Busting Myths About Cleft
Fake news gets debunked with evidence based facts, research and studies, and it's now time to apply the same approach to bust myths about cleft.
The month of July is Cleft and Craniofacial Awareness Month, National Cleft and Craniofacial Awareness and Prevention Month – July 2024. It's important to give a heads up and debunk myths about cleft so that (a patient's) self-imposed stigma, social isolation, lack of self confidence, family embarrassment, infanticide, and so on, gets thrown out like garbage.
Cleft does not define a person, it's a treatable medical condition, and a number of below public figures, from actors to athletes, have become leaders in their respective sectors.
Obviously, not all are destined to be public figures, but those children with cleft are heroes in their/our stories, and we want to help them achieve and live a normal life.
This blog is broken down to three areas:
Busting Myths
Cleft is a developing country phenomenon
Myth:
Cleft is a developing country curse.
Reality:
Cleft, like climate change, neither recognizes nor respects borders, as babies are born with cleft. ‘...it is estimated that 1 in 1,000 babies are born with a cleft each year. Cleft can be present either as cleft lip or palate or a combination of both…Cleft lip and palate have no single cause. Further, environmental and genetic factors play a role in causing a cleft.’ Cleft Lip and Palate: Myths and Facts - 1SpecialPlace.
Having said that, generally, babies in developed countries receive a more comprehensive (and cutting edge) treatment earlier and faster, including post cleft surgery care.
Cleft Lip/Palate ‘has a profound impact on the family system, [especially in developing countries] as not only do parents have to adjust to the normal demands of parenthood, but they also have to deal with increased stresses and challenges resulting from the disability. Source: The impact of having a baby with cleft lip and palate on parents and on parent-baby relationship: the first French prospective multicentre study. Grollemund B, Dissaux C, Gavelle P, Martínez CP, Mullaert J, Alfaiate T, Guedeney A. BMC Pediatr. 2020;20:230. [PMC free article] [PubMed] [Google Scholar]
‘Most parents are often not prepared for a child with a facial cleft deformity and generally do not have the necessary knowledge to deal with the unexpected deformity. Source: Psychological issues in cleft lip and cleft palate. Sousa AD, Devare S, Ghanshani J. J Indian Assoc Pediatr Surg. 2009;14:55–58. [PMC free article] [PubMed] [Google Scholar]. They feel guilty and embarrassed, which is often intensified if either parent feels they did something wrong during the pregnancy to damage the baby.’
Parents (especially mothers) cause clefts.
Myth:
‘...individuals [,say,] in India who practice Hinduism believe that a cleft lip/cleft palate (CL/CP) is the result of sins from a past life..' Myths and misconceptions in the cleft lip and palate community... clefts are a result of the mother being promiscuous during her pregnancy...clefts are caused by the mother using a knife during a full moon…[mother/parents mocked someone with disabilities during the pregnancy]’
Reality:
‘It is important to understand that while no one really knows exactly why clefts occur, most experts agree that they could be a result of many things. [Myths are folklore intended to explain for localized comprehension].There could be a genetic component as well as environmental factors like drug and alcohol use, infections, lack of Vitamin B, and more.’
Clefts are caused by demons or witchcraft.
Myth:
‘...myth that suggests people born with clefts are either cursed or possessed, and even some respected tribal chiefs and religious leaders believe this to be true. This myth is mostly heard in some African countries, and has cost the lives of many innocent children.’
Reality:
When Amissou saw his son smile for the first time after his cleft surgery, he made it his purpose to go from village to village in Cameroon spreading a very important message…Your cleft "is not a curse," he said. "This can be treated. There is a solution for it, and you can access it for free, thanks to Smile Train. Don't be afraid."
Clefts are only an "aesthetics problem."
Myth:
‘Having a cleft lip and/or palate goes beyond appearances alone.
Reality:
Clefts are accompanied by many challenges. For example, most people born with clefts have difficulty eating, breathing, hearing and speaking.
Clefts are contagious.
Myth:
‘Some people believe that clefts are contagious, and some are so scared of this that they won't allow their children to play with others.’
Reality:
‘Clefts are not contagious.’ It's a myth that gets passed down and passed on, as it's easier to (continue to) be ignorant than make an effort to understand a treatable ‘condition.’
Myth Bust in developed countries
Myth:
‘Clefts of the lip and palate can be repaired all at one time.’
Reality:
‘In general, repair of the cleft lip is performed around three months of age when the child is strong enough and the risk of anesthesia diminished. The palate is performed around one year of age so as not to interfere with growth of the facial bones but delayed past the beginning of speech development. The gum tissue is repaired even later when a little bone is used to fill in the deformity.’
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Myth:
Cleft defects are 100% preventable
Reality:
'Right now, there is no way to 100% prevent the formation of a cleft in an unborn child. But there is no known preventable method today.'
