…Cleft Babies In Rural Areas Risk Death Before Accessing Care
By Progress Godfrey
After the rigours of pregnancy and childbirth, the height of fulfillment for parents is to see their child and find reasons to smile and say, “oh thank God,” but the reverse is the case sometimes in Nigeria, especially in the rural areas where patients even lose their lives before they are able to access care.
Two months ago, Blessing Emmanuel and her husband Emmanuel Josiah, a couple from Edo state resident in Abuja narrated a story of how it took them two weeks before they accessed care for their daughter Purity Emmanuel, a baby born with a Cleft Lip and a Cleft Palate.
“They referred us to National Hospital from Kubwa General Hospital; they said people are doing it there, we should go there, that they will teach me how to feed the baby,” said 34-year-old Blessing.
Puzzling Reactions
The couple had never seen such birth defects before. They were worried, especially as their first child came without defects. Inquiries were made from their families but all results showed that nobody from any of both families had ever had a cleft.
When Blessing first saw her child Purity and realised she had clefts she couldn’t control her emotions; she couldn’t hold the tears of agony that rolled down her cheeks uncontrollably.
She said, “At first when I saw her after I gave birth to her, I started crying because I had never seen such before, it was those nurses around the hospital that were telling me that it does happen to children.
“I met my husband, I was still crying, he comforted me and he told me that everything would be fine.”
“Oh that is the family! ” said Dr Amina Abubakar, a Consultant Surgeon at the University of Abuja Teaching Hospital, Abuja as she introduced me to 17-year-old Blessing Moses, a mother of 4 children from Mutum Biyu in Taraba State whose child Nne Moses was born with a left lip (without a cleft palate). Blessing was accompanied by her husband’s relative David, aged 42 years.
David interpreted her story as she narrated to him in their local dialect. The mother of 4 was traumatised – why would the defect happen to her 4th child Nne? What must have gone wrong? Nobody from Moses’ family ever had a cleft. These questions heightened her tension, but she hoped for God to intervene.
Neighbours all came in turns, many in dismay, to watch Nne’s cleft lip, a condition that denied her of wearing a beautiful smile.
Orofacial Clefts
Centre for Disease Control, an agency of Nigeria’s Federal Ministry of Health says Cleft Lip and Cleft Palate are birth defects that occur when a baby’s lip or mouth does not form properly during pregnancy. The Agency adds that Cleft lip with or without cleft palate, and cleft palate alone, are collectively referred to as orofacial clefts. Clefts can involve the lip and/or the roof of the mouth (palate).
The cause of cleft lip and palate is said to be majorly genetic predisposition. The World Health Organisation, WHO however explains that poor maternal nutrition, tobacco consumption, alcohol and obesity during pregnancy also play a role.
The world over, a child is born every 3 minutes with a cleft. According to WHO, Orofacial clefts are the most common craniofacial birth defects and have a global prevalence of between 1 in 1000-1500 births with wide variation in different studies and populations.
Data from Smile Train, the World’s largest Cleft-focused organisation says that the highest cleft incidences are among Asians (approximately 1 in 500 births). Caucasians have an average incidence of 1 in 700 births, and individuals of African descent have the lowest incidence of approximately 1 in 1,200 births. At least 32,000 children are born with a cleft lip/palate annually in Africa and Nigeria accounts for 6,186.
Babies with clefts are vulnerable to malnutrition, even when the food supply is abundant. This is because clefts affect their ability to suck, often making it very difficult to breast- or bottle-feed them. They also have challenges in speaking, breathing, going to school and making friends, and generally, they lack the ability to thrive in society.
At first, 17-year-old Blessing grappled with accepting the reality that befell her – Nne’s inability to suck, but sooner the mother and child figured out a way to survive.
Poverty, Lack Of Awareness
The World Bank projected that the number of poor Nigerians would hit 95.1 million in 2022, this means that almost half of the country’s estimated population of about 214 million are at risk, especially those in the rural areas.
