The ongoing psychological, functional, and aesthetic challenges experienced by people with cleft lip and palate underscore the need for an individualized, lifelong, and multidisciplinary approach to managing the condition, argues Kholofelo Mphahlele.
Most people desire to have a good smile, a winning smile but in the case of some people with cleft lip and palate (CLP), smiling happens without showing teeth because the upper jaw just does not move.
The prevalence of CLP in South Africa is estimated at 0.3/1 000 live births. Rates differ dramatically between provinces, ranging from 0.1/1 000 in the Eastern and Northern Cape to 1.2/1 000 in the Free State. Every three minutes a child with a cleft lip or cleft palate is born somewhere in the world.
Approximately 9 out of 10 people in low-income countries do not have access to basic surgical care. That leaves many children who do not receive reconstructive surgery and accordingly are at greater risk of avoidable hearing loss and difficulty breathing, speaking, eating, and drinking. These children are subsequently also at greater risk of malnutrition and other medical and psychological challenges.
And the harsh reality is that these implications can be lifelong, often also leaving people to struggle with stigma and discrimination.
"Looking 'different' in a society obsessed with image can be exceedingly difficult," says 29-year-old *Kgoshi (not his real name) who was born with a right-side unilateral CLP. "I must mentally prepare every day, asking myself, who is going to stare at me, who is going to make a comment?" (Kgoshi approached SECTION27, where I work, for assistance in accessing surgery.)
What are craniofacial defects?
Craniofacial defects are conditions present at birth that affect the structure and function of a baby's head and face. The development of the face and facial bones are very intricate. Some defects can occur during early development in the utero, which may result in areas of the face being left with gaps. This is called facial clefts. The most common facial clefts that can occur are clefts of the lip, also known as, harelip and clefts of the palate.
A cleft lip is a physical split or separation of the two sides of the upper lip and appears as a narrow opening or gap in the skin of the upper lip. While a cleft palate is a split or opening in the roof of the mouth. In many cases, the cause of cleft lip or cleft palate is unknown. However, it is believed that clefts occur due to a combination of genetic and environmental factors.
Can it be fixed? Yes, CLP can be repaired. The goals of treatment for cleft lip and cleft palate are to improve the child's ability to eat, speak and hear normally and to achieve a normal facial appearance.
Care for children with cleft lip and cleft palate often involves a team of doctors and experts, including but not limited to surgeons who specialise in cleft repair, such as plastic surgeons, oral surgeons, ear, nose, and throat doctors and paediatricians.
Early treatment with an interdisciplinary team often leads to the best development for children with these conditions.
Surgeries are usually done in this order: cleft lip repair at 3 to 6 months, cleft palate repair by 12 months or earlier, and follow-up surgeries from age 2 through the late teens.
In adulthood, surgery to reconstruct appearance may be done to improve the appearance of the mouth, lip, and nose.
After countless repair surgeries, a surgeon asked Kgoshi about laser treatment to reduce the scar on his lips, but he refuses to hide the scar and continues to smile albeit without showing his teeth.
"You must understand why you get the looks and comments. If you have not seen something before, it is normal to fear it," he says.
Shame and stigma
In some rural areas though, children with cleft lip and/or palate often face social rejection and are sometimes viewed as a curse, leading to disadvantages in education, employment, marriage, and community life - all of which are worsened by limited access to care.
Blaming the parents or believing that a cleft is caused by something like witchcraft contributes to the child feeling abnormal and should therefore be rejected by society.
What is the way forward?
A lack of education and awareness around cleft makes the lives of impacted children and families in South Africa more difficult.
Limited availability of appropriate healthcare services also does not help. The Red Cross War Memorial Children's Hospital's Cleft Lip and Palate Clinic in the Western Cape is the only one of its kind in South Africa offering a comprehensive range of specialist paediatric services to children. Their services include emotional support and professional advice, neonatal nursing, surgery, orthodontic/orthopaedic treatment, speech and language therapy, ear, nose and throat care, clinical genetics, dental care, and a neonatal register.
There is an urgent need for provincial departments of health to support more such clinics.
In the meantime, there have been several initiatives to help meet the need. For example, from 24 to 28 July this year, the Nelson Mandela Children's Hospital in Johannesburg and Operation Smile - an international medical NGO with a network of medical volunteers from more than 80 countries - provided life-changing surgery for 40 children affected by cleft lip and cleft palate.
Organisations such as the Blissful Cleft Foundation and Operation Smile need strong backing from our political leaders as they work to transform the lives of children affected by facial abnormalities through the best possible surgical and psychological care.
Sign up for free AllAfrica Newsletters
Get the latest in African news delivered straight to your inbox
But there are also more basic changes needed in day-to-day healthcare services. For example, routine prenatal screening needs to be provided so parents are aware of the cleft prior to birth.
Medical staff, especially those working in rural areas, need training on how to care for people with craniofacial defects and must be able to educate people about it. For instance, dentists should be trained in oral hygiene treatment and then teach caregivers how to properly care for the teeth of children with clefts.
For children, meeting others with similar conditions can especially boost their self-esteem and create a sense of connection. This is where parents can come together to start community groups where people can share their experiences with cleft conditions, providing emotional support, practical advice, problem-solving and advocacy. As with adherence clubs for HIV treatment, clinics can play a role in helping get such support groups off the ground.
The more children born with CLP are seen in the world and not hidden because they are seen as taboo, the more normal it will become.
*Kholofelo Mphahlele is with SECTION 27.
Note: Spotlight is published by SECTION27 but is editorially independent. The views expressed in this opinion piece are not necessarily shared by the Spotlight editors. Spotlight is committed to publishing a variety of views and facilitating informed discussion that deepens public understanding of health issues.
