According to available statistics by the united nations, in every one thousand birth in nigeria, a baby is born with a cleft--a scary mouth deformity. an estimated 5,060 children were born with cleft in the country between 2009 and to date. some of the victims have in the past been dubbed witches and killed or thrown away by parents. however, Roland Ogbonnaya writes about an organisation’s effort to create awareness on the deformity as well as bring smiles to the faces of the victims
Five year-old Miss Humble Patrick, who lives with her mother in Minna, Niger State, could not freely associate with her peers before now. At the time of her birth the mother gave different excuses to avoid neighbours and visitors to see the newborn baby as it is in Nigerian tradition. The little girl was locked up inside the house any time the mother was going out due to shame.
At the age of five, the mother could no longer lock the little girl in the house, but she was avoided by her peers as she lived a life of exclusion. But today the young lady and her mother can heave a sigh of relieve as the girl can lead a normal life after her cleft was corrected by a team of surgeons assembled by SmileTrain, an international humanitarian organisation that has chosen to put back smiles on the faces of cleft as well as pallet victims across the world.
In a letter of appreciation to SmileTrain recently, Mrs. Patrick said: “I thank you for the wonderful and successful operation carried out on my daughter, in fact I am overwhelmed. This is because I have experienced all sorts of abuses and rejection from my husband’s family. They believed that the child was evil. Some people instructed my husband to force me to stop feeding the baby at birth, so that she could die.
“My husband and I took her to the General Hospital, where we were referred to the University of Nigeria Teaching Hospital (UNTH) Enugu, about 500 kilometres away. An enquiry at the hospital put the estimate cost at two hundred thousand Naira (N200,000), equivalent of $1,250. Since the cost was not affordable, I decided to nurse my baby. I even stopped going to church because each time I did, her peers would gather around us to look at her which made me very uncomfortable.
“Today, I thank God that the operation has been carried out at no cost, and all the non-supportive family members were all ashamed. Thank God today that I am free of all insults. I can now go to church and my daughter who is now five can go to school without suffering any form of rejection from her peers,” Mrs. Patrick wrote.
Three months old baby Precious is the second child of a 32 year-old father and 28-year old mother. She was a cleft victim. Her parents were very scared when she was born apparently “deformed” and felt very ashamed to let neighbours see her. They made up excuses for why visitors could not see the new baby. They were also at a loss about what to do until her auntie heard news of SmileTrain collaboration with a Federal Medical Centre following an early morning television advocacy programme. It was therefore a scene to behold when the dressing was removed postoperatively as there was joy everywhere.
Another patient, Sammy Adjei, a Ghanaian but lives in Nigeria, has every reason to thank SmileTrain also. He has never been a happy person in most part of his 55 years on earth because of the discomfort and shame cleft deformity brought to him. As a child and young adult, he was abused and taunted by peers and adults and virtually become withdrawn and introverted because of the “shame” of his condition. Little wonder he was unmarried at 55. The brightness in his eyes and the confidence he radiates after the surgery demonstrated the ultimate goal of the programme.
These are some of the success stories of cleft victims across sub-Sahara Africa and Nigeria, who got their smiles back after surgeries to correct their deformities was carried in different parts of the country courtesy of SmileTrain. Though various researches are going on the world over to ascertain the cause of cleft and palate in children, in Nigeria, there have been some adduced reasons. One of them is the tendency of mothers taking herb or root medicines popular known as Agbo and as a genetic disorder, it can occur in places where people marry as close as cousins. Mrs. Nkiru Obi who represents SmileTrain in West Africa said this could be more reason why the deformity is prevalent in the Northern part of the country.
“As we speak now, there is a research going on in the US on the causes of the deformity, but primarily things are being pointed at genetic disorder, by genetic disorder I mean a case were genes were not able to come together either because they have some semblance. So you find that those who are closely related if they marry and start having babies, their children will have this disorder. In the cultures that allow cousins to marry you have more of cleft incidence.
“Another thing that can cause it is chemical intake during pregnancy. We have cases where pregnant women take Agbo (herbal or root medicine) with the understanding that it will shrink the baby for easy delivery and they forget it doesn’t work that way. When they have their babies, there is likely a defect like cleft or any other. Of course the third is too much exposure to radioactive machines like going though x-ray all the time.
