The Sunday Mail
OROFACIAL clefts (when tissues of the mouth do not form properly) present a significant medical burden in developing countries, as about 15 000 patients in Africa are treated for clefts every year. A cleft lip is a birth defect which usually develops in an unborn child. Due to ignorance about this condition, Smile Train, a non-governmental organisation which funds free cleft surgeries, is stepping up efforts to raise awareness about the condition. The Sunday Mail’s Gender and Community Editor Fatima Bulla-Musakwa spoke to Smile Train’s programme manager for Southern Africa Mrs Sibusisiwe Shyna Yona.
Q: What is a cleft and how does it develop?
A: A cleft is a birth defect, but we are slowly doing away with the word defect. We are looking at it as a birth difference that prevents the mouth from forming properly. The fusion of the mouth, especially the upper lip, sometimes does not go according to nature’s plan. There are some birth differences that cannot be treated but a cleft is treatable. The surgery is a bit complex and sometimes it has to be done in stages depending on the type of cleft.
There are different types of clefts. Some are unilateral clefts, which appear on one side of the upper lip. Sometimes the unilateral lip appears on the right side of the mouth but it is only the lip itself that is cleft. And then sometimes it will appear on one side of your mouth but it is the lip, the gum and inside of your mouth, in what is called the palate. So there are complete and incomplete clefts.
Complete clefts are difficult to operate on but incomplete clefts are much easier because surgery can take just 45 minutes. Children with a cleft palate always find it difficult to grow and face malnutrition because food comes out of the nose and does not go into the stomach.
Sometimes you can find a child with a combination of cleft lip and cleft palate. It can be a unilateral cleft present with unilateral palate. Or it could be a unilateral palate cleft with a bilateral lip. Clefts are more common in boys than in girls.
Q: Is there a reason why clefts are common in boys than in girls?
A: There is no real explanation, so researchers think that some of the answers can be found in genetics, but the studies that are being done now have not gotten to that stage. But one effective preventative method is taking folic acid (a B vitamin) during pregnancy.
So women are encouraged to take folic acid before they get pregnant and throughout the duration of the pregnancy.
Q: You highlighted that if not corrected, clefts can have other effects on the body of the child. What are these?
A: Children with cleft may look younger because of stunted growth. It’s because the food constantly comes out of the nose and the body does not get nourished. Most of the time this happens to children with cleft palates.
When a child’s cleft lip or palate is not repaired on time it can affect their speech because as human beings, we make certain sounds with our hard palate and soft palate. So if there is an opening there, it will create nasalisation, which occurs when somebody is speaking but you cannot hear what they are saying.
Affected children find it very hard to go to school or participate in class discussions because people cannot hear what they are saying. This means such children can become withdrawn socially and they will not reach their full potential.
Children that do not get treatment for a cleft lip on time can die. Such children are prone to ear infections or loss of hearing.
Q: How prevalent is cleft palate in Zimbabwe?
A: Research says we have about 250 live births of cleft lip and palate every year. So these conditions come from the periphery of the country because most people don’t get access to information and health services. Because of the myths surrounding clefts — one of them which is that it is an act of God — they tend to stay at home without knowing that they can get treatment.
Q: How many surgeries have you conducted in Zimbabwe so far?
A: In Zimbabwe we have been doing an average of 50 to 100 surgeries per year since 2011. This year, the activities that we had planned didn’t go well because of Covid-19.
But we did give assistance to our partner hospitals. We supplied PPEs at Harare Hospital (now Sally Mugabe Hospital) and managed to identify two Zimbabwean doctors for training in the Masters in Plastic Surgery programme at the University of Nairobi (Kenya).
We did a workshop on speech therapy to empower speech therapists and rehabilitation technicians. We continue to engage our stakeholders who include journalists — a critical partner when it comes to information sharing. One of our plans for 2020 going into 2021 is to increase awareness on clefts so that people are more informed.
Q: Have you been able to forge any partnerships with local health institutions?
A: We are in the process of signing a Memorandum of Understanding (MoU) with the Ministry of Health and Child Care and with the Rehabilitation School in Marondera so that we can provide more training.
We want to embed our programmes more meaningfully into the health system. Our job is not just to treat clefts and leave it like that.
We want to find where we fit in, in the agenda of the health ministry to strengthen health systems.
In the future, we will be partnering academic institutions to increase research.
We have standing partnerships with Harare Hospital (Sally Mugabe Hospital), City Medical, Chitungwiza South Medical and Mbuya Dorcas institutions.
We do know patients’ challenges of accessing information and care, so we are branching out looking for partnerships with other hospitals that are located in the provinces outside Harare.
Q: What challenges do you face in reaching out to communities who need these surgeries in Africa?
A: Some barriers are disturbing because of ostracising people with clefts. We have seen in some communities that mothers who give birth to cleft patients are called witches and adulteresses. A lot of people use this kind of language because it is so unbelievable to them that somebody can look like that. So at the end of the day, this is what we want to demystify.
Q: How does cleft affect women and children if it goes uncorrected?
A: Mothers struggle to take care of those children because it is a tall order for an infant to develop into a toddler. Imagine you are trying to feed your child and three-quarters of what you are feeding comes out through the nose. This requires a lot of effort, so it is the job of more than one mother.
Sometimes you need to employ certain things to be able to feed the children. There are special cleft bottles which people may not have access to because of the cost. So cleft babies really need attention and a lot of patience because they cry more than children without cleft.
Children who are born with clefts miss out on certain basic opportunities that any child in Zimbabwe has, like going to school. Some, when they are adults, might not get married because people find them strange, and they may remain isolated. Some families are ashamed of this condition.
Q: How easy can a cleft condition be corrected?
A: Remember, I talked about an incomplete cleft, which is a cleft lip. This type of surgery can take as little as 45 minutes with a skilled surgeon. The doctors we have here in Zimbabwe who work with Smile Train are skilled and can do this. Or they can contact us directly because this way we can be able to assist them with some of the things needed before surgery. We can help them with nutrition advice, counselling and help them prepare for the surgery so that there are no problems like underweight children. We do not take children who are below five kilogrammes and could have other infections.
Q: Your parting shot?
A: We are happy working in Zimbabwe and as a Zimbabwean myself I am proud to be helping address this health issue. I want to encourage the public to really understand that a cleft is treatable.
Whatever they have been told which sounds negative and makes them regret having those children is untrue. They should bring those children to be treated. I would like to urge the public to really understand such health conditions and not pay attention to speculative information.