…Parents elated over surgical intervention
TOPE OMOGBOLAGUN writes about the difficulties faced by mothers caring for children born with cleft lip and cleft palate
Arrival of a newborn brings joy but when the expected excitement heralding such news is suspended by the parents and well-wishers, there is a cause for alarm. .
“Congratulations! Please take your baby,” said the matron at the hospital where a woman identified only as Adesina gave birth to her daughter, Florence.
Adesina said the matron’s word roused her and she opened her eyes to carry her baby. But her mood changed when she beheld the baby and discovered that she had an orofacial palate; a combination of cleft lip and cleft palate.
Centres for Disease Control and Prevention described Cleft lip and cleft palate (orofacial clefts) as birth defects that occur when a baby’s lip or mouth do not form properly during pregnancy. Online sources further stated that cleft lip and cleft palate could occur on one or both sides of the mouth. Because the lip and the palate develop separately, it is possible to have a cleft lip without a cleft palate, a cleft palate without a cleft lip, or both together.
The World Health Organisation stated that globally, one in every 700 children is born with the defect. One in 1200 children estimated cleft incidences are of African descent. 19,000 cleft children are born every year in Africa out of which 12,000 in West Africa and 6,000 in Nigeria.
Adesina stated, “I started to cry, wondering what happened to my child. I didn’t do anything wrong. I wanted to know why my child was that way. I was sad because nobody in my family ever had such disease, so I felt terribly bad when I saw her at birth because I went through a lot during her pregnancy.”
Adesina whose eyes became misty as she talked narrated that having endured so much during the pregnancy, she look forward to carrying her baby.
She noted that it was her only hope of compensation since the father of the baby had abandoned her and the pregnancy.
She added, “Her father never accepted the pregnancy; it was my parent that stood by my side. It was terribly difficult because apart from the internal battles I fought, I also faced discrimination from people.”
Mixed reactions
When a mother, Abosede Bamidele, welcomed her first child, she was so happy with the love she received from family and friends as they showed support throughout her pregnancy journey.
She woke up to murmurs mixed with congratulations at her ward. As the hospital where she delivered her baby girl, Redeemer, often does, a mother would be given her newborn to pray for her. But in her case, she couldn’t even say a word of prayer for her child. It was all tears and weeping.
She said, “The normal practice of the matron was after delivery, she’d give the child to the mother to pray for her child but when she gave me mine, I observed that something wrong with the baby. I asked her what was wrong. I said, “Look at my baby’s mouth, did you cut her mouth? When she told me that was how she came, I started to cry. I cried to the extent that I remained inconsolable.
“But the matron assured me that she’d be fine and nothing would be wrong with her. She showed me mothers of children with similar birth defects and how better the babies looked after surgeries.’’
Mother of seven-year-old David, Mrs Sola Adebesin, recounted her experience, stating that her child’s condition at birth was quite scary and she was ashamed.”
She narrated, “In fact, I avoid taking him out. If I have to take him out for whatever reason, I covered him with a shawl. But as he grew, the shawl made him uncomfortable but I still used it because I didn’t want people to see the cleft to avoid unnecessary attention.
“I gave birth to him with a cleft; he had cleft lip and the inner palate. At four months, the cleft palate was operated upon at the Lagos University Teaching Hospital.
“He’s my third child and we have never had a situation like; none of my children had it. In fact, he is the first child with cleft that I saw. You can imagine what I went through as his mother. Many times, I wondered what I did wrong.”
Another mother, Grace Ojodu, was unaware of cleft or lip palate until she had her fourth child, Majesty.
She was so oblivious of her child’s condition that she didn’t suspect anything until the child was two years old and couldn’t talk. It was at that point she began to get worried before she was told of her daughter’s palate condition.
Ojodu narrated, “I didn’t even know about cleft or lip palate, so when I gave birth to her, I never knew that anything was wrong with her, though I observed that something was coming out of her nose. She is my fourth child and we have never had any of such experiences before.”
