Cleft Lip Surgeries – Fixing Smiles, Restoring Families – South Sudan

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Samaritan’s Purse initiated Cleft Lip missions in South Sudan in 2001, working closely with the Ministry of Health. Collaboration with Primary Health Care Centers (PHCCs) and other NGOs in the country helps identify patients who are then brought to Juba for surgery. Over 90% of patients come from remote parts of the country and are often flown to Juba using Samaritan’s Purse Mission Aviation Services (MAS) which operate from Kenya and Uganda. The program is unique in that it transports patients for surgery from various parts of the country and then brings them home. Support from MAS is an important piece of a complicated logistical puzzle, enabling access to care that patients would not otherwise have.

Cleft lip and cleft palate are openings or slits in the upper lip, roof of the mouth (palate), or both.
It is a relatively common birth defect that is easily corrected by a trained doctor. However, if left untreated, children grow up with facial disfigurement and have difficulty feeding and swallowing.
Sometimes liquids or food can come out of the nose. Babies who survive the risk of abandonment often have difficulty breastfeeding and develop malnutrition. Some of them grow up with speech impediments, but all grow up being ridiculed, teased and shunned. They grow up to be ostracized members of their community. They are considered cursed and are often given the name “Machiek” which literally means “Deformed”.

When the Samaritan’s Purse Mobile Medical Unit team in Thaker traveled to Nyakouth, they rushed into their tukul to put on their ‘Smile’ t-shirt. It meant more than clothes to her. It represents the thing she couldn’t do for several years, until a simple surgery fixed her face and gave her a smile forever.
Nyakouth was born with a cleft lip. Although it is a common and easily fixable condition, in South Sudan it carries such a strong stigma that sometimes babies with this condition are considered cursed, abandoned and left for dead. In most countries, cleft lip and palate surgeries are common and easy to perform. However, in countries like South Sudan where healthcare is limited, this surgery, although necessary, is not available. Samaritan’s Purse launched the Cleft Lip mission with the aim of restoring dignity and self-esteem to people like Nyakouth who waited 65 years for this miracle surgery.

Until then, Nyakouth had resigned herself to a destiny of solitude, rejected by her community.
She thought nothing and no one could help her. Being ostracized by the community was one thing, but being rejected by the family was another.

Her greatest sorrow was not being able to adore her grandchildren. “The grandchildren run away from me. They fear me. They call me a wild animal,” she said. In December 2021, his miracle finally happened and Nyakouth was able to have his cleft lip surgically repaired during the Cleft Lip mission. She never expected to finally savor all the grandmotherly moments she had missed – holding her grandchildren, telling them stories, playing with them, and cooking for them.

All her life, Nyakuoth was teased, neglected by other children, and told she was cursed. She was deformed. After her operation, she couldn’t help looking at herself in the mirror. She couldn’t believe her transformation. “Everything is new,” she says.
December 2021 marked 10 years of the Cleft Lip and Palate Mission in South Sudan and has since repaired the lips of over 700 babies, children, youth and adults in that country, and over 1,000 in countries like Sudan. Liberia, Bolivia, Myanmar and Guatemala. . This year, a team of 21 experienced international surgeons and medical staff will perform cleft lip surgeries for children and adults who have been accepted into the program through their respective PHCCs. The surgeries scheduled for April 2-8, 2022 will take place at Juba University Hospital and will be performed free of charge.

Samaritan’s Purse is no longer accepting new patients for this current mission. However, the program will return to Juba in December 2022.

The Cleft Lip mission has brought smiles, healing and restoration to people in various countries around the world, including South Sudan. Once dismissed as cursed, people who have had cleft lip surgery have a new life. Today,

Nyabouth is constantly surrounded by her grandchildren. These little ones who fled from her now cling to her and sit on her lap. Neighborhood children often gather around her as well. They are all fascinated by the transformation they have witnessed. Some of them touch her lips and laugh with her. It is no longer set aside. She is with her family. When asked what her husband thought, she replied, “In our old age, he finally saw my face.” As our team left their house, Nyakuoth could only do so much to contain his joy. She continued to bless Samaritan’s Purse and the surgical team that changed her life forever.

Christine E. Phillips