How SMILE Train is changing cleft, palate narrative in Nigeria

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Overwhelmed with joy, my mother in-law left Koton-Karfi in Kogi that morning and made her way to the Federal Capital Territory (FCT), Abuja on hearing the cheering news of the birth of my baby.

“Mrs Bilikisu Kujarah, a local birth attendant helped me delivered my baby at home. As she was cleaning the baby she noticed a cut on the baby’s lip.

“Appears your baby has a birth defect known as” cleft lip”, recalled Habiba Nasir, a 29- year old housewife,

Though the birth attendant saw it as a birth defect, to her mother in-law, it is a manifestation of the anger of god towards the family.

“She said it was a curse from the gods and blamed me for bringing shame to the family.

“The gods are angry and this baby will bring shame and disgrace to this home “she said.

The cleft lip and palate are facial and oral malformations with appearances of birth defects that occur very early in pregnancy while the baby is developing in the womb.

With days turning into weeks and months of endless search for solutions, Nasir, a first time mother explained how her mother in-law fed her baby with herbs.

“My mother in law started feeding our four month old baby with some local herbs and spices because she could no longer withstand our thoughts of going hospital for treatment or any form of orthodox medical solutions.

“She said bringing the baby outside will cause more troubles for the family as our baby may die in the process.

“We were referred to various health facilities in Agwandodo area of Gwagwalada, FCT, where we reside but there was little we could do because of my mother in-law, “she said.

As the baby was treated on concoction, the rumour of the birth of this ‘strange girl’ was spreading.

“It was not until two years later when my mother-law returned home that my husband and I took the baby to the hospital.

“At the pediatric ward, we were referred to a matron, who explained the condition to us’’, Nasir told this writer.

Mrs Opara Ngozi, the matron and specialist at the National Hospital, in Abuja, explained to us how our baby can feed better and become healthier and urged us to approach the hospital for a cleft palate lip surgery.

According to Smile Train, the world’s largest cleft charity organisation, one in 700 children are born with cleft globally. Everyday 540 babies are born with a cleft.

In Africa, no fewer than 32,000 children are born with cleft annually, with about 6,186 of them, representing 20 per cent of them in Nigeria.

However, a high proportion of patients did not have access to early treatment due to ignorance or financial constraints.

Children born with clefts have severe speech impairments which makes them subject to stigmatization in the society. They also they also have difficulties with breathing, breastfeeding, and will usually have a feeding pattern difficult to maintain.

Globally, cleft lip is one of the most common congenital abnormalities and has a birth prevalence rate ranging from 1 in 1000 births to 2.69 in 1000 births amongst different parts of the world.

Over the past 20 years, Smile Train has transformed the lives of no fewer than 1.5 million children in Africa.

Awazie Victoria ,Senior Program Manager, West Africa told NAN that Smile Train has sponsored various trainings for surgeons, crested a lot of awareness on the condition while providing free surgeries equally around Africa.

“Parents should seek medical attention at the first sight of Cleft appearances, adding that caregivers should be more committed and dedicated to ensure babies born with Cleft are adequately nourished.

“Today, Smile Train has performed over 32,150 surgeries for children and adults born with cleft lips and palate in the east, west, north and south of the nation.”She said.

“There is still no concrete explanation to cleft development medically but it is more associated with abnormal formations and interplay between genetic and environmental factors including, poor nutrition of the mother and there are also claims of heredity.

“Dr Amina Abubakar,a Consultant Plastic Surgeon at the University of Abuja Teaching Hospital, Gwagwalada, FCT said during a workshop in Abuja.

She said Smile Train is doing a lot to change the stories and myths around the condition by ensuring adequate awareness about the disorder.

“Smile train has provided free trainings in Nigeria, out of the surgeries done ,we have never lost one baby, we ensure that these babies are well nourished before the surgical procedures”, she said.

Before Smile Train started cleft awareness campaign in Africa, most cases were left untreated due to ignorance and degrading beliefs in various cultures and communities and also due to the high cost of surgery.

Abubakar said the organisation has partners with hospitals in different states and countries to offer free treatment for both adults and children born with cleft lip and palate in over 90 countries globally.

In Gwagwalada and Abuja environs today the story is changing as more expectant mothers and midwives in several hospitals are learning about the dysfunctional birth condition.

Rachel Akor , an 18 year- old girl said that she had just undergone a successful surgery at the General Hospital, Gwagwalada.

Following the surgery she is more confident to speak because in the past she spoke covering her mouth and was unable to smile.

“My friends would laugh when I open my mouth to talk and many in my neighborhood will come close to me. At school I found it difficult to cope and cried everything I was jeered at.

“Now am very happy. I can now only talk perfectly. I can smile, laugh and play freely with my friends at school,” she said.

Smile Train is the World’s largest cleft-focused organisation which provides training, funding and resources to empower local medical professionals in over 70 countries.

The resources are meant to provide 100 per cent free, safe, timely and comprehensive cleft surgeries and other forms of essential cleft care in their own communities.

It has performed over 33,000 surgeries for children and adults born with cleft lips and palate across the country, thereby changing the narrative and bringing back smiles to faces of families and friends of cleft lip persons.

The average cost for a cleft lip reconstructive surgery is about N150,000.

Smile Train is re-defining this condition, re-writing mythical stories around cleft, collaborating with the government to ensure that no child with cleft and palate lip unattended to.

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