If you are born with a congenital defect such as a cleft lip or palate in the Netherlands or in another developed country, chances are that you will receive surgery soon after you are born, and live a normal healthy life afterwards. On the other hand, if you are a baby born in a developing country, for example in the African continent, most probably you will not receive surgery at all, and you have to live with your defect for the rest of your life. Often causing you to be an outcast and not giving you the chance to live a normal life.
Cleft lips and palates
A cleft is an opening in the lip, the roof of the mouth or the soft tissue in the back of the mouth. A cleft lip, also sometimes referred to as a harelip, may be accompanied by an opening in the bones of the upper jaw and/or the upper gum; it is an opening in the upper lip that can extend into the base of the nostril. A cleft palate occurs when the two sides of a palate do not join together, resulting in an opening in the roof of the mouth. A cleft lip and palate can occur on one side (unilateral) or both sides (bilateral).
A child can suffer from a cleft lip, a cleft palate or both. Cleft lips and cleft palates are congenital defects that occur early in embryonic development. Clefts occur between the fourth and sixth weeks of pregnancy, as the facial structure of the fetus develops. If the bones do not connect correctly a cleft can develop. The cause of this is still unknown.
Cleft lips and cleft palates are the fourth most common birth defects in the world and are typically corrected shortly after a baby’s birth in areas with sufficient access to health care. However, for many children in rural areas mostly in developing countries, medical treatment is not available. Due to low self-esteem, as well as feelings of isolation, these children often live as social outcasts.
The situation in Africa
It is estimated that in the developing world, the number of babies born with this deformity is one in 500-600. This means that, assuming 15.000 children are born per hour worldwide, a child is born with a cleft somewhere in the world approximately every 2 ½ minutes. More than 70% of babies with a cleft lip also have a cleft palate. Men are affected more frequently than women. Approximately 10.000 infants are born with a cleft lip and palate throughout East Africa each year; however, there are only 20 reconstructive surgeons in this region; this means one surgeon for 10 million people. Without treatment, these children remain physically, psychologically, and socially disabled.
Being born with a cleft in a developing country is truly a curse. Every newborn in Uganda for example, born with a cleft is given the name Ajok which means literally “cursed by God”. Some newborns are even killed or abandoned right after birth. The good news is that every child with a cleft can be helped with a relatively low-cost surgery.
Since you see relatively many people with cleft lips and palates in the African continent it looks like the situation there is worse than in other countries. Dr. Mengiste, a surgeon working for the NGO AMREF, explained that Africa has a similar ratio as many as Western countries, but that the problem is caused by the back-log of patients who were not treated at birth. The current back-log is suspected to be about 100.000 patients. Still many individuals in Africa do not realize that a cleft lip/palate can easily be corrected through surgery and so if the children survive their first year of life without complications, fixing the cleft palate becomes less of a necessity; however, the change it creates for the patient is enormous.
Social and health impact
For many children born with a cleft lip and/or palate in rural areas around the world medical treatment is not available. Often these children cannot eat, drink, speak, hear, or breathe properly. As a result, many suffer from malnutrition, medical and psychological problems. If they are not treated at a young age, many children can die because they are unable to get proper nutrition due to an inability to suckle, which causes problems with breastfeeding. And if they survive, they do not grow well, which has consequences for their further development. Ear disease and dental problems occur frequently amongst infants with clefts, as do problems with proper speech development; therefore these children may have difficulty eating and hearing.
There is research dedicated to the psychosocial development of individuals with cleft palate. Self-concept may be adversely affected by the presence of a cleft lip and or cleft palate, particularly among girls. Research has shown that during the early preschool years (ages 3–5), children with cleft lip and or cleft palate tend to have a self-concept that is similar to their peers without a cleft. However, as they grow older and their social interactions increase, children with clefts tend to report more dissatisfaction with peer relationships and higher levels of social anxiety. Experts conclude that this is probably due to the associated stigma of visible deformities and possible speech impediments. Individuals with cleft lip and or cleft palate often deal with threats to their quality of life for multiple reasons including: unsuccessful social relationships, deviance in social appearance and multiple surgeries. Due to low self-esteem, as well as feelings of isolation, they often live as social outcasts and face a difficult live full of shame, isolation, pain and heartache. Their clefts usually go untreated because they are poor and do not have many for a relatively cheap surgery.