Myth:
Children with a cleft cannot smile
Reality:
'Babies are babies, whether cleft or not. They sure can smile and interact as all kids do. Of course, cleft repair surgery helps them smile better.'
Myth:
Children with a cleft cannot speak
Reality:
'Children born with cleft lip and palate can speak. However, due to the lack of structure, their speech is unclear. Speech and hearing difficulties are often present. So, children with cleft have access to speech-language therapy services. Speech therapy focuses on clarity of speech and overall language development.'
Myth:
Children with cleft have learning difficulties
Reality:
Not all children born with a cleft [present with lower IQ compared to] their peers. Furthermore, each child is different and their level of learning varies. However, there are high incidents of learning issues in children with cleft. The right academic support can help them perform like their peers.
Myth:
Children with a cleft cannot lead a normal life
Reality:
'Of course, they can! They live a normal life like their peers. Further, with speech therapy, academic support, and family support they lead a normal life.'
Myth:
Cleft Surgery Always Leaves a Big Scar
Reality:
'Depending on the severity of your child’s cleft lip will help dictate just how much scarring they may have. In many instances, your child’s surgical scar will drastically fade after a few years and may even go almost entirely away as they reach their teenage years or adulthood.’
Addressing the Myths
In developed countries there are numerous sources, from non-profit foundations to clinics to teaching hospitals to medical group practices and so on, both on-line and off-line, to answer questions and treat clefts.
In developing countries, especially as one goes to tier 2, 3 and 4 cities, busting the myth about cleft is a must, as, taken to extreme, may result in infanticide. Cleft-Related Infanticide and Abandonment: A Systematic Review of the Academic and Lay Literature | Request PDF
A community based approach, to compliment scientific sharing, especially in the developing countries, will get traction on demystifying cleft. The work of Cleft Friends, in South Africa, Cleft Friends - Smile Foundation, ‘which connects mothers of children with cleft palate to share their experiences,’ could be said as the poster child for community based approach.
The community extends to:
-Former patients/families sharing their experiences in the journey, basically, saying, ‘you are not alone!’
-Religious, tribal leaders, and local influencers, speaking the local language/dialect, in town hall type meeting environment is probably more credible and persuasive than local politicians or even science in removing the taboo associated with cleft and suggesting procedures for a ‘normal life’ for the patient and their families. Obviously, this (initially) requires addressing their questions to their level of comfort.
-Hard copy cleft materials, while understanding local sensitivities, from posters to flyers, to radio (even television) talk shows to (where technically feasible) streaming/website url and so on, that cleft is treatable. The use of before and after (surgery) procedure pictures should be used wisely after careful considerations.
-Local clinics, local hospitals, counseling by local clinical psychologists (if/where available)
Post Surgery Cleft Care
The cleft surgery is only the beginning of the process to ‘normalization’ of the life of a cleft patient, as what happens next, over time, is as important as the procedure itself. There will be a number of issues that must be addressed for the ‘operation’ to be deemed a success!
There are ongoing issues of (1) feeding/nutrition; (2) ear infection challenges; (3) dental concerns; (4) speech therapy; (5) post surgery support groups and so on. These issues are raised at the Dr. Faizi Foundation for Children with Cleft under Post Surgery Cleft Care: Dr Faizi Foundation for Children with Cleft.
Conclusion
We need to desensitize cleft lip/cleft palate and it starts with debunking mythics as fake news with community and scientific based approach so that children may lead normal lives and become contributing members of society. We must also understand cleft surgery(ies) is just the beginning, and post surgery cleft care is as important as the procedure for the comprehensive treatment and recovery of the patient.
Cleft surgery is not only an investment in the child and their family, but micro-economically to their locality.‘...performing cleft repair surgery - at a cost of $250 - could boost local economies by up to $50,000 per cleft patient as they go on to lead full, productive lives and contribute to society, a study published in the World Journal of Surgery…The study, which analysed cleft procedures performed by Smile Train in 83 countries between 2001 and 2011, said such operations had contributed at least $3 billion to the global economy…"Investment in cleft surgical repair has resulted in tremendous economic gain for low and middle-income countries, shining a light on the impact and cost-effectiveness of surgical interventions globally," said study author Scott Corlew. Cleft surgery boosts economy, gives developing nations reason to smile-charity | Reuters
We welcome your comments and donations, Ways to Donate, to help with post cleft surgery care.
Let's provide a ‘Reason 2 Smile!”
Executive Chairman Evrensel Group of Companies
6moSo happy to see you "online" my dear friend. I would so like to have a catch up chat with you. We have both been through a lot these past 2/3 years but we are still here and doing whatever we can to make the world a better. Huge respect and no small affection for you Rushdi. Please reach out..
Great to see the importance of debunking myths about cleft and raising awareness during Cleft Awareness Month.