LARA ADEJORO writes on how ignorance about cleft and palate diagnosis, care, and treatment remains a challenge in Nigeria.
Esther Ochegbe, 26, beamed with smiles on her chair beside the bed where her son lay. It was a sunny Friday at the inpatient paediatric ward in the National Hospital, Abuja.
She intermittently gazed at her 16-month-old son, Paul John, and she was eager to tell everyone how happy she was.
A week earlier, Ochegbe hardly showed the face of her baby; she covered his lower face with her wrapper in an attempt to hide the split on his upper lip.
The first-time mother was uncertain, even when she was assured that corrective surgery would be done for her son. She wondered about the ‘miracle’ that would be done to correct her baby’s cleft lip that had limited her joy of motherhood.
When John was born on July 26, 2022, his mother could not bear the sight of him. She wondered what she did wrong or who she offended. Her worries took a toll on her physically, emotionally, and mentally.
“I gave birth to him in a chemist’s run by a retired nurse and none of us knew the condition he suffered,” she narrated to The PUNCH. “I was sad seeing my first child that way. I cried uncontrollably. His father was disturbed too; being a man he was acting as though all was okay just to encourage me.
She took him to St Mary Hospital in Ukpokwu, Benue State, where they told her it was a condition called cleft lip. But there was nothing they could do. Even if she found a hospital to carry out the surgery, she could not afford it.
John could not suck properly, and that became a concern for her again.
“Most of the breast milk poured out of his mouth”, she said.
Daily, they had to deal with the silent stares and side talks trailing the birth of their son. They worried about how to make their son have a bright future, just like they had planned before his birth.
Their hope faded with each passing day until a family member heard on a radio station how a foundation — Smile Train Foundation, offers free cleft surgeries and comprehensive cleft care to patients.
Smile Train is a nonprofit organisation and charity providing corrective surgery for children with cleft lips and palates.
“It was my sister who heard about it, and said I can come for the surgery at the hospital here. Two days after she told me, I packed my things and came here from my place in Ukpokwu,” she said.
The doctors told her everything would be fine, but she found it hard to believe them.
“God used the Smile Train Foundation to save my family from this shame,” she said, lifting her hands in appreciation.
After the successful surgery, Ochegbe watched his son smiling, and she was no longer ashamed.
“This is the transformation we have always prayed for. I did not pay a dime for the surgery, even for the bed space, I didn’t pay for anything at all. My son is fine now,” she said smiling.
Clefts, a common birth defect
A professor of surgery and paediatric surgeon at the National Hospital, Abuja, Emmanuel Ameh, said clefts are a common birth defect.
According to him, a cleft lip affects usually the upper part of the lip where there is a physical split of the lip, while a cleft palate is when there is a split of opening in the roof of the mouth. A cleft can affect both males and females.
“In addition to the lip, the part of the gum where the front teeth come out from may be affected.
“For some children, the roof of the mouth is also affected. However, there are some children that only the roof of the mouth is affected, which is the cleft palate. For those children, outwardly they look normal but once they open their mouths, you will see a big scar on the roof of their mouths,” Ameh stated.
Causes and risk factors
Like most birth defects, cleft has multiple causes.
“It is usually an interaction of many factors occurring together,” Ameh explained. “However, a few of them occur as a result of genetic abnormality within the family but those are few. There are a few others, in addition to the cleft lip and palate, they have other birth defects also.”
The don said most birth defects occur during the first three months of pregnancy.
“Anything that causes an insult to the developing baby, especially in the first three months of pregnancy, can cause cleft lip, cleft palate, and other birth defects.
“There are thoughts that nutritional deficiency could cause it but studies are ongoing to ascertain the nutritional deficiency the mother could have that could lead to it,” he said.
Speaking on the risk factors, Ameh said it could be genetic.
“It could also result from alcohol intake during pregnancy. Some mothers take a lot of alcohol during the first three months of pregnancy and that could lead to it.
“In many parts of Africa, some mothers take a mixture of concoctions, and that could be a risk factor because it could affect the foetus.
“Usually, once a birth defect has occurred in a family, there is a chance that it can occur in another child,” he added.
Findings by the United States Centers for Disease Control and Prevention showed that women with diabetes diagnosed before pregnancy have an increased risk of having a child with a cleft lip with or without a cleft palate, compared to women who did not have diabetes.
“Women who used certain medicines to treat epilepsy, such as topiramate or valproic acid, during the first trimester (the first three months) of pregnancy have an increased risk of having a baby with cleft lip with or without cleft palate, compared to women who didn’t take these medicines,” the US CDC said.
Prevalence in Nigeria
The prevalence of cleft in Nigeria is 0.5 per 1000 live births, according to the Cleft Team Coordinator at the Aminu Kano Teaching Hospital, Kano, Prof. Akinwale Efunkoya.
“Nigeria and Africa tend to have lower cases of cleft than Asia and Caucasians. But then, even with the low figure, it turns out to be a lot of cleft cases,” Prof Efokoya, who is also a Consultant Maxillofacial at the hospital said.
