Cleft Lips and the Pain of Nigerian Children

Although over 6,186 children are born with Cleft Lip and Palate in Nigeria every year, amounting to 16 children per day in the country, there appears to be little attention beamed on the public health challenge despite being correctable. Sunday Ehigiator writes

Every human is fearfully and wonderfully made, more so are children. The joy of having a child is comparable to nothing ever made or acquired.

But then, how quickly this joy runs out when a child is born with Cleft Lip/Palate (CLP) is a source of concern for stakeholders. Their concern is understandable given that the condition can be corrected so the children can live a hearty life devoid of bullying and discrimination, which is often the lot of those with Cleft Lip, with most of them wallowing in low self esteem.

Discrimination

Discrimination was the case of a 35-year-old Shadrach Aruoture, who at a point in his life saw the condition as a curse. He grew up in isolation and had been treated like an outcast by family and friends, save for his elder brother, Meshach who helped him grow.

According to him, Meshach never let him feel less human, as he was always rising to his defense whenever bullies and abusers came calling. “His death was like though my whole life was taken away,” Shadrach recalls with a heavy sigh of deep pain.

He continued, “I remember there was a time a boy called me “Aranmu” (someone who speaks through the nose), because I was still not in control of my emotions, I fought with a guy and injured him on his lips too. My brother joined me to beat up a lot of people who abused me then.

“It was not funny growing up being discriminated against and treated as a comic object at all. When my brother died, I had to rise up to my own defense and really saw life for myself. I became very hostile to the world due to several abuses and victimisation I suffered.

“I also remember when one of my teachers asked the whole class to sing a body-shaming Yoruba song for me. The Yoruba song was ‘Asin bumi ni mu je’ (meaning, rat has bitten off my nose), because of the way I talk. I cried my eyes out. I couldn’t beat my teacher, but if I had my way, I would have beaten him up. But he was sacked though, because my mum took up the matter.

“I also remember vividly when one of my lecturers shut me up, and asked me to return to my seat, because he was not hearing what I was saying while answering a question in class. There was also this scenario I will never forget in my entire life. I was asked to recite the English alphabet A to Z. I had difficulties pronouncing consonant letters.

“Then, the teacher, a woman, and probably mother, got angry because I was not getting it right, and out of frustration, she hit my mouth on the desk and lied to my parents that I fell while playing roughly, and they believed her.”

His parents, Mr. and Mrs. Abel Aruoture had had his lip corrected within the first four weeks after birth, but couldn’t go further with the palate due to baseless myths sold to them by family members and friends. They claimed Shadrach’s condition was a spiritual attack that needed a spiritual approach. Some even claimed he was an evil child born to waste his parents’ money.

Shadrach said he grew up being that young kid in an area every parent warned their wards not to go close to “because of my condition, as if I was some kind of plague to be avoided. This really affected my self-esteem as a child”.

Regaining Self-esteem

The well lettered and multitalented Shadrach, who is now his parent’s only son with two sisters, did not allow his condition deter him. Today, he boasts of a degree in Accounting and Finance from Delta State University, Abraka.

He said his father played a larger role in helping him regain his confidence and self esteem. “In 1997, my father handed me over to one Mr. Godwin Kpiliboh who taught me how to play drums. In the process of learning to play the drum, Pastor Toba Osuloye, who was our music director, called my attention to the fact that I have a very nice voice. He then asked me to sing while he recorded it on a tape then.

“I cried when it was played back to me. I cried because, at first I didn’t believe I sounded better in the recording, and also, it was the first time I was receiving such credit on my voice from an outsider, as he told me I sounded amazing, despite my speech condition, it was relieving.

“He also gave us an assignment to write and compose a song which I did. Then not too long after, he asked me to lead the choir on one of the Sunday services in church. That was how the whole transformation started for me.

“Facing the congregation to sing back then helped me a lot. After my first appearance to lead the choir then, I discovered I was actually a talkative. So, I used that as an opportunity to talk to people not minding my impairment. This restored my confidence and improved my esteem.”

Today Shadrach isn’t just a songwriter, singer, and instrumentalist, he is also leading a gospel musical group of 12, called, ‘Stewards Crew’, with over 10 songs to their credit.

On how the group came to being, he said, “I knew I love singing but I was still very timid and not confident to do it on my own. So, I decided to work with a team of talented singers who can do it on my behalf. My intention was to give these guys moral support. All I tell them is, if a guy like me with bad speech can do it, you can do better. So, those who believe in my instinct joined me.”

Encounter with Smile Train

Shadrach had his palate fixed in 2017 free of charge by Smile Train, world largest cleft-focused organisation with presence all around Africa.

Speaking on how he came in contact with the organisation, Shadrach said: “I went for ministration with my crew at one musical concert around Ojuelegba. While I was singing, a lady heard me and came requesting to see me after the event. We met and she told me she could be of help with my speech getting better. That she will recommend me to a doctor and that the surgery is free.

“The lady connected me with one Nurse Adesewa who in turn introduced me to the maxillofacial department and I was briefed about Smile Train, to be the sponsor of the surgery. To God be the glory, the surgery which would normally have cost me millions of naira was done for me free of charge. I was also enrolled in speech classes to help me improve on my speech, free of charge by the organisation.

“Today, there is a lot of difference between where I was before, and where I am now in terms of my speech. It has drastically improved. Also, I am no longer hostile to people; I have learnt to love myself and this has improved my self-esteem a lot, and being around kids also helped me in a lot of ways to be in control of my emotions regardless of what is said against me.”

