's Programs Coordinator, Ananda Nel on (021) 481 9165 or anel@operationsmile.org
Where can parents get help?
If you have a child, or know of someone who needs free surgery for a cleft lip or cleft palate you can send OSSA the following information:
- your name and contact details
- the name and age of the patient
- contact details of the patient
- the medical history of the patient
- photo's of the patient (if possible)
This can be emailed to info@cleft.co.za or anel@operationsmile.org or fax it to (021) 481 9133 or call toll-free, 080 021 2026.
The following clinics for cleft lip and cleft patients exist:
Gauteng
- Johannesburg Hospital
- Medunsa Oral and Dental Health Care
- Netcare Parklane Clinic
- University of Pretoria
- Pretoria Academic Hospital Oral and Dental Clinic
Western Province
- Red Cross Children's Hospital
- Tygerberg Hospital
- Inkosi Albert Luthuli Hospital
- Polokwane Hospital
- Frere Hospital
- Port Elizabeth Provincial Hospital
- Department of Plastic Surgery, Universitas Academic Hospital
KwaZulu Natal
Limpopo
Eastern Cape
Free State Province
All potential patients are requested to please register with OSSA.
(Leandra Engelbrecht, Health24)