Also, the Helpline Officer at Smile Train Nigeria, Paul Lobi said, “Every three minutes, a child is born with a cleft globally. The World Bank statistics show that over 6,000 children are born with cleft in Nigeria.
“Globally, 1 in every 700 babies are born with a cleft lip and, or palate.”
Joy restored
When Peace Nuhu delivered Jethro, her joy was cut short. He could not suck, and every day seemed a discovery of new challenges.
“I delivered him in a private hospital. Nobody knew what could be wrong, but I was told everything would be fine. The doctors and nurses said some children do not take breast milk immediately, and I should not worry too much,” she said.
Several days later, he still was not able to suck. so she bought a feeding bottle. That was when she knew she was in for something more serious than she thought.
“The milk was coming through his nose,” she said.
All the while, the 39-year-old dark-skinned indigene of Kaduna state did not bother to check his son’s mouth. She was told he would be fine, regardless.
“When he started tasting peppery foods, the pepper would go to his nose, if he bathes, he would sneeze consistently.
“He could not talk like every other child of his age, but they told her when he started going to school, he would talk like every other child of his age,” she added.
But afterward, nothing changed. The mother then registered him in a tailoring class. Occasionally, some of his peers made fun of him, but they soon learned that that was not going to change his endearing spirit.
“They were promoting him in school but I knew he wasn’t doing well academically, so I enrolled him to learn how to sew, at least if he can’t do well in school, he would do this better because he is a man.”
When Jethro clocked five, a relative who came to visit opened his mouth and found that there was a gap in the roof of his mouth.
Immediately, they rushed to a hospital in Zaria and were told it was a cleft palate. The mother didn’t know what it was. Then, the hospital booked the boy for surgery.
A few days before his surgery, he had an accident.
“The money we saved for the surgery was used to treat the injury he sustained from the accident,” she said.
“How could such a happen when we were close to getting a solution? We thought that was how God wanted it.”
They could no longer go to the hospital because the cost was high.
But luck shone on the Nuhus in October. They turned on the radio one morning and heard of the Smile Train Foundation’s free cleft surgeries.
Just like Echegbo, Nuhu travelled several kilometres from Kujama in Kaduna State to the NHA with her son.
A few days later, the gap in the roof of the mouth was closed and the muscles and the lining of the palate were rearranged, and the wound was closed with dissolvable stitches.
“The doctors said he would soon get used to speaking well with the help of a speech therapist. I am so happy. I didn’t pay for the surgery,” she said.
When asked how he felt after the surgery, the 12-year-old Jethro who sat beside his mother said, “l am better and happy. The doctors also said I would soon start talking well.” He said while taking his pap and milk.
For Jethro and his family, the surgery opened a new chapter in their lives. The boy has decided to become a doctor.
They are assured he will never be held back anymore
Cleft complications
Prof. Ameh said cleft lip affects the look of the affected child, hence, causing stigmatisation and psychological stress on the family.
“When the roof of the mouth is involved, the patient will not be able to feed properly, because it could come out through their nose and go through their lungs and cause chest infection, and some of it may go into the ear, and cause ear infection, and you may see some of them bringing out pus in the ear, and if that is not treated, they may end up going deaf.
“They may develop malnutrition which kills some of them, and severe anaemia when they are not getting enough nutrition and that could lead to death.
“Also, as a result of the opening of the roof of the mouth and the lip, muscle function may be decreased, which can lead to a delay in speech or abnormal speech,” he said.
Misconceptions
Lobi said cleft is associated with many misconceptions, myths, stigmatisation, and psychological trauma.
“Some say it is witchcraft, some say it is a punishment from the gods, some say it is a curse of the gods. But, these are not true,” he said.
Need for collaboration
Smile Train’s Vice-President and Regional Director for Africa, Nkeiruka Obi, attributed the transformative impact to strategic collaborations and investments in comprehensive cleft care, research, and innovation.
“If we are to truly achieve Universal Health Coverage, our focus must be set on lifting the burden that people living in low-resource settings often face due to inequitable access to the much-needed timely safe surgery and anaesthesia care,” she said.
Since its establishment in Nigeria in 2007, Lobi said the organisation has carried out over 37,000 successful free, and high-quality cleft surgeries.
In 2022, 4,464 safe and high-quality cleft surgeries were performed in Nigeria.
The foundation, across 34 states, offers cleft services to anyone born with cleft lip and/or palate irrespective of age.
Its local partners, numbering 54, also provide speech therapy, psychological support, nutritional services, orthodontics, and other essential forms of care to ensure that children with clefts have everything they need to not just live, but thrive.
Lobi also mentioned that since founded in 1999, Smile Train Foundation has carried out over 1.5 million free, safe, and high-quality cleft surgeries in over 90 countries.
“If the child is malnourished, the foundation pays for the nutritional care so that they can be healthy enough for the surgery. If there is a problem with their ears, that is also taken care of by the foundation,” Lobi said.
Preventing clefts, palate, other birth defects
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