Cleft lip and cleft palate are birth defects that occur when a baby’s lip or mouth do not form properly during pregnancy. Together, these differences commonly are called “orofacial clefts”.
Orofacial clefts are usually identifiable at birth as an opening or split in the upper lip, the palate or both.
Other symptoms includes:
- Swallowing problems
- Feeding problems
- Flow of milk through nasal passages during feeding
- Recurrent ear infections that may result in hearing loss
- Speech difficulties
- Misaligned teeth
- Change in nose shape
There are varying opinions on the actual incidence of clefts, but most experts agree that, in part, it depends on ethnicity. Some experts say 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.
What causes clefts is not well known, but most experts agree that the causes of cleft lip and/or palate are multifactorial and may include a genetic predisposition as well as environmental issues such as drug and alcohol use, smoking, maternal illness, infections, or lack of Vitamin B, also known as folic acid. In most cases, it is not known what has caused a cleft lip and/or palate, but research is ongoing to better understand the condition.
Having a baby born with a cleft is generally upsetting for parents especially when they have no knowledge of the situation and it often leads to stigma and challenges in marriages and with family members.
Lona Mutsena from Zengeza in Chitungwiza, told journalists during a workshop organised by Smile Train, that she faced many challenges when she had her son who had a cleft lip.
“It was hard when my son was born with a cleft lip, my husband’s relatives accused me of witchcraft, they said I wanted to eat my own son. It was a painful experience because I didn’t expect it.
“They didn’t want to have anything to do with me or my son and we had to leave. Fortunate enough, my husband accepted the situation and he stood by me and went on to name our son after himself David Junior.
“He said to his people you have rejected him, but I have accepted him so I will give him my name,” she said.
According to Lona, even though David went to have corrective surgery courtesy of Smile Train, they are still not in good books with her in-laws.
“The situation is still the same, we still don’t see each other because of that issue, we are not on talking terms even though David was treated for the condition,” said Lona.
There are many parents, especially women who are suffering from the same stigma that Lona went through, even though cleft lip and cleft palate can be corrected with surgery or a series of surgeries depending on the type of the situation.
The continued suffering even though corrective surgery is available emanate from the scarcity of information and awareness about cleft lip and cleft palate which has seen some growing into adults with the condition.
Some parents, due to lack of information and knowledge about cleft lip and cleft palate, end up locking their babies indoors due to fear of stigma perpetrated by society and family members.
In a bid to raise awareness about cleft lip and cleft palate and the availability of free surgery, Smile Training took it upon itself to engage the media to help spread the message and dispel the myths associated with the situation.
Speaking during the media workshop, Smile Train program manager Southern Africa Sibusisiwe Shyna Yona said the media is a critical sector in terms of raising awareness because it reaches far and wide.
“Why we are engaging you members of the media is because we realised that you have the people and people listen to you and you are able to reach as many as possible.
“So this engagement is meant to sensitize you through capacity building so that you can play a leading role in raising awareness about cleft lip and cleft palate in Zimbabwe,” she said.
One of the participating journalists Tendai Guvamombe from Spotlight.co.zw Media, praised Smile Train for capacitating the media, adding that it will go a long way in helping them to better inform the public about cleft lip and cleft palate and the surgery.
“As journalists, we are thankful to Smile Train for training us on cleft lip and cleft palate. We were unable to provide adequate coverage to the condition simply because we were lagging behind in terms of information.
“We now have a better understanding of the various issues regarding the condition and we can authoritatively say we are now well equipped.
“So going into the future, we shall utilise the knowledge and our skills to raise awareness about cleft lip and cleft palate,” he said.
The organisation (Smile Train), is one of the few that have made a positive difference by providing free life-changing surgical treatment to various children in Zimbabwe.
Smile Training is working in about 38 countries in Africa through its various partners to provide free cleft surgeries and comprehensive cleft care.
The organisation has provided more than 113 000 life-changing cleft surgeries across Africa.
In terms of price, the corrective surgeries for cleft lip and cleft palate are costly and mostly priced in United States dollars.
However, according to Sibusisiwe Shyna Yona, as long as it is her organisation (Smile Train) proving the surgery, people will not pay anything, they only need to present themselves.
“For as long as Smile Train is doing the surgery, it will remain free and people need only to get in touch to register, get screened and get the surgery done.
“The surgery takes from 45 minutes to weeks depending on the nature of the situation,” she said.
Myths about Cleft lip and Cleft Palate
Witchcraft/ evil spirit
Many people tend to associate cleft lip and cleft palate with witchcraft, a curse or evil spirit, however, the situation is a purely biological condition that can be corrected and is common around the world and is even less common in Africa. Cleft lip and cleft palate is most common among Caucasians and Asians.
In Africa some clans tend to assume that when a woman or women bear children that have cleft lip and cleft palate, it is a sign that they were prostituting or practising infidelity and were eventually punished by the gods.
However, this is not true. While there is no scientifically proven cause of cleft lip and cleft palate, current data has linked the situation to environmental conditions, with the situation more prevalent in areas that have mining of some sort taking place.
Zimbabwe has cases of babies who are born with cleft lip and cleft palate. However, most of the people who have been treated for cleft lip and cleft palate by Smile Train are from Manicaland Province.
Can clefts be treated?
Reconstructive surgery for clefts has evolved over more than half a century, and today’s techniques and procedures have come a long way. The surgery today is simple and the transformation is immediate. Patients see their smile for the first time, parents cry tears of joy, and lives and communities are changed forever.
TREATING THE WHOLE PATIENT
Smile Train is committed to treating the whole patient through programs that provide access to important comprehensive cleft care services.
Comprehensive cleft care includes essential treatments beyond cleft surgery, such as nutrition services, orthodontic and general dental care, speech therapy and emotional support, intended to ensure long-term, successful rehabilitation for Smile Train’s cleft patients.
Even after surgery, many children with clefts will need speech therapy to address language delay, articulation problems, and hypernasality.
Children born with clefts often have difficulties feeding because of their inability to create a closure to suckle. Mothers and caregivers often need support to learn how to feed and support the growth of their baby.
Dental And Orthodontics
Missing, small, extra, and crooked teeth are common in cleft patients even after surgery to repair their cleft. Dental services are vital for the full rehabilitation of cleft patients.
Children born with clefts may have visible scars and/or differences in speech that can lead them to feeling different and, in some cases, experience self-esteem issues. Counseling and support are essential throughout their development for the children and their families.
We are starting pilot programs in ENT services and genetic counseling.
We also provide Smile Grants to cover the non-medical costs of treatment for many of our poor patients and their families such as transportation to treatment, food and lodging during treatment, and lost wages during treatment.
Cleft lip and cleft palate is not a death sentence, it is not a disability and the affected people have the opportunity to smile again, courtesy of Smile Train.
The truth about cleft lip and cleft palate : Tourism Focus