Surgical outreach and reconstructive surgery for cleft lips

By Patricia Vermeulen*

In Africa, there are only an estimated 2.3 physicians per 100,000 population, compared to 33.3 per 100,000 in Europe. This is compounded by the fact that 80% of healthcare specialists work in urban settings, whereas 70% of the population live in rural settings. This results in critical gaps in healthcare delivery among the most vulnerable populations. These gaps exist most profoundly in rural areas, where there is a lack of specialists and poor access to many core surgical and medical specialist services. In the development of healthcare it is essential to take medical and surgical services to rural and underserved hospitals across Africa.

Cleft lip and palate

Some of these surgical “outreaches” are intended to provide reconstructive surgery to adults and children. Examples of some of the conditions that are treated are severe burns, hand and foot disabilities, leprosy disfigurement, and cleft lip and palate reconstruction. Approximately 10,000 infants are born with cleft lip and palate throughout East Africa each year. The condition is sometimes referred to as a hare-lip, however this is generally considered as offensive. Cleft lip and cleft palate, which can also occur together, are considered as a type of birth defect. If the cleft does not affect the palate structure of the mouth it is referred to as cleft lip. This is a fissure or opening in the upper lip and can either be a small gap or an indentation. It can also continue into the nose, then it is referred to as a complete cleft. Lip cleft can occur on one side (unilateral) or can be two sided (bilateral). When the roof of the mouth contains an opening into the nose it is known as a cleft palate. Cleft lip and palate are caused by tissues of the face not properly joining together in the development during pregnancy. Clefts can also affect other parts of the face, such as the eyes, ears, nose, cheeks, and forehead. These conditions can result in feeding problems, speech problems, hearing problems, and frequent ear infections. We know that cleft lip and palate is primarily a genetic condition which is compounded by poor nutrition, lack of prenatal care and environmental factors. Currently, the best and only cure for cleft is simple surgery, costing as little as $ 250 and taking as little as 45 minutes.

Evil omen

A baby that is born with a cleft lip is often seen as an evil omen, a frightening sign of divine or demonic punishment. These children cannot be breastfed because of their cleft lip and palate. Ideally, surgery takes place to close the cleft lip within the first 2-3 months after birth. Surgery can be performed soon after birth, however, the preferred age is at approximately 10 weeks after birth. Unfortunately, such operations are not available for everybody, especially in rural areas in Africa. In most of parts of Africa a child will not get the surgery until much later in life, if ever. Therefore, many adults also visit the surgical outreach programs. When these patients arrive at the hospital, they share similar stories of shame and embarrassment. Often nobody wants to have anything to do with them, they are socially isolated and it is difficult for them to make ends meet.

To let communities know when and where the services will be available to them, much effort is put in the promotion of the surgical services through radio interviews, television interviews and brochures. The patients that come to the hospital often travel for miles to reach the medical facility. In many cases they come from villages that do not have roads and they travel by foot, walking hundreds of miles across the country. Some families come from as far as 700 miles away due to the shortage of trained cleft surgeons in the country. Often, the hospitals offer housing in nearby lodges to relatives as they wait for their children’s surgeries and recovery. To help more and more patients receive free cleft repair surgery, an added emphasis is put on training more qualified surgeons and pilot-patient transportation programs. Workshops are conducted that provide both formal and informal training for local surgeons to perform these operations.

The story of Likinesh and her son

Likinesh Hurma, a 35 year old mother of four, lives in a village about 60 kilometres from Arbaminch, a small town 500 kilometres south of Addis Ababa, the capital of Ethiopia. Likinesh was born with a cleft lip deformity that was considered a curse in the family. Consequently, she was not given a chance to go to school. She was also teased by her peers. Growing up, her life revolved around cooking for her family, collecting firewood and fetching water. To her surprise though, she received a marriage proposal when she was 20. “How would a man marry a girl like me with such a deformity in the middle of the face?” she asked herself.

In spite of the doubt, she got married and had four children. It is only after she was married that she came to know that her condition could be corrected surgically. However, this service was available only in Addis Ababa. She did not have the money for either transportation or hospital bills. Nor could she speak the language spoken in the capital city. Likinesh was stressed by her condition and avoided socialising as much as possible. She tried to avoid gatherings and marketplaces since she felt uncomfortable with the staring. Worse still, her third child Essayas (a boy) was born with cleft lip. This brought additional shock to the family.

Amref Health Africa’s reconstructive surgeons – with the support of Smile Train USA – visited Arbaminch Hospital to do cleft lip and palate operations. The visit was announced through local radio, inviting all patients in the region for free corrective surgery at the hospital. Likinesh decided to go, and to take her child with her to see if they would get some help. It took her seven hours to reach the hospital, travelling half of the journey was on foot and the rest by minibus on a bad murram road. When they arrived in the hospital compound they found more than 30 cleft patients waiting to be screened. Likinesh and her child joined the queue. After screening and blood tests, they were both declared fit to undergo reconstructive surgery. The surgeon asked Likinesh whether she wanted her child to be operated before her or after. At first, she wanted the child to be operated on first, but she soon changed her mind and asked to go first. When the surgeon asked what had caused the sudden change of decision, she said: “I would like to see the result on me first and then I will decide if my child will go for the surgery,” she said. She must have liked what she saw because both of them were operated on, as well as 26 other patients during that visit. After the operations, a smiling Likinesh said: “I am extremely happy that my child will not go through the suffering I have had to endure. I will send him to school right away.”

The story of Esayiyas

In a small village near Butajira town, 300 kilometres from Addis Ababa, Esayiyas and his wife were blessed with a baby girl. However, their jubilation was cut short by shock and frustration that seemed to numb the hands of time. Even their love could not allow them to see through the deformity of an angel’s smile. Their baby had a cleft lip. At the time, there was a belief in their community that such deformity could only be caused by a mother who had laughed at someone’s deformity during her pregnancy. “We were devastated. How could my wife be responsible for our daughter’s pain?” Esayiyas recounts. Esayiyas was worried that his daughter would grow up frustrated and lonely.

Two years later, his wife was expectant again. She was very careful not to laugh at anyone, although she knew that she had not laughed as previously accused. “I was vigilant and very self-conscious all through my pregnancy. I did not want to make a mistake”, she says. Happily, their second child was born without any abnormalities. In 2004, the couple had another child. As fate would have it, their baby daughter was cleft-lipped. The family was devastated. The villagers began to talk. “People said that our family had been cursed, I had to walk around knowing people were saying nasty things about my flesh and blood. It was horrible”, Esayiyas remembers.

Luckily, the doctor that attended to the birth of their third child had assured the family that the condition was normal and rectifiable at the town’s hospital, for a fee. Although this was good news, it called for money to travel and cover the medical fee, which Esayiyas did not have. At this point, it felt like all hope was lost. “I did not know what to do. I felt helpless”, he says. Esayiyas heard on radio that surgeons were visiting a hospital close to his village under Smile Train’s ‘When You’re Smiling’ campaign, giving free surgeries to patients with clefts. “This was a blessing; both my children got the surgeries that transformed their lives. Not only are they happy, but they can express their joy through beautiful smiles. I am grateful! What can be perceived as a small gesture has transformed the life of my family”, Esayiyas emphasises. This event has also gone a long way in demystifying the superstitious notions around the causes of cleft lip in their community. “Now people look at it differently, as a physical condition that can be corrected, rather than a curse”, adds Esayiyas.

*Patricia Vermeulen is CEO of Amref Flying Doctors in the Netherlands