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In Nigeria, an NGO is Making Children Born with Cleft Smile Again
In this report, Arinze Chijioke tells the story of how Smile Train, a non-governmental organization is providing free cleft surgeries for children born with cleft deformities in Nigeria
Inside the children’s ward at the National Orthopaedic Hospital, Enugu, 1 year and months old Gideon Iboroma lay on the bed, whimpering as his mother, Destiny Iboroma, tried to lull him to sleep.
Gideon had just undergone a surgery that lasted for about 2 hours.
“I am happy that finally, my son can eat well and that he is in perfect condition “Destiny, 35 said.
Two years ago, precisely on September 28, 2020, Gideon was born with a cleft lip and palate- terms used to describe facial and oral malformations that occur very early in pregnancy, while the baby is developing inside the mother- at a health centre in Rivers State, Southern Nigeria.
Although his mother discovered that he had the deformity after delivery, the hospital could not do anything. The doctors referred her to the Niger Delta University Teaching Hospital, Yenagoa, the Bayelsa State capital.
“When we got there, they did not take the matter seriously, “Destiny said. “They said he was too small and that we would have to go and come back after months. “When we did, they were not paying attention to us”.
Increasingly, Destiny became worried because each time she tried to feed her son with breast milk, it came out through his nose and he often cried. While some people advised her to abandon her son, Destiny was determined to find a solution.
“I had heard stories of how children born with a cleft in my village in Rivers State were left to die because their parents could not find a solution and because they felt the children were evil “she said.
Cleft remains a global nightmare
Around the world, a baby is born with a cleft- a congenital malformation of the lip, palate, or both, every three minutes. On average, one in every 500–750 live births result in a cleft. While an estimated 19,000 children are born with the condition annually in Africa, about 6,186 babies are born with it in Nigeria every year.
A US Centre for Disease Control and Preventionn report, shows that though there is no single known cause of cleft lip/palate, a combination of complex genetic and environmental factors like smoking, alcohol consumption and certain kinds of medication during pregnancy could increase the risk of a child being born with the defect.
When left untreated, having a cleft condition can cause serious health issues, including difficulty in speaking, language development, dental problems, ear infections and hearing loss and difficulty in eating which can lead to malnutrition.
In Africa, some babies born with it do not receive the surgery they need to correct the problem due to the perception that clefts are an evil curse or punishment for parental sins such as witchcraft or prostitution . This leads to the social isolation of such children and their families.
In December, three months after Gideon’s birth, Destiny’s sister whose son also had a cleft of the palate told her about how she came to the National Orthopaedic Hospital, Enugu, where Smile Train – a non-profit organization that provides free cleft surgeries for children, sponsored one for her child and he became well again.
“She gave me a doctor’s contact and asked me to call,” Destiny said. “When I called, the doctor asked me to take a picture of my son and send to him, I did and he asked us to bring him, “she explained.
Solution at last
In the same month, Destiny travelled down to Enugu with her son and when they got to the hospital,Dr. Ifeanyichukwu Onah, a plastic surgeon, told her that the cleft lip will have to come first since Destiny was just three months old.
“Cleft lip and Palate is not common, but usually, we do the lip surgery first for children that have both” said Onah, who has attended several training and workshops- all Smile Train sponsored- to improve his skills in carrying out cleft surgeries
After he examined Destiny and found that his minimum weight for age was five kg at three months, the surgery was done and Destiny took her son back home, relieved and hopeful that he will get better when the cleft palate is done.
In March 2022, when Gideon became 1 year and 4 months, his mother brough him back to the hospital to have his cleft palate repair. Usually, Onah said, cleft palate repair is done when the child is about a year.
“We had to wait till he was up to 1 year and to also be sure that he is within the range of safe surgery because we also had to check if he was properly weighted for age, “he said.
Onah explained that at Gideon’s age, he was supposed to weigh 10kg, according to the World Health Organization, WHO weight for age standards. But he was 9kg and that was acceptable.
He said he would have done a combined lip and palate surgery if Destiny was a year old and had not had anyone done”.
“While the anaesthesia-use of medicines to prevent pain during surgery and other procedures- started around 11am, the surgery itself started at 11:45 and ended at 1:30,” he said. “Cleft palate takes a significantly longer time than the cleft lip which takes between 45 minutes and 1 hour to do”.
Now, Gideon is fine. He can eat without difficulties and his mother is happy.
“I am glad I did not listen to those who asked me to abandon him,” she said. “I did not even spend any money on the surgery. “They gave us food, drugs and took very good care of us”.
Commitment to cleft surgeries
Since 2007, Smile Train- which is the world’s largest cleft charity- has been providing free cleft surgeries for children and changing the narrative that clefts are an evil omen.
Working with its local medical professionals across Nigeria, the NGO has carried out over 22,000 cleft surgeries. But its program director in West and Central Africa, Nkeiruka Obi, hopes this figure will double in the coming years.
So far, the NGO has so far established 15 comprehensive cleft care partnerships in Nigeria including three for nutrition, five for speech, and seven for orthodontics.