Cleft lip and palate surgeries are important particularly in Africa, for at least two reasons; in many communities deformities are not recognized as simple genetic anomalies, they are seen as taboo, or a punishment for an ancestor’s bad action. This leads to the person with the cleft lip and palate being banned by their community and often leads families to hide children in the home, not letting them go outside.
AMREF reconstructive surgery
The NGO AMREF has a diversity of health projects in Eastern and Southern Africa. As part of their outreach program, in which they send a team of specialists and reconstructive surgeons to rural remote and hard-to-reach hospitals and health centers to perform surgeries, they also perform reconstructive surgery on cleft palates and cleft lips.
Without treatment, children born with a cleft lip and/or palate remain physically, psychologically, and socially disabled. Most of them are not allowed to attend school or when they are older, hold a job. In Africa there is a relatively high amount of people with cleft palates and cleft lips, since maybe people did not receive the surgery when they were young; simply because they did not have the money or opportunity to obtain surgery. One cleft lip surgery can change a child's life forever in as little as 45 minutes. Surgery provides excellent results. Most surgeons agree that a cleft lip should be repaired by the time a baby is three months old. To repair the partition of mouth and nose as early as possible, a cleft palate generally is repaired between the ages of 12 and 18 months.
AMREF wants to help the people with cleft palates and lips and give them back a normal healthy life. This NGO has partnered with Smile Train to provide reconstructive surgery services to rural populations through 150 district and mission hospitals. Local surgeons are trained, and will perform 1800 cleft surgeries this year alone. This project was amongst others executed in Senegal, Chad, Ethiopia, Kenya, Tanzania and the Democratic Republic of Congo. Last year more than 1100 cleft lip/palate surgeries were conducted. In the DMR Congo, they provided free cleft lip and palate surgery and advanced training to a local surgeon and medical team. The team performed 50 life changing free cleft surgeries in 5 days.
Likinesh and Essayas from Ethiopia
Two persons that were successfully helped by reconstructive surgery are the Ethiopian 35 year old Likinesh and her son Essayas, both born with a cleft lip and palate. The AMREF reconstructive surgeons with the support of Smile Train visited the Arbaminch Hospital in Ethiopia. Likinesh lives 60km from this town and decided to make the long 7 hour journey to the hospital. When she and her son arrived, already thirty people were waiting in line. They waited and were screened, underwent blood tests and finally were informed they could undergo the reconstructive surgery. Likinesh underwent the surgery first and her son followed. She was extremely excited at her new face. Instantly, she asked to see her son. Seeing him, she wept tears of joy. She knew that her son would not have to endure the suffering she went through. “I have no money but please receive my gratitude.” She said. “May God richly bless you all, I now know that Essayas will become a doctor to give poor people hope.”
The life before her surgery was not always easy for Likinesh. Thirty-five years ago she was born in a village situated about sixty kilometres from Arbaminch. Her birth was not seen a celebration by her family members for she had been born with a cleft lip, a condition seen as a curse. She spent all her days within the home attending to family chores, cooking for her family, collecting firewood and fetching water while her siblings went to school and acquired knowledge. As a teenager, she was teased by her peers and shunned by many potential suitors. When Likinesh turned twenty, she was quite shocked when a handsome young man asked for her hand in marriage. She kept on asking herself how a man could want to marry a girl with no beauty and a deformity on her face but this man still insisted on the proposal.
After her marriage, Likinesh was still 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 eyes of the people around her. At first she gave birth to two beautiful children. Then she fell pregnant with her third child, unaware that he would be born with the same condition as she. She was sad that her newborn son had to undergo the same stigma and teasing as she underwent all her life. Now with the surgery their new happy life can start.
Baby Angelina from Tanzania
Also little Angelina, still a baby, was helped by Dr. Mengiste and his team. She was one of the 70 outreach patients, more than half of them children, waiting to be helped in an outreach program in Tanzania. Angelina’s mother carried her 4 months old daughter, whose mouth and nose were badly disfigured due to a cleft lip and palate, for six hours to the nearest bus stop, to bring her from there by bus to the hospital in Moshi. Angelina could not be breastfed properly because of her disfigurement and therefore her mother had to feed her milk and porridge drop by drop. She is the first to be operated upon. This simple surgery will change Angelina’s life for the better. Her mother is very happy with the results: “Before the operation I had so many worries, that she would not survive, have friends or find a husband, now I am sure she will survive and live a normal happy life”.
* Jacqueline Lampe is director of AMREF Flying Doctors in the Netherlands.