“We have discovered that the tendency of cleft children is more in the North and we have done a lot of work in the recent time. The incidence is high, but we have had serious challenges of religious and cultural believes. Some of them, especially the Moslems see it as a gift from god, which is nobody’s fault so they leave the children like that. We need to educate the people on this while the government at all levels have to reduce poverty,” Mrs. Obi emphasised.
A cleft is a fissure or opening—a gap and it is the non-fusion of the body’s natural structures that form before birth. Approximately 1 in 700 children born in developing countries have a cleft lip and/or a cleft palate. In decades past, the condition was sometimes referred to as harelip, based on the similarity to the cleft in the lip of a hare, but that term is now generally considered to be offensive.
Wikipedia further explains that Clefts can also affect other parts of the face, such as the eyes, ears, nose, cheeks, and forehead. In 1976, Paul Tessier described cleft as a congenital disorder, or congenital disease or condition existing at birth and often before birth, or that develops during the first month of life (neonatal disease), regardless of causation. Of these diseases, those characterised by structural deformities are termed “congenital anomalies” and involve defects in or damage to a developing fetus.
“A congenital disorder may be the result of genetic abnormalities, the intrauterine (uterus) environment, errors of morphogenesis, infection, or a chromosomal abnormality. The outcome of the disorder will depend on complex interactions between the pre-natal deficit and the post-natal environment. The older term congenital disorder does not necessarily refer to a genetic disorder despite the similarity of the words. Some disorders can be detected before birth through prenatal diagnosis. This is the reason why the deformity has been taken care off in western countries because they are found early during antenatal and the surgeries carried it immediately after delivery of the baby. This is not the case in the developing countries like Nigeria where many women especially in the rural areas would prefer going to the traditional birth attendants than going to the hospitals.
Children or adults with cleft go through enormous psychosocial problems. Most children who have their clefts repaired early enough are able to have a happy youth and social life. Having a cleft palate/lip does not inevitably lead to a psychosocial problem. However, researchers say adolescents with cleft palate/lip are at an elevated risk for developing psychosocial problems especially those relating to self-concept, peer relationships and appearance. Adolescents may face psychosocial challenges but can find professional help if problems arise. A cleft palate/lip may impact an individual’s self-esteem, social skills and behaviour. There is research dedicated to the psychosocial development of individuals with cleft palate. Self-concept may be adversely affected by the presence of a cleft lip and or cleft palate, particularly among girls.
According to Wikipedia, research has shown that during the early preschool years (ages 3–5), children with cleft lip and or cleft palate tend to have a self-concept that is similar to their peers without a cleft. However, as they grow older and their social interactions increase, children with clefts tend to report more dissatisfaction with peer relationships and higher levels of social anxiety. Experts conclude that this is probably due to the associated stigma of visible deformities and possible speech impediments.
A cleft lip and or cleft palate may affect the behaviour of preschoolers. Experts suggest that parents discuss with their children ways to handle negative social situations related to their cleft lip and or cleft palate. A child who is entering school should learn the proper (and age-appropriate) terms related to the cleft. The ability to confidently explain the condition to others may limit feelings of awkwardness and embarrassment and reduce negative social experiences.
As children reach adolescence, the period of time between age 13 and 19, the dynamics of the parent-child relationship change as peer groups are now the focus of attention. An adolescent with cleft lip and or cleft palate will deal with the typical challenges faced by most of their peers including issues related to self esteem, dating and social acceptance. Adolescents, however, view appearance as the most important characteristic above intelligence and humor. This being the case, adolescents are said to be susceptible to additional problems because they cannot hide their facial differences from their peers.
Mrs. Obi, who said that SmileTrain has been creating awareness as well as carrying out surgeries in West African region, agreed that there is alarming case of people living with cleft. “We have many in Nigeria and West Africa because we cover the sub-region. We also have adult cleft. So far the ones we have reached have been operated on, expressed satisfaction and are great testimonies. We need awareness and mobilisation of patients, while also make sure that hospitals are well equipped to carry out such corrective surgeries. In Nigeria we in partnership with over 60 hospitals across the country, no state is left out, we work with both private and government hospitals.”
