The birth of a new-born often brings joy to the mother ; but, that was not the case for Blessing Emmanuel who burst into tears after she beheld the baby she had just been delivered of at the Kubwa General Hospital, Abuja. She had never seen a baby born with a cleft lip and palate in her entire life, and she never imagined her baby girl would look like that.
Blessing’s baby had a split at the roof of her mouth. She left the labour room devastated, curious and desperate for answers; but most of the medical personnel on duty also found the situation strange which left her feeling hopeless.
“When I saw her after I gave birth to her, I started crying because I have not seen such before. I was surprised because it is the same drugs that I took for my first child that I took for the second child. Nobody in my family have had something like this before,” she cried.
Blessing kept her daughter who was named Purity Emmanuel away from people. She said she did not want her neighbours to see the state of her child, especially due to the opening in her mouth, to prevent infection.
“I don’t bring my child out for neighbours to see. I am keeping her. I don’t want anybody to be see her,” Blessing said.
Her husband, Josiah Emmanuel said he was equally devastated and traumatised. “It was a shock and a trauma to the family when the child was born. I just saw my wife crying out of the labour room, I got scared , she just told me to go and see my baby. When nurse came out with the baby, I just had to take my stand as a man, and be strong and console my wife,” he said.
“I am 42 years now, but since I was born, I have never by chance seen such incidence , it was my first time experiencing it, I have never heard about it, it is really a trauma to us,” he cried.
Emmanuel said medical practitioners referred him to the national hospital where he incurred huge expenses running tests. But when it seemed like all hope was lost, his wife hinted about a Non-governmental organisation called Smile Train which offers free cleft care and surgery.
“We were in the hospital and the bills was getting heavy on me. After staying about two weeks, my wife told me about Smile Train. So I went home and researched about to them, there was a place on their site where they requested for my email and name. To my shock, someone called me the following morning. Another person called me again and told me not to worry. I felt like a burden ha been lifted off my soldier, and I could sleep with my two eyes closed. The fact that it is free of charge and I don’t have to run around sourcing for funds alone is good for us. We had hope that something good can be done about this situation,” Emmanuel explained.
Indeed, hope, joy was restored to purity Emmanuel’s parents when they found out that her condition can be corrected. Like Purity, thousands of children are smiling again and living their normal lives due to the interventions of the non-governmental organisation. But, many more children are being denied care due to prevailing myths and misconceptions around cleft largely fuelled by low awarness around cleft. However, Smile Train is intensifying collaboration with stakeholders to improve access to care.
Cleft lip and palate are birth defects that occur when a baby’s lip or mouth do not form properly during pregnancy. There are openings or splits in the roof of the mouth and/or lip of the baby.
Cleft conditions comes with speech difficulty, feeding difficulty, hearing and breathing issues and inability to live among others. If not corrected, children born with cleft may live with this difficulty for the rest of their lives.
The cause of cleft is still yet to be known, but research is ongoing to unravel it. However, some of the identified causes, according to experts are related to genetics and environmental factors such as malnutrition, smoking and intake of alcohol by mothers during pregnancy.
The World Health Organization (WHO) estimates that over 6,180 children are born with cleft lips in Nigeria. Globally, a child is born with Cleft Lip, and/ or Palate, according to statistics from Smile Train; and in Africa over 32,000 children are born with the condition.
Amid this prevalence, there are persisting myths, beliefs that hinder sufferers form accessing the critical care they need. According to Smile Train, the biggest challenge facing cleft treatment is the lack of awareness leading to stigma, unfounded myths and misinformation against innocent children.
The social rejection and stigma person born with cleft disadvantages them in education, employment, marriage, among others. Some communities in Nigeria conclude that people with the condition are cursed.
Amina Abubakar, a consultant plastic surgeon speaking at a two-day media workshop organised by Smile Train in Abuja revealed cases where cleft patients are treated like slaves and restricted from accessing medical care for beliefs that they are cursed, which has instigated cultural practices like stigmatisation, banishment, abuse, and in some cases, starvation to death.
Abubakar, who have 14 years experience in cleft surgery, however reiterated that cleft lip and palate is only a medical condition and not a curse or witchcraft. She said a child with the condition can be treated perfectly through surgeries when they clock three months old. She also noted that almost 100 percent success stories have been recorded so far.
Smile Train, the largest cleft-focused organisation the organization has treated over 30,000 people with such cleft lip and/or palate in Nigeria, according to Public relations and communications manager at Smile Train, Emily Manjeru.
Speaking at the workshop on Abuja, Manjeru said the organisation provides training, funding and resources to empower local medical professionals in over 70 countries to provide 100 percent free, safe, timely and comprehensive cleft surgeries and other forms of essential cleft care in their own communities.
“Here in Nigeria I think we have treated over 30,000 patients since we started our program in 2008,” she said.
Globally, Smile train has successfully carried out 1.5 million cleft surgeries across more than 90 countries since it was founded in 1999. Manjeru further informed that the organisation have trained over 2,100 medical professionals on how to perform cleft surgeries.
To intensify awareness and help more children access the critical care they need, the organisation organised a nationwide media workshop, and reiterated its readiness to create more awareness around cleft and the availability of free treatment to help more children access care.
The Organisation also reiterated commitment to training and educating more medical personnel, who would serve as referral agents to victims of cleft.
Adaobi Onyechi, a public health expert in an interview with Global Sentinel, stressed that awareness was very key in addressing any health scourge in Nigeria. She, therefore urged the media and other relevant stakeholders to intensify efforts in informing and educating citizens, especially in communities.