Defects robbed babies of breastfeeding
Adesina said she felt pained that her daughter never sucked her breasts. She explained that it was emotional and physical pain for her because the breasts usually got sore and painful whenever the child wasn’t sucking.
She said, “I suffered a lot because she couldn’t suck my breast based on her condition. I would struggle to get the breast milk out into a feeding bottle for her to have a taste of breast milk and also relieve me of the pain.’’
Bamidele said she was unhappy until her child had the first surgery to correct the cleft lip. She added that she cried for long because she couldn’t comprehend how such fate would befall her, especially as her baby couldn’t suck her breasts.
She said, “Things were not normal for me until my baby was four months when we had the first clip surgery at the University Teaching Hospital, Ibadan, Oyo State.
“It was such a hard thing for me as my child wasn’t sucking breasts or eating. I had to look for a way to give the food to her because if one wasn’t careful the food would start to pour from the nose. I would cry and cry. I had many sleepless nights as a result of worry.”
Bamidele said it was when she went to UCH that she found out that the condition was a bit common in children.
She said, “When I got to the hospital, I saw that she wasn’t the only one with the condition. There were others with the same predicament, some were even worse. It was at that point I calmed down a bit. When she was four months, we had the first surgery on the cleft that was when I got relaxed a bit that the deformity in the mouth had been corrected.”
Majesty like many other children with cleft lip never sucked from her mother’s breasts but the unsuspecting mother didn’t see it as an issue while she was a baby.
Ojudu explained, “She didn’t suck at birth but I didn’t take it seriously. During her birth, I had a sort of complication, so, I wasn’t even well enough to monitor her myself.
“By the time I was a little bit okay, the following day, she had been placed on baby formula. I usually do not lactate early. When I tried to make him suck, so my breast milk could come out, she didn’t. She didn’t take breast milk. I never knew anything was wrong with her, I thought she was just being lazy to suck breast milk since she found an alternative. I didn’t suspect anything until her father observed that there was a hole in the upper part of her mouth. In fact, I assumed that it was as a result of the baby food.’’
Stigma associated with raising children with orofacial
Adesina said it was inhumane of people to deride her baby’s condition not considering her plight. She noted that since she gave birth to her baby three years ago, the scorn had not stopped. .
She said, “The scorn from people even worsened the situation because they started to ask me that where did I get her from? Some would ask me if I walked in hot sun or at night. I consoled myself that I was not the one who gives babies and I didn’t do anything to have a baby with a cleft lip. I was regular with antenatal and I did everything right.”
Adesina, lamented that having a cleft lip and cleft palate had not only affected the child’s social life, but also her chances of getting an early education.
The woman stated, “She couldn’t go to school because of the mouth. Many people inquire what was wrong with the baby and I pretend as if I didn’t even know that they were talking to me.
“We didn’t even bother to take her to school for registration because we were aware that they wouldn’t admit her based on her looks. We taught her the little we could from home.”
Bamidele said the Redeemer’s situation often made her mother sad especially as she suffered rejection from her father after seeing her for the first time.
She said things were really difficult when the baby’s father saw her at the hospital and rejected her on the claim that none of his family ever experienced such birth defects.
She explained, “When my husband saw the baby, he rejected her that he doesn’t want her that she could never be his child. She said I was the one who knew where I saw the child. Things almost turned awful between my husband and I. I thank God for the medical doctors who enlightened him about the issue. It was then that he accepted her as his child.”
In a paper titled, ‘Gender issues in parenting cleft lip and palate babies in southern Nigeria: a study of the University of Benin Teaching Hospital,’ by A.A. Umweni & S.A. Okeigbemen, indicated that the birth of a CLAP child had adverse effects on its parents.
The research added that the effects were greater on their mothers. Parents’ reactions, combining shock and grief, showed in 92 per cent of mothers compared with 28 per cent of fathers (p < 0.01). Sixty per cent of fathers were calm or indifferent compared with four per cent of mothers (p < 0001).
