Cleft lip superstitions, Surgeries.

“Cleft beliefs and surgeries—Then and now,” a Guest blog by journalist Jenni Perez

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Karl Schonborn, the author of “Cleft Heart Chasing Normal,” is not the only person to social stigma due to  a cleft. This is because cleft lips are fairly common birth defects, affecting more than 1 in 600 children worldwide (National Institute of Dental and Craniofacial Research).

The first documented cleft lip surgery was in China around 390 BC on 18 year old Wey Young-Chi, who would later become a soldier. The history of the cleft lip is based on a combination of religion, superstition and charlatanism, according to the Indian Journal of Plastic Surgery. Spartans and Romans would kill these children as they were considered to harbor evil spirits. Today in developing countries such as Uganda, a child who is born with a cleft lip or palate is named ‘Ajok’ which means ‘Cursed by God,” according to Smile Train.

Cleft Lip Causes

The reason many cultures harbored  superstitions about children with clefts is because they were unsure of what caused it. Today, doctors believe that clefts can be caused by “anything that might disrupt the normal processes of the womb in the mother between the fourth and 12thweeks of pregnancy, when the face and the palate are being formed,” says Dr. Ruben Ayala MD, Senior Vice President of Medical Affairs for Operation Smile.  This can include things such as chewing tobacco, smoking, drinking alcohol or exposure to pesticides and pharmaceuticals the mother is taking. Clefts can also be caused by genetics. A mother or father can pass on genes causing clefting as either an isolated effect or as part of a syndrome that includes clefting as part of one of its signs.

Cleft Lip Surgeries that Change Lives

Around the 19th century,  knowledge about surgical correction advanced and gave parents and children with clefts hope of a normal life.

“Cleft surgery has evolved dramatically,” states Ayala, who oversees core surgical medical missions and trains medical professionals in developing countries, “The surgery today gives [a child] the ability to have their defect fixed really quickly [in a process that takes 45-60 minutes] and go on to live their life.”

The repairing of the cleft is usually done on children of six to 18 months of age. “All the pieces of the puzzle are there, what surgeons try to do is to try and get them to match,” says Ayala.

Previous surgeries have resulted in children having abnormal, hyper-nasal speech due to improper positioning of the levatator veli palanti muscle (a muscle in the soft palate of the human body), according to the St. Louis Children’s Hospital. In 2012, Albert Woo MD, a Washington University physician and director of pediatric plastic surgery at St. Louis Children’s  proposed a solution to this problem by developing a new surgical technique for cleft repair. Woo spent two years combining elements of different surgeries to come up with a solution that has reached an 88 percent success rate, as of 2012.

“My surgery involves first dissecting and moving back the muscle to its anatomic location,” Woo told the Doctor’s Digest, a publication of the St. Louis Children’s Hospital. “I then bring the muscle together by overlapping and tightening it as much as possible. The next step is to make a zigzag incision in the roof of the mouth, which lengthens the palate and helps fill the space at the back of the throat that was leaking air.”

Physicians Aid Clefts to achieve Normalcy.

Doctors such as Ayala and Woo routinely follow up with their patients after surgeries to make sure they are recovering adequately.

“Children with clefts should not live a life of misery or hidden in shame,” said Ayala. “They have a right to live life just like you and me. This [will happen] not only because of surgeons, but it will happen if all of society and members of our communities understand the hardships [that children with clefts] go through.”

By educating people about cleft lip causes and surgeries, society will become more understanding of the condition and therefore more accepting of cleft afflicted individuals. Also, by learning about the history of cleft lipped persons like Schonborn, those living with clefts today will understand they are not alone. They will be able to look at how others before them faced their battles with health and society and apply those lessons to their own quest for normalcy.

 

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To learn about Cleft Heart: Chasing Normal, click the nearby Amazon or Barnes & Noble buttons in the margins. Or click the image of the book cover. My coming-of-age memoir has intertwining love stories, mystery, tragedy, and triumph.
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