More tragic is the fact that in the 21st century Nigeria, some communities are so backward that they see cleft children as bad omen to the family or even witches. Some children born with cleft are either dumped in a river or unused well to die or deny them food and allowed to die slowly. Mrs. Obi said “it’s very unfortunate that it’s still happening in some part of the country. I was on my way recently to Ondo State on a mission and on the way some local council officials stopped us. When we explained our mission to the state, one of the ladies said she never knew that such deformities could be corrected because she knew a woman who had such a baby and the community thought it was a rabbit in human form and was dumped in an unused to die.
“This is one incident. We had a case in Gboko, were a couple had a twin—lovely children with cleft and we fixed them. Instead of the man to be happy he cried like a baby. We said you should be happy. He said no, that his first child had cleft and he did not know what to do with it and even the community said he had brought calamity to them. And he threw the child into the river. In Akwa Ibom, some of the children dubbed witches are cleft victims and it’s a major problem.
“Even in the North, some of them are abandoned and had to be among the Almajiris and this is a deformity that can be fixed. It is not a sign of bad omen, not witchcraft, it’s just a deformity that can be fixed. No child should be killed because he/she is a cleft, there is a solution, and SmileTrain has come with the solution, which is absolutely free,” she said.
Mrs. Obi said SmileTrain would continue its work in rural and urban areas of West Africa until cleft patients are giving back their smiles. She said that the interesting thing is that a patient is treated free of charge and even given transport allowance to go back home in certain cases. “We go through the community influencers, chairmen of the local governments and traditional rulers as well as wives of the governors. We are more welcomed when we use the local people, even in the hospitals we use local doctors. When a hospital doesn’t have the equipment we provide the equipment and even train the doctors on how to carry out such surgeries.
Some state governments or the wives of the governors have adopted the cleft correction as part of their programmes to their people. She mentioned Mrs. Ajimobi of Oyo State as one of such governors’ wives. “So also is the Kaduna State First Lady, wife of the Cross River State Governor, Mrs. Obioma Liyel Imoke and Governor Kwankwanso of Kano State. We have also been in contact with the Borno and Edo States governors as well as the Federal Capital Territory Minister and some local government chairmen to adopt it as their health programmes. SmileTrain is providing the money and many of them are buying into it. Because of the Kano State governor’s interest in the project, we have done more work there,” he said.
When a patient undergoes the surgery, there’s always a dramatic and instant transformation. In Cameroun there, Mrs. Obi said there was this guy who said he had never had girlfriend because of the deformity. “But after the surgery and six months later when I went back to Cameroun, he told me he has now found a wife among the bevy of women that flock around him after the surgery and invited me to their wedding.
“It’s a bad situation and the beauty is that there is solution, there are lot of victims to be treated. We need awareness to make this work easier. We have trained over three hundred doctors, though I cant put a figure on what we have spent on it, we also supply partner hospitals with surgery equipment in other to make the work easier. On equipment we have spent over three million dollars.
“Apart from restoring the life of cleft victims and putting smiles on their faces, we also restore broken marriages. One example was a mission in Ekiti State. I came out of the theatre were I joined the doctor to break the good news to this woman. She said I am happy my son has been restored, but only that life has been tough. When I asked about her husband, I did not know that I was just touching the sore point of her life. She caused and caused the man. She said she got married and took in and began taking Agbo. On delivery the man visited the hospital and saw the deformed baby and instantly denied the paternity of the baby and asked her to explain where she had gone to get the pregnancy.
“The husband told her not to come near his house with that baby. That was the last time she saw the husband and the lady went to her parents. The mother did not believe her also to the extent that they did not have the traditional naming ceremony for the baby. She kept hiding the child until she heard about SmileTrain in a local market. I told her that the husband will come back and for the sake of the child, allow him when he makes a come back. Few months later while I was abroad she called me, thanked and told me what I told her has happened and that the husband is back. She passed the phone to the husband and we spoke. What happened? After the surgery news got to the man and he now retraced his steps and today they are back as family Ado Ekiti,” she narrated.