The adverse effects on mothers were accentuated by the husband’s attitude to his wife, the reaction of in-laws, polygamy, poverty and societal influence. It is suggested that there was a need for public enlightenment programmes to educate parents of CLAP babies and the general public on the management of CLAP deformity, and establishment of centres to cater to the socio-psychological need of the people affected cannot be overemphasised.
Bamidele added that one of the reasons they had to go for an immediate surgery was that beyond their worries, they needed to make the child feel accepted into society early enough as people avoided children with any form deformity like a plague.
“We needed to do it to help our child’s self-esteem. I knew she couldn’t be accepted with cleft palate. It was after then that people attempted to even carry or play with her.”
Ojodu lamented that it became shameful and burdensome when other children of Majesty’s age could talk but hers couldn’t and people began to say nasty things to her hearing.
She said, “When she became of age to talk and she wasn’t we became concerned, People were already looking at her somehow and some started to make derogatory remarks which began to trouble me. Personally, I wasn’t happy that my child couldn’t talk then, I had to deal with that. It was a whole lot for a mother. People should be merciful to others and also learn to mind their business.”
Torn between hopelessness and despair
For children with cleft and lip palate, surgery is the best solution to repair the cleft and for those who cannot afford the cost of a surgery it’s usually harrowing.
Adesina said after she gave birth to Florence and was advised to let her undergo surgery, she tried to do that to no avail.
She said, “When we gave birth to her and found out that she had cleft palate, we were told to bring her when she was nine months for surgery.
“We tried our best to get the money to do the surgery for her but we couldn’t get money. At the general hospital that we went to, we were told that it would cost about N250, 000. We tried to look for other places but we didn’t get anything less than that. We are not so financially buoyant; we trusted God for a miracle till it was announced in church that there would be a free surgery for cleft palate at the Redemption camp.”
Bamidele also said it was a tough one for them, adding that they wanted to take care of the child first before seeking financial help to make the baby undergo surgery.
She said, “It was really tough getting the money. After we had the first surgery, we began to save gradually for the second surgery which she had at three years. That was to correct the inner palate. Unfortunately, it didn’t go well as the first, so we had to do a correctional surgery so that she could talk properly. We didn’t have money for that one. She had to live with the condition for another four years.”
For Adebesin, shame and fear of rejection continued for four months until she did a surgery for her son. Our correspondent gathered that when the surgery was done to repair the cleft lip, they thought that was the end till they had to deal with several other issues.
She narrated, “We had to ensure he talks well and treat the infected part. We frequented the hospital like it was our second home. Because the inner palate is open, he’s prone to infection. In a short time he was down with infection, and was in and out of hospital. Sometimes, he would have cold and catarrh and fever. It was usually a journey of frequent visits to the hospital.
“His hearing was also affected too; I observed that he had hearing impairment. It was even his older siblings that called my attention to it that it’s like David doesn’t hear well because they observed that he doesn’t listen whenever we said things to him. That was when we started observing. We went to see a doctor about the hearing impairment who told us that the cleft palate often affect hearing too.”
Adebesin said that upon noticing that many things were at stake, she devised means to carry out surgery on her child immediately. She stated that she was trying to search for funds when she was introduced to the free surgery programme.
She said, “Ever since then, I have been making several attempts to operate on the inner palate but the cost was quite high and I couldn’t afford it. That was why he still had the palate at seven years.
“Fortunately, an aunt sent me the flier for a free surgery programme and told me to attend. Initially, I told my mum to help us check it out. Thereafter, I came too. We came in two days ago and we must commend them that we were properly taken care of. The surgery was carried out a day after and to the glory of God, it was a successful one. Before the surgery, we had a lot of laboratory tests. They washed his ear and other tests were carried out for free. We even got drugs for me. I am really happy.’’
