NOTICE | Kholofelo Mphahlele: ‘Ghosts’ Among Us: Split Child Neglect

In some rural areas, a baby born with a cleft is often considered a curse; they may be abandoned by their fathers, and even their mothers write Kholofelo Mphahlélé.

They live next door, but you can’t see them. They live in our homes, but no one hears them. Indeed, you may think of them as invisible, but they are present in our homes, coiled in humiliation and fear.

July was National Cleft and Craniofacial Fissures Awareness and Prevention Month. Craniofacial fissures and conditions affect thousands of infants, children, adolescents and adults worldwide each year.

Some are born with birth defects such as cleft lip and palate, others with more complex and life-threatening craniofacial conditions. Some are burned; others are injured in accidents and animal attacks or diagnosed with various diseases of the mouth/head/neck and skin.

What are craniofacial defects?

Craniofacial anomalies 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 is very complex. Some defects can occur during early development in the womb, which can lead to empty spaces on the face. This is called facial clefts. The most common facial clefts that can occur are cleft lip, also known as cleft lip and cleft 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 space in the skin of the upper lip. While a cleft palate is a cleft or opening in the roof of the mouth. In many cases, the cause of cleft lip or palate is unknown. However, clefts are thought to occur due to a combination of genetic and environmental factors.

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lip slit with or without palate (CLP) is the most common congenital craniofacial anomaly, with an estimated worldwide prevalence of 1 in 700 live births.

Babies Are Supposed To Be “Perfect” But Sometimes They’re Notbase

When a child is born with a cleft lip, palate, or both, most parents immediately wonder how severe the cleft is. They may have discovered it during pregnancy or at birth, in both cases it is said to be difficult.

With the right lunge team in place, feeding can be explained and any challenges that will be encountered will be explained to the parent(s). The craniofacial team understands emotions and can help reassure the parent(s).

READ | “It’s Not Witchcraft” – Seitebogo Peta Explains Why She Educates Parents About Cleft Palate

A lack of education and awareness around the cleft makes life more difficult for children and families. Many parents are shocked and surprised when their babies are born with clefts because prenatal screening is rare. Especially in rural areas, medical staff have limited advice or guidance for parents, who are unsure how to help their infants.

Stigma, shame and trauma

Social stigma is context dependent and based on the cultural perception of the cleft. Parental blame or the perception that the cleft stems from a punitive supernatural force negatively influences the perception of the child with a cleft lip and palate.

I asked a cleft child who survived numerous cleft repair surgeries what it was like to be a cleft warrior. Here is his response:

To be an African child born with facial and oral deformities is like living a life under a death sentence. An unknown number of children born with split lips and cleft palate are often denied the right to live with their parents and families, who sometimes kill them all in the name of superstitious beliefs that these children come with curses and bad luck for their families. I’m lucky to have been loved, I’m lucky to be alive.

More serious consequences are far too common. In some rural areas, a baby born with a cleft is often considered a curse; they can be abandoned by their fathers, and even their mothers. Some grandparents refuse to give the child the surname. Even with community support, the financial and emotional strain of providing specialized care limits a family’s ability to be contributing members of their society.

How the cleft affects life

Living with an untreated cleft can have a profound and lasting impact on a child and their family. Studies have shown that living with any facial difference can negatively impact mental health and overall quality of life. In addition, an untreated cleft lip/palate can also have serious consequences on the physical health and development of the child.

The World Health Organization recognizes that living with an untreated congenital disability, such as cleft, puts children at increased risk of malnutrition, poor health and poverty.

Cleft lip and palate challenges begin at birth and can last a lifetime:

  • Infants cannot feed themselves properly and may become malnourished. They are also at greater risk of respiratory infections. Infants with craniofacial diseases will need to eat differently than other children. Since different areas of the face, such as the oral and nasal cavities, may not be separated, special tools may be needed to keep food out of areas where it shouldn’t go.
  • Children are often bullied or teased, and suffer negative effects on their physical and mental health, including anxiety, depression and low self-esteem.
  • Children and adults may have difficulty speaking clearly, which prevents them from integrating into their society, getting an education and finding a job. It is important to use normal vocal stimulation with split babies, encouraging cooing and babbling. The child’s speech production will be different from normal, and it may sound hyper nasal. Cleft children should be encouraged to play with sounds as all children do. Orally produced sounds are much preferred over glottal or trachea-based sounds. Glottal stops (think airy sounds between the words “uh-oh”) should be ignored and not reinforced as communicative because they will be very difficult to change as the child grows.
  • Having a child with a cleft can lead to ostracism from an entire family, jeopardizing their support network, mental health, and financial stability.

The medical fraternity

The Red Cross War Memorial Children’s Hospital: Cleft Lip and Palate Clinic in the Western Cape is the only one of its kind in South Africa to meet World Health Organization requirements for the services it provides. Services include emotional support and professional counselling, neonatal nursing, surgery, orthodontic/orthopedic treatment, speech therapy, ear, nose and throat care, clinical genetics, dental care and a neonatal register.

The Ministry of Health should provide more clinics, such as the Red Cross War Memorial Children’s Hospital, so that children born with cleft lip and palate can be assisted from birth.

READ | How two little SAs with a cleft palate went from avoiding their communities to earning their trust back

Doctors and nurses need to be supported and better trained on the craniofacial defect.

Clinical preparation and experience are essential to quality care for babies born with a cleft. The child needs to be seen immediately by several specialists, who are familiar with these facial malformations.

The more specialized the team, the fewer the complications. Early treatment with an interdisciplinary team often leads to the best development of children with these conditions. Correcting physical abnormalities before babies begin to rely on these parts of their body — for communication or other purposes — can prevent babies from learning irregular behaviors to compensate. Early intervention can also prevent developmental delays.

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Organizations such as the Smile Foundation should be supported in their work to transform the lives of children affected by facial anomalies and severe burns through the best possible surgical and psychological care.

Finding a community of people who share your experiences can help you with emotional support, share advice, and solve problems together. For children in particular, it can build self-esteem and a sense of connection to meeting other people like them.

One simple fact makes all the consequences of an untreated cleft even more devastating: children born with a cleft don’t have to suffer because help is available.

– Kholofelo Mphahlele is a Section 27 paralegal.

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Christine E. Phillips