For Onah, Smile Train has continued to add smiles to the face of parents and children born with cleft across Nigeria, helping to see that there are people who go to the interior to look for the patients where they are and engage with the to come.
“Smile Train’s work is quite commendable, Onah said. “Even when some of the children are not up to speed in terms of nutrition, they are enrolled with nutrition and those who get up to speed with nutrition and are properly weighted for age, we do the surgery”.
Continuing, he said “I have listened to the patients I have operated on and honestly, when you hear them talk, you appreciate the extent of their psychological and psychosocial deprivation,”.
According to him, it is beyond a physical separation in the lip or palate and goes deep into the persona of the patients because the sense of rejection and inability to communicate and be accepted and loved is something that only they can understand.
“But when they talk to you, after having had their surgery and are now able to communicate and reintegrate with people, you will see that what Smile Train is doing is great “he said.
Like Destiny, Sylverleen Okwu, 48 was determined to find a solution after she gave birth to her daughter, Marvellous Okwu and discovered that she had a cleft palate- an opening in the roof of the mouth that occurs when the tissues do not come together during development in the womb.
It was in August 2009 at a Hospital in Osisioma, Abia State, Southeast Nigeria. After delivery, Sylverleen noticed that each time her daughter wanted to throw up fluids, it came out through her nose.
“At first, I thought it was because of how I lay her, “she said. “I had to change her position and even put pillow on her head, but nothing changed. She continued to throw up through her nose”.
After she was discharged, Sylverleen left the hospital and did not tell anybody what was happening. She felt it was nothing serious. But when she got home and started giving her daughter breast milk and discovered it was coming out through her nose, she became worried.
“Thesame thing happened when I started giving her infant milk three months after and Pap six months after,”Sylverleen said “At some point, she started running temperature and I took her back to the hospital where she was born”.
At the hospital, Sylverleen was given drugs and told that her daughter’s temperature will be normal again. But it continued and one day, she decided to visit a traditional birth attendant, thinking it was an abdominal injury.
“The TBA advised me to take her to a hospital, “she said. “Immediately, I went to the Abia State University Teaching Hospital this time and when I got there, I got a card, and we were directed to the doctor in charge of children.
After several examinations, the doctor found out that Marvellous had cleft deformity.
“He opened my daughter’s mouth and when saw the hole, I screamed and asked the doctor if there was any solution,”. “He said yes and that it is going to be surgery which can only be done when she is over a year”.
When Marvellous grew up and started going to school, with the cleft palate yet untreated, she could not play with other children. She always stayed on her own, even in church.
“She always told me how other children laughed at her because she could not speak well,” Sylverleen said. “I told her we will find a solution and she will be able to play again”.
For years, Sylverleen searched for a solution without finding one. But she was not willing to give up, against advice by her husband, children and friends who told her it was not possible to correct the congenital anomaly.
However, in December 2021, when her brother’s wife came to visit and Sylverleen told her what was happening to Marvellous, she said It could be corrected and that she will help me with the contact of a doctor in Enugu.
“In January 2022, she got the number and when I called, we were asked to come to Enugu in February, “she said. My family was not happy with me because they thought of the cost of the surgery. I was bothered too”.
At the hospital, Sylverleen and her daughter who is now 12, were taken to the children’s ward and when she asked one of the doctors how much the surgery will cost, she was told that Smile Train had taken care of it.
“Finally, the surgery was done, and the doctor asked me to always give her soft food till she is okay to eat solid food, “she said. “I have been doing that and we are now at the speech therapy stage”.
A bit of improvement, not good enough
Onah also said that there has been a bit of improvement in the rate at which parents of children with clefts present them for surgeries.
He said that he often gets calls from parents directly and each time they say the child was born a week ago or few days ago, he encourages them to come so that first contact can be established, and the parents can be thought how to feed, particularly those who have cleft of the palate.
He however regretted that the increase has not translated to the kind of numbers that are expected, adding that there are more patients who need to have their surgery done but are yet to be linked with health facilities.
“When we look at the cases we are doing, they are still trickle,” Onah said. “We are still looking at single digit numbers In a month, meaning that we need to do more so that we can see the people who have this condition linking up with free comprehensive care”
Need for government partnership
To achieve the goal of having more children born with a cleft have access to health facilities where they can get corrective surgeries, Onah said that there was the need for thegovernment to partner with NGOs such as Smile Train.
“Government right now is very involved with immunization and when you are dealing with immunization, you are seeing children and parents, “he said. “So, we would love to have partnerships with the government so that when they do immunization, the work of Smilte Train can be advertised and people who know those with Cleft deformities can inform them about where to get free treatment done”.
He noted that the government can also increase the drive for health insurance which covers children with such cleft deformities, so that when NGOs such as Smile Train move aside, after years of impacting lives, parents can always present their children for surgeries.
“But if continue to have below 5% of Nigerians covered with health insurance, like we do now, quite a lot of people with cleft will struggle with knowing where to go and how to treat” he said.
Now, Sylverleen is helping to inform people about how Smile Train is providing free cleft surgeries changing the perception that cleft is evil and cannot be corrected.