Stigma and isolation affect many Nigerians with cleft lip disorder

ABUJA, Nigeria —  Three months ago, Aminat Ishaq was born with a cleft lip and palate (CLP). Since then, people point at her mother, Balikisu Ishaq, wherever she goes. 

The CLP disfigured Aminat’s one eye and nostril. Her mother said she finds it difficult to eat. Many people, mostly neighbours, use the baby's name and condition to identify her house or the neighbourhood she lives in Idu, a suburb in Abuja. 

“People talk about the child a lot and many are saying the baby will not survive,” she timidly told TRT World as she rearranges the blanket that covers little Ishaq. 

“I always feel ashamed when people come to see the baby,” she said reluctantly. “I feel it’s God who gave me the child.”  

Cleft lip babies need surgery. After the initial surgery, there is a secondary surgery, followed by speech therapy to train patients on how to speak properly. An orthodontic treatment, which is the rearrangement of the teeth, and orthognathic surgery to correct the bone nonalignment of the upper and lower jaws, are also required. Only children who are three months and above can undergo a cleft operation. 

Ishaq is due for a surgery but her parents, who live in a one room house, are too poor to afford the surgery. The mother said Ishaq needs $11,000 (4 million Nigerian Niara) to undergo the first round of the surgical procedure.   

Each year, more than 200,000 children are born with cleft lip and palate in the world. One in every 500-700 children is born with it globally, according to data from the World Health Organization (WHO). At least 19,000 children are born with the condition every year in Africa, 12,000 of whom are in West Africa and 6,000 in Nigeria. 

Living with stigma and inequality

Cleft patients often live with stigma, which affects their families as well. 

 In Nigeria, many adults with cleft lip are forced to live in isolation. They are treated like outcasts by neighbours, relatives and friends. 

 Researchers at the Lagos University Teaching Hospital (LUTH) in a 2016 study found that 35.3 percent of respondents believed the deformities were an act of God. Others, 5.9 percent, believed the birth disorders were the doing of an evil spirit and 9.8 percent thought the condition was due to wicked parenthood. 

The study further revealed that 73 percent of mothers and  59 percent of fathers were ashamed of having a child with a labial or facial cleft. Two of the respondents wanted to abandon the baby in the hospital. About a quarter of the respondents wished the child was never born.

Njideka Bartholomew had cleft palate and had an operation on July 3, this year by the Cleft and Deformity Foundation, an NGO that provides free surgery to cleft patients, but the deformity has affected her speech. People can barely hear and understand her when she speaks.

She is depressed and tired of facing the stigma. “People are avoiding me,” she said bitterly. “People do not mingle with me, and they insult me a lot. I find it difficult to go out.” 

She doesn't know her father. A few weeks after she was born with cleft palate, her father abandoned her and her mother. The stigma didn't allow her to pursue an education after she finished primary school. 

Bartholomew, now 30, is single. In Nigeria, women tend to marry before reaching the 30 age mark. She is willing to get married, but no man has shown any interest in her so far. 

“Men are avoiding me because of my speech disorder. So they cannot come to me,” Bartholomew, who has never been in a relationship, told TRT World. But she is interested in starting a relationship with the hope a man will ignore her deformity and fall in love with her. 

Need for Comprehensive Cleft Management

Consultant Oral and Maxillofacial surgeon, Dr Seidu Bello told TRT World that for patients to avoid stigma and to be returned to complete normalcy, they must undergo comprehensive cleft management. 

When somebody is afflicted with a cleft lip or palate, there are multiple issues that come with it. “There is a psychological problem; the patients will not be able to speak well, especially if it is palate. Also, as they grow, even after the surgery, the teeth are not well arranged. As a cleft patient grows, there is a tendency that some corrections will still be needed,” said Dr Bello.  

Patients like Bartholomew need comprehensive cleft management to correct their speech disorders.  

The Cleft and Deformity Foundation travels to rural areas to create awareness about cleft management and helps patients fight social stigma.  

“We try to tell parents and patients that cleft is a natural occurrence,” said the foundation’s program manager, Solomon Ibrahim. “It has nothing to do with witches. Some people think it is connected to ancestral spirits. We always try to tell parents and adult patients not to think they cause such deformities. We always tell them there is a scientific solution to it.”

But no one has come to tell Balikisu that her 3-month-old Ishaq can survive. With no help in sight, Balikisu refuses to give up on her  child. 

“Only a surgery can save my daughter, and I need help for her to survive,” she said.