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Understanding cleft lip and palate

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SOCIAL stigma and isolation affect many women whose children have cleft lip and cleft palate.
At a recently held workshop in Harare, organised by Smile Train, Sprout Women Empowerment Trust (SWET) and Shumiro Sarah Crystal Magandi Trust, women whose children have cleft lip and cleft palate shared stories of difficulties they face in raising their children.
Sadly, the condition has been shrouded in myths and misconceptions which are alien to facts on the ground.
Monica Maunde (not real name) is among women living with children affected by the condition and is pained by the insensitivity of some members of society, including family members.
In Maunde’s case, the situation is worsened by the fact that her husband, the father of the child, has actually shunned his offspring.
“After the birth of my child, I did not know that apart from other disabilities, he also had a cleft palate,” said Maunde.
“The doctors said they could not operate on him and this did not go down well with me but later I accepted and embraced the condition of my son.
“What pains me is that the father is still in denial and does not want to play his fatherly role to our son.”
Participants also talked about how erroneous beliefs were affecting them.
In communities, the condition has been associated with witchcraft, bad luck and has been viewed as a form of punishment for some transgressions.
Women have also been accused of infidelity.
“Some of us with affected children have been forced to carry out a deoxyribonucleic acid (DNA) test to prove that we did not stray from our matrimonial beds, a situation which is demeaning,” said a participant.
As an international non–governmental organisation (NGO) that offers free cleft lip and palate surgeries, Smile Train is working with various organisations and stakeholders to ensure that cleft lip and cleft palate patients receive required assistance, free of charge.
According to a health brochure by Smile Train, “…a cleft occurs when certain body parts and structures do not fuse together during fetal development.
Clefts can involve the lip and the roof of the mouth (which is made up of both hard and soft palate).
Cleft lip and palate can also be unilateral, involving only one side of the mouth and face or bilateral, involving both sides.”
WHO estimates the global burden of children born with cleft lips and cleft palates at one in every 3 000 live births.
Most low and middle income countries do not have sufficient services available, making it difficult for patients to access services thereby increasing the number of children burdened with a cleft lip or cleft palate.
Sibusisiwe Shyna Yona , Southern Africa director of Smile Train said the condition resulted in social stigma affecting both mother and child.
“We had one patient from Hwedza (39) who had her cleft lip repaired; she had been stigmatised all her life. She was fortunate enough to find love for many in her situation are ostracised,” said Yona.
Yona urged both parents to be supportive of one another, including the child, especially in cases where children end up getting corrective surgery.
“Psycho-social support is a very important component when it comes to helping women with children who have cleft lip and cleft palate,” she said.
“As Smile Train, we are bringing together women with children affected to share notes and lessen their burden. It is important that they have a forum where they can freely ask questions and get the assistance they need.”
Yona said their organisation is also imparting various skills to economically empower women so they can effectively look after their children, especially in situations where they have been abandoned.
Causes of cleft lip or palate are multi-factorial and may include a genetic predisposition as well as environmental issues, such as drug and alcohol abuse, smoking , maternal illness, infections or lack of Vitamin B.
Treating clefts is not just about doing the operation; it involves going through a proper nutrition then an initial surgery. If there is a pallet, another surgery is then performed.

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