Myths about CLP

A research titled ‘Social Analysis of Cleft Lip and Palate Abnormality in Nigeria’, carried out by Alice Umweni, from the University of Benin, Kokunre Agbontaen Eghafona, from the University of Benin and Hartwig Sauter Noma, of Children’s Hospital, Sokoto, Nigeria, posited that culture contributes to differences in medical care and the ways in which health is defined.

“It also can influence the relative incidence of a disease or disorder (Schaefer, 2005). Researchers have found that diseases are rooted in the shared meanings of particular cultures.

“Culture also plays an important role in the widely shared concept of disease in Nigerian society. Nigerians believe that diseases are caused by natural, preternatural, and mystical/mysterious factors.

“Preternatural explanations are related to the belief in witchcraft (Erinohso, 2005). The belief in witchcraft is widespread and entrenched in Nigeria. Witches are believed to exist and are reputed to have powers to cause unrest of the mind and illness.”

Despite the recognition of the natural explanation of diseases, it is sad that Nigerians often invoke sorcery, witchcraft, or cosmic forces as a plausible explanation for illness.

Such is the case of cleft lip and palate in Nigeria. In different parts of the country, there are different wrong perceptions of children born with CLP.

In some parts of the southern region of Nigeria, anecdotal evidence suggests that children born with CLP are believed to be a curse from the gods, and parents of the child must immediately seek and pay a native-doctor to help them kill the child before night fall, hence, he/she will bring bad luck to the community.

In some other communities in the western region of the country, if a woman gives birth to a child with CLP, it is assumed that she was promiscuous when pregnant with the child. She is abandoned by her husband and relatives and most times faced with the option of milking life out of the child to save her face and be accepted back into the society.

Some other parts of the western region of the country hold the myth that a woman that gives birth to a child with CLP must have mocked another child with similar condition, or offended a powerful individual who then places a curse on the unborn child, who could then be born with a CLP

Generally in Nigeria, children born with CLP are treated as though they have a plague that must be avoided, hence the maltreatment, bullying, abuse and all forms of discrimination.

Experts View on CLP

Speaking with THISDAY, a Medical Expert and the First Oral, Maxillofacial Surgeon in Nigeria, Prof. Olugbemiga Ogunlewe, explained that CLP was a birth defect characterised by a split either in the lip or a hole in the palate.

She said: “When a baby is born, the baby just comes out with the discontinuity of the upper lip or a big hole in the roof of the mouth.

“Cleft anomaly is not a life threatening anomaly. It is not something that will kill the baby. It is not evil. It is treatable, and the child can also live a normal life.

Causes of CLP

Prof. Ogunlewe noted that the causes of CLP are not yet fully understood, and research is still ongoing. However, she said “it is believed that it is caused by interplay between what we acquired from outside and then the genetics, what is internal.

“And because we don’t understand the causes we talk about risk factors that are those things that predispose an individual to having cleft. Most often it has to do with what the pregnant mother eats or was exposed to during pregnancy.

“If she is exposed to some radiation, takes some drugs that have not been fully studied or takes some concussion that she doesn’t know what it contains, or if she is sick during pregnancy etc. These are predisposing factors.

“That is why we advise that a pregnant mother should actually be cautious of what she takes in and the environment she goes to during pregnancy,” she said.

Treatment and Management of CLP

According to Prof. Ogunlewe, the lip surgery doesn’t take more than 40 minutes or even less, while the palate takes probably an hour.

“Because the child who has a CLP has some other associated problems or associated issues. It is not just the lip or the palate. The child cannot feed properly, the child may not be able to hear properly, that is, he or she may have some problems with hearing, the child may not be able to speak properly, particularly if he has that of the palate, and the child may also be malnourished.

“So all these things have to be taken care of, it’s not just about closing the gap. This is why the treatment takes some time. We repair the lip at about age three-month, and even at that three-month, the baby must be well fed, and must attain a certain weight level, and a certain blood concentration level etc.

“We do the palette when the child is six months old. We do the gum, that is the alveolus between seven and eight months. And even within or before these periods, if s/he has any problem with the arrangement of the teeth, it is taken care of.

“And then, by the time the patient has had full eruption, that is, all the teeth has come out of his mouth, they may be badly arranged, there may be a discrepancy between the upper jaw and the lower jaw, so those ones are taken care of when the child is about 20 years old. That is why it takes a while to have a holistic treatment.”

Call for Awareness, Solution

Prof. Ogunlewe said a child born with CLP anomaly cannot live a normal life if it is not repaired. “Imagine a child that cannot speak or hear very well, he cannot relate very well with his peers.

“The quality of life is going to be affected. The child is going to be withdrawn, and may even become hostile to the society due to frequent stigmatisation and bullying. This is why they must be treated.

“Without being sponsored, the cost of treatment is difficult to estimate because it is from birth till about 18 to 20 years. Some treatments are so expensive.

“In fact, orthodontist treatment alone is over a million. Yet the child is going to feed, do investigation, undergo speech therapy, transport to and fro the hospital, pay for surgery, admission etc. if we are to quantify it, it costs millions of Naira.

“We need more advocacies among society members to stop discrimination against theses children, but instead be the solution by linking such child to organisation like Smile Train, that is treating them free of charge. They won’t pay a dime.

“Parents should learn to bring the child out, and let them have access to care. They can come to the Lagos State University Teaching hospital, Department of Oral and Maxillofacial Surgery, and they will get help.”

She said the treatment which is fully sponsored by Cleft Train, from day one till the treatment is completed, is free of charge, even up to their transportation expenses.