“The challenge is this; I wish I had better information, I wouldn’t have spent all the money I spent. I don’t think I would have spent it.
“If we did not spend two weeks in vain, Purity should be using breast pumps by now, but because of lack of adequate information, it cost us more money, to the extent I even started borrowing, ” said Emmanuel Josiah, father of Purity.
Nne was already 8 months old but her cleft lip which was supposed to have been treated when she was 3 months had just been booked for surgery.
To cushion the effects of lack of awareness, Smile Train offers its partners a range of clinical training opportunities and resources in surgery, anesthesia, nursing, and comprehensive cleft care.
Medical experts in Nigeria are putting all hands on deck to ensure that awareness gets to the midwives, Nurses and other caregivers. Even the traditional birth attendants who take the deliveries at home are not left out; “We are training them on how to identify that a child has a cleft and if the child has a cleft, how they will identify those at risk of having difficulty in breathing, then the basic things they can to make sure that the child stays alive before he/she can get to the hospital where they can get care,” said Professor Emmanuel Ameh, the Chief Consultant Paediatric Surgeon at National Hospital Abuja,
Cultural Practices, Myths Hinder Access To Quality Care
In some parts of Nigeria, patients are isolated and not allowed to receive treatment for beliefs that they are cursed. Others get banished, abused and stigmatised, and sometimes they are starved to death.
Blessing Emmanuel avoided public exposure while taking care of Purity because of the stigmatisation she envisaged would come from neighbours. She wouldn’t let anybody come close to her child because her mouth is open and she could get infected.
Getting Adequate Care
On arrival at the National Hospital, the nurses began to subject Purity to several diagnoses, “they started doing all manner of tests; we were in another department.
“We were there for like two weeks, nothing was coming up until I heard people discussing about Smile Train,” said Blessing Emmanuel.
Her Husband Emmanuel Josiah, having reached out to the NGO, got a call the next day promising to come to his aid. It was at this point further inquiries revealed that the patient had spent 2 weeks in the wrong ward of the Hospital.
For some patients, for several reasons, they are unable to access care until they are grown adults. Others get theirs after months of searching for help. Emmanuel thinks that if there’s a notice board it would help cushion the effects of lack of access to quality care.
For 17-year-old Blessing Moses, she had to face the trauma for 7 months until a certain cleft mother referred her to Smile Train on 1st October. The child did not need to go through the Nutrition Programs as she was healthy and not underweight. “She’s healthy and is ready for surgery, ” Dr Amina had said.
Orofacial Clefts are repairable by surgery. Dr Amina who has repaired over 300 clefts spends about an hour but notes that time may vary depending on the surgeon. She says surgeries record on average, an 80 per cent success.
Smile Train supports free surgeries for cleft patients and comprehensive cleft care in more than 41 African Countries and has supported safe surgeries for over 1.5 million children in more than 70 countries worldwide, with over 30,000 patients treated in Nigeria over the last 20-plus years.
Apart from surgery, patients may need essential care, such as speech therapy, emotional support, nutrition services, and orthodontic care, to ensure that children have the opportunity to thrive to their full potential.
Data reveals that the cost of repairing a cleft through surgery is about 250 US Dollars but more is required depending on other essential care needed.
Effects Of Medical Brain Drain On Access To Quality Cleft Care In Nigeria
The Nigerian Medical Association (NMA), recently revealed that about 10, 296 doctors now practice in the United Kingdom, making Nigerians the third-highest foreign doctors in that country.
Many cleft patients require specialised care but the devastating effects of brain drain on the health sector are evident in the scarcity of medical experts to handle the repair of clefts in hospitals, except those that are within the cities, 2 hours from the rural areas where most cleft babies are born.
“We are presently doing a training on research for surgeons and there is an Anaesthetist there who came from one of the states. He said he is the only Anaesthetist in the whole of that state and he is in the capital. So it means cleft treatment cannot happen in the whole of the state except in the capital, in the hospital where he is. It’s that bad, ” Professor Ameh lamented
