…Many Babies with Cleft Die Before Accessing Care – Paediatric Surgeon
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 because often times parents even lose their children before they are able to access care.
Two months ago, this year, Blessing Emmanuel and her husband Emmanuel Josiah 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, that there are people doing it there, we should go there, that they will teach me on how to feed the baby,” said 34-year-old Blessing.
When Blessing first saw her child Purity and realised she had a cleft lip and cleft palate, she couldn’t control her emotions; she couldn’t hold the tears of agony that rolled down her cheeks uncontrollably.
“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 that were telling me that it does happen to children and they now referred us to National Hospital.
“I met my husband, I was still crying, he comforted me, told me he would get you the next phase as soon as we were out.”
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.
Blessing, the mother of two recounted the traumatic experience that she passed through with her husband as they spent all the money they had on diagnosis and attempts to treat Purity unknown to them that they were in the wrong ward.
The couple had never seen such birth defects before. They were worried, especially as their first child came without the defects. “because the same routine drugs I took for the first child is what I took for the second child, ” the cleft mother said. Inquiries were made from their families but all results showed that nobody from any of both families had ever had a cleft.
“So when we got there (National Hospital), 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.”
Committed to providing free and timely cleft care beyond surgery for babies born with Cleft, Smile Train, the world largest cleft-focused Non-Government Organisation (NGO), and its local partners 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.
According to Emily Manjeru, PR and Communications Manager of Smile Train Africa, so far, 30,000 patients have been treated in Nigeria since 2008 and the NGO has supported surgeries of over 1.5 million children in more than 70 countries over the last 20-plus years, with over 41 countries covered in Africa.
She said a child is born every three minutes worldwide with a cleft. Individuals of African descent have the lowest incidence of approximately 1 in 1,200 births. Cleft patients find it difficult to speak, breathe, associate or thrive in society.
Emily said poor people are mostly affected because of difficulty in accessing free, safe, timely and comprehensive cleft care which Smile Train provides.
“Blessing told me she overheard people talking about Smile Train. I told her no problem, when I get home I will do my homework as a father to see how far, ” Emmanuel, father of the cleft baby said.
Worried by his daughter’s situation Emmanuel established communication with Smiles
Train.
“I was making research, studying about Smile Train, there was a place they said I should put my email and phone number and I did that. To my shock, the following morning somebody just called me from Smile Train that are you so so person, that you are trying to reach us, I said yes.
“They asked me where I was, and I said I was in National Hospital. When I told them the ward I was in, they were furious that I was in the wrong ward and they told the nurses to transfer us to the ward where Smile is. I told my wife, I said there’s hope, somebody has called from Smile Train.
“Not long from that time, about two hours later, another man called me again that they heard my situation, that I should not worry, ” a more relieved Emmanuel said.
On his wife’s comments on the resources spent in the wrong ward of the National Hospital Abuja, 42-year-old Emmanuel said, “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.
“Now that we are waiting for Purity’s defect to get repaired free of charge, it is like removing a burden out of my shoulder. As a man, at least I can sleep with two eyes closed. No matter what, it is a situation that they can handle, it is not going to make me run around searching for funds so far it is free of charge. That alone is hope for us. At least that can even keep the family moving, ” Emmanuel said.
Emmanuel thinks that if there’s a notice board for Smile Train and people who can educate parents of children with cleft, it would help address the effects of the communication gap.
Blessing took care of Purity and avoided the public because of the stigmatisation she envisaged would come from neighbors. She would not let anybody come close to her child because “her mouth was open, and she could get infected.
“I was happy when I knew Smile Train Could handle it, I was relieved, ” Blessing said, wearing a nerve-calming smile.
Babies with clefts are vulnerable to malnutrition, even when food supply is abundant. This is because clefts affect their ability to suck, often making it very difficult to breast- or bottle-feed.
In view of the foregoing, Smile Train on September 22, 2021 officially announced its five-year commitment to scaling its investment in global nutrition. The nutrition programs cover costs of feeding and nutrition specialists; the programmes support the local purchase of vital feeding and nutrition supplies such as breast milk pumps, nutrition supplements, and feeding tools; and finally, the programmes support the ongoing communication and travel of patient families and feeding and nutrition specialists so those most vulnerable can continue to receive care until they are healthy enough for surgery.
The programme target is that by the end of 2026, through awareness campaigns, advocacy, program expansion, partnerships, training, and education of health workers, Smile Train’s increased investment in nutrition will result in more than one million mothers and children benefiting from cleft-specific feeding counseling; more than 55,000 child malnutrition cases averted; over 40,000 educational opportunities on cleft feeding and nutrition; more than 1,000 partner hospitals across over 70 countries empowered to offer nutrition services to every mother and child pair affected by cleft;
“Over 250 partner hospitals in an organised network offering advanced nutritional care for malnourished children affected by clefts; a 40percent reduction of the number of stunted children undergoing cleft surgery
Professor Emmanuel Ameh, the Chief Consultant Paediatric Surgeon at National Hospital Abuja, which is a Smile Train’s partner hospital where Orofacial Cleft repairs are done through surgeries, called on government to scale up efforts in funding, legislation, policy-making, training and other measures to enable cleft babies have adequate access to surgical care.
According to experts, the importance of policy making can not be overemphasised because cleft babies who encounter difficulty in breathing sometimes don’t make it to tertiary health institutions where cleft care is given.
According to Ameh, “What we are trying to do at the moment knowing that most of the women give birth at home and primary healthcare centres is to train the staff; the nurses, the community health officers and even the traditional birth attendants who take the deliveries at home on how they will know 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.”
The Federal Government already oversees its hospitals, for this reason, the effort has to be more in terms of policy making because “the State government has responsibilities over the state hospitals and primary healthcare in the states so even if you want to do anything at the primary healthcare level you still have to go through the state. So legislation needs to happen at the state level to ensure that state governments are investing in care and training and basic equipment at those levels.
He decried the devastating effects of brain drain on the medical sector, evident in the scarcity of medical experts to handle the repair of clefts in hospitals that are within 2 hours of the local areas where most cleft babies are born.
“We are presently doing training on research for surgery 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.
“Smile Train has established a helpline. We also train them, once you have a cleft patient, call that helpline because they know where all the cleft experts are located. Those are some of the things we’re doing at the moment to prevent some of those situations.”
There is a belief among policy makers that surgeries are expensive, this is why there isn’t enough advocacy by policy makers. But government will actually save money each time a surgery is carried out, compared to the cost of treating diseases.
This is so because most surgical procedures are one-off, whereas for a disease, it can take a long time and government ends up spending more. According to Professor Ameh, the cost of giving care to a HIV/AIDS patient is higher than the cost of repairing clefts which Smile Train has been providing tirelessly, free of charge.
“The funding we are talking about is not a lot, we need the policy to make sure that this kind of care is happening at this level – basic life support, basic care that will make sure that the child will stay alive. Even the development partners will come in and say ok, actually they have made it a policy, so let’s go and help them implement it.
