How cleft surgery unites families, saves lives

By Risikat Ramoni

The birth of a child with cleft lip and palate in Nigeria is often associated with evil. The children are stigmatized and left to die, or abandoned to face lifelong problems. Daily Trust reports on how the provision of free surgical treatment by Smile Train is changing the stories of the affected children and their families.

Tomiwa Ade was surprised and sad when she was presented with her newborn twins. The two girls both had cleft lip and cleft palate at birth.

When her husband saw the babies, he stopped giving her feeding money despite knowing she relied solely on him for survival. She was not working. Everyone she knew deserted her.

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Sometimes, her mother-in-law will send people to her house to mock her, saying she must have done something evil which was why she gave birth to children with cleft lip and palate.

Life was not easy for her as caring for the twins became a difficult task. The babies did not eat well, which left Mrs Ade frustrated and stressed up always. She was referred to the Lagos University Teaching Hospital (LUTH) where her twins were attended to.

Smile Train – a non-government cleft-focused organization, picked up the bill for the twins. The organisation has been footing medical bills for children undergoing surgery for cleft lip and palate – and changing the stories of families.

Between 2007 and October this year, Smile Train has foot the bill for some 31,000 successful cleft surgeries, giving families a reason to stay united.

Due to a lack of feeding allowance, the twins were malnourished and so were placed on a nutrition programme. When they became healthier, they had their free surgeries. After they went back home, their father got wind of the information and upon seeing the changes in the children, he returned home. The family is now together.

“The main impact of our work in the lives of families who had issues is that after surgery, families are brought together,” says the Senior Program Manager of Smile Train West Africa, Victoria Awazie. 

“If it is a family that the father has walked away from, when he sees the repairs, he comes back to the family. It reunites husband and wife as well as their relatives.” 

According to a 2022 CDC statistics, cleft lip and palate is one of the 10 most common birth defects in the world. The incidence of cleft lip and palate across the world is generally accepted to be one in 1,000 births and it is more common in males than females. 

In an article titled, epidemiology of cleft lip and palate in Nigeria: a data-based study published in the international journal of scientific research in 2021, the most common type is cleft lip palate (61.4 per cent) followed by cleft palate (20.7 per cent) while the least common is cleft lip (17.9 per cent).

A cleft lip is an opening in the upper lip; a cleft palate is an opening in the roof of the mouth. In both cases, an opening is formed, owing to the fact that the facial structure or roof of the mouth does not close completely during development. A child can be born with only cleft lips or palate or both of these conditions.

Cleft in Nigeria

In Nigeria, the birth of a child with cleft is attributed to evil, black magic and curse. Many abandon such kids while those who chose to accept the babies end up being rebuked by spouse, families, and friends.

There are incidences where a blissful marriage suddenly turned sour when a child with cleft is born as the husband stops caring and being supportive. 

Augustina Wigwe has lived that life. The joy of having her first child in 2013 was cut short when the baby presented with a cut in the lips and throat. She could not take the child out or show everyone around she had given birth. With counselling, a corrective surgery was done. It was her first, and she had the support of her husband, family and friends.

Her second birth had no medical problems. But the third did: the baby had both cleft lip and palate, and Down’s Syndrome. The support vanished. Her marriage ended. Now, she is left to care for three children alone.

The after-effect

“I have heard of cases, and I even have some of them in my clinic where the family becomes separated due to the baby who has cleft,” says Prof Mobolanle Ogunlewe, a surgeon at the Lagos University Teaching Hospital (LUTH) and the first woman to become an oral and maxillofacial surgeon in Nigeria.

“The husband sometimes leaves the woman or he may have nothing to do with the child who has cleft, thereby leaving only the woman to care for the child.”

Due to the effect of abandonment by their loved ones which leads to psychological disturbance, some women are believed to get rid of their cleft babies. There are reported cases of the sudden death of such children. 

“There are no traces of murder of cleft children, but one clear thing is that when a mother who has started coming to clinic suddenly stops, we will call her to inquire what happened and she will say, ‘The child has gone back to where he or she came from.’ Some abandon the kids somewhere, some by the riverside so that the water can take the child away,” says Prof Ogunlewe.

She recounts a case: a child with cleft taken from his mother, tied to a tree and left there to die.

“The child was eventually rescued, and my team provided cleft surgery for the patient. Many parents hide their children at home rather than face community accusations; this isolation hurts the children psychologically,” she recalls.

Affordability

The rich who gave birth to cleft babies may not have any problem as they could easily afford treatment. However, the indigent poor parents with cleft babies cannot afford the treatment as the cost of treating lip, palate or both don’t come cheap.

Prof Ogunlewe said surgery cost N350,000 aside other professional treatment the child will go through after surgery such as a speech therapy to manage speech problem, nutrition to assist with feeding, orthodontics to arrange the teeth and jaws, and seeing the Ear, Nose and Throat (ENT) specialist if it involves palate. 

In some other parts of the world, without health insurance, cleft lip and/or palate surgery typically costs $5,000 to $10,000 or more per surgery; if the child has both cleft lip and cleft palate, two surgeries typically are required for a total of $10,000 to $20,000.

Cleft surgery and management are not on the national health insurance scheme, hence, only a few people can afford it. 

Beyond closing the gap

“Cleft requires comprehensive care. We provide surgery and post-surgery treatment for free,” Awazie of Smile Train said.

“The after-surgery management by different experts makes the cleft patient live a full life. Some of them, after surgery, still have speech impediments, many of them cannot speak and this still causes community stigmatization to continue.”

“After the surgery, the parents usually give an account of how their life has changed, how they now live a normal life and how they can now carry the baby out. They are always elated and they express it sometimes through tears of joy when the baby’s lip or palate is repaired,” Prof Ogunlewe relates.

Despite having presence in 45 hospitals across Nigeria including LUTH, Lagos State University Teaching Hospital (LASUTH) and Grandville Medical and Laser clinic in Lagos, the intervention still has its challenges. 

There are still many families in both rural and urban communities who are yet to be privileged to have their cleft gap closed.

Although many families got the information about the intervention through referrals using the Cleft Helpline, children are still being hidden and families are still becoming separated due to the birth of a baby born with cleft.

The helpline officer of Smile Train in Nigeria, Paul Lobi, in his contribution indicates the people who actually need the services do not have information about the treatment centres.

Apart from this, “Culture and religion prevents people born with cleft to access treatment even when they are told it’s free in some states in Nigeria,” Lobi adds. 

This piece is with support from the Solutions Journalism Network and Nigeria Health Watch