Kids Bullied for Birth Defects

Cleft lip and/or palate (CLP) is the second most common congenital craniofacial defect worldwide, occurring in one in every 600 newborns. The rates are among the highest among countries with low and intermediate levels of income. However, many cleft repairs in these nations are still well behind schedule. Therefore, the psychosocial impacts of CLP are particularly likely to affect children with the condition. Due to social stigma, these children suffer additional obstacles to education, employment, and marriage. Children with CLP are particularly disadvantaged since CLP has negative impacts on social interaction and early learning. As a result, pursuing higher education and finding work as an adult becomes difficult.EBR’s Eden Teshome looks at how CLP affects children in Ethiopia.

Acleft lip is the result of a biological error in which the tissue that forms the lip does not fully fuse before birth.  Scientists still do not have a full understanding of what causes cleft lip. It is assumed that the condition arises due to genetic predisposition, environmental exposure, dietary habits, or medications used by the mother during pregnancy, among other things.

The presence of accompanying syndromes, other birth defects, or both, the child’s age and needs, and the severity of the orofacial cleft can all affect the services and treatment available to them. Cleft lip surgery typically takes place in the first few months of life, with health professionals advising the procedure be carried out during the first year.  A cleft palate should be repaired as soon as possible, ideally during the first 18 months of life. As they get older, many kids will require additional surgical treatments.

A child’s face can look better after surgery, and it may also help the youngster breathe easier, hear better, and develop their speech and language. Children who are born with orofacial clefts may require additional therapy, such as speech therapy or specialized dental or orthodontic care. Most kids with orofacial clefts fare well and have healthy lives with therapy. Still, the physical difference or scarring can lead to issues with self-esteem. The largest cleft-focused organization in the world, Smile Train, uses a sustainable and local strategy to fund operations and other critical medical services. Over 1.5 million children globally, 120,000 in Africa, and 34,500 children and adults in Ethiopia have received free cleft care for more than 20 years. More than 3,000 cases of cleft birth occur in Ethiopia each year. However, there are only 15 active surgeons and 15 partner hospitals that actively treat the condition.

Sesnie Zemichael is a senior program manager for East Africa at Smile Train. Outside of work she is also a professional makeup artist with the passion of camouflaging scars and skin disorders on people’s faces and beautifying them while restoring their dignity and confidence. She joined Smile Train in 2015 as the program manager for Ethiopia, Somalia, South Sudan, Djibouti, and Eritrea. She was able to combine her experience in development with her talent for enhancing and restoring beauty in this role. Sesine claims that helping children with cleft lip and palate so they can smile and lead healthy, productive lives brings her joy and fulfillment.

“In our society, having a cleft lip or cleft palate at birth is typically viewed as a curse,” she told EBR. “Fathers frequently desert their wives and children. The woman is blamed for having a baby like that, and society rejects them. The condition is not yet widely known in our culture.”

In addition to surgery, local partners offer speech therapy, counseling, dietary assistance, orthodontics, and other essential forms of care to make sure that children with clefts have everything they need to not just survive, but thrive.

Munaye Kebede was a mother of three; she gave birth to two children who were born with cleft lip and palate. Unfortunately, her third child  passed away shortly after birth. Munaye resides close to Arsi, which is about 110 kilometers from Assela. She was shocked to discover that Azaryel (her secondborn) had both a cleft lip and a cleft palate at birth and hid him from everyone but her close family. Although she was unaware of the illness, she had heard of the care provided at the hospital where she gave birth.

The baby was unable to ingest breast milk. He was at risk of severe malnutrition because milk went through his nose or directly into his lungs, choking him every time he tried to eat. She had to stay in Addis for three months for the surgery.

“People can be cruel and harsh at times since we live in a rural area,” Munaye shares the challenges her child has to live through. “My mother-in-law accosted me for having a child like Azaryel.”

He is still undergoing therapy at the young age of 12. Kids sometimes bully him because of the shape of his nose. Azaryel is not weak, so he simply smiles and explains to them that he fell and broke his nose.

“He occasionally comes to me in pain, so I attempt to cheer him up by reminding him that boys do not necessarily need to be as attractive as girls,” Munaye shares the pain of her child. EBR

11th Year • Dec 2022 • No. 113