Happy mothers, smiling children
On her part, Adesina said the free surgery was a solution to her years of prayers and weeping. The procedure was organised by the Redeemed Christian Church of God in collaboration with the Smile Train Foundation to celebrate the 80th birthday of the church’s General Overseer, Pastor Enoch Adeboye.
She said, “I came from Ilaro, Ogun State for the surgery for my child and I am grateful to God that it was successful. We were subjected to mockery. I thought of how I would get out of the situation. But I am grateful to God that it was a success.”
The mother smiled at her daughter as she played despite a cannula in her hand at the hospital ward.
When our correspondent greeted and asked “how are you doing?, Florence responded with a firm “fine” and an infectious smile. She had surgery the previous day.
Also, Bamidele was full of gratitude to the organisers who she said returned smiles to their faces.
Bamidele noted, “It was after she was two years and wasn’t talking that I knew something was wrong with her. I went to the hospital to complain and that was when the doctor told us that cleft palate was a normal defect in some children and that it would be corrected without any problems.
“After the first surgery, I found out that she wasn’t talking like every normal child. They looked for ways to improve her with time but it didn’t work out.’’
On her part, Ojodu said after spending so much on getting her child treated, they couldn’t afford another surgery until a friend told them about the programme.
She stated, “My friend sent me the flier and I decided to attend the programme. I say that they treated us well. Our expectation was met.
“We thought we would be asked to pay part of the bill. But they bore everything. I am grateful and optimistic that all things would go well. God will bless them the organisers.
“ We were told that it was in celebration of Daddy G.O’s 80th birthday. We got all the care at no cost. I am so grateful for everything.”
Cleft lip and cleft palate explained
A paediatrician, Dr Olayemi George-Durotoye, said the cause of cleft clip is unknown but occurs as a result of the interplay between nature and nurture, between genetics and the environment.
She explained, “What really happens is that during the folding process of the face, the places that are supposed to be touched and joined together, when that does not happen, it leaves a gap in the lip or in the roof of the mouth which is the palate. .
“What we usually advise mothers, from the three conception stages, before they get pregnant they should take a lot of fruits and vegetables that would provide them with the essential vitamins that they need like folic acid, which is important.
“We advocate that women should take folic acid when they are planning to get pregnant because those formations of the brain and the face take place early in pregnancy even before some people even know that they are pregnant. That’s why we advocate for a preconception use of folic acid and they should attend their antenatal classes to avoid indiscriminate use of drugs or herbs during pregnancy and to ensure that they take all the vaccinations.”
George-Durotoye said when a child is born with a facial deformity; their parents should not throw the child away.
The paediatrician further said that there were myths about such disease in children.
She noted, “The belief that such things are caused by the gods or because the mother went somewhere or maybe the mother ate something is untrue. When you have such cases, take the child to the hospital. Before the child is old enough to undergo surgery, the mother would be counselled on how to feed the baby to prevent malnutrition and recurrent aspiration; that’s the food going down into the nose, to make sure that the child doesn’t have chest infections all the time. After that, once the child is about three months, the surgery can be done to correct either a cleft lip or cleft palate.”
Also, a Professor of Oral and Maxillofacial Surgery at LUTH, Mobolanle Olugbemiga-Ogunlewe, noted that the cause of the cleft lip and cleft palate were not fully understood.
The don noted that studies had shown that the abnormality was caused by an interaction between genetic and environmental factors.
Ogunlewe, a consultant maxillofacial surgeon, added that while the genetic factors occurred as the baby was being formed in the womb, the environmental factors were things the pregnant woman acquired or exposed to.
“Those things may be the drug she takes, radiation, or the infections she is exposed to while pregnant. A cleft usually occurs when there is an interaction between the genetic and environmental factors, particularly in the first six to seven weeks of pregnancy,’’ she stated.
She further said that by the seventh week of pregnancy, the face was already formed and by the ninth week, the roof of the mouth was formed, noting that a cleft would occur usually in the early period of pregnancy.
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