AMMAN // Dozens of children squeezed into an outpatient clinic on the outskirts of Amman last week hoping to be chosen to have an operation that would transform their lives. The children, who have a cleft lip and palate, were joined by their parents at the state-run Tutanji Hospital as they waited to see plastic surgeons who were volunteering as part of Operation Smile Jordan.
For many families, the surgery provided by this non-profit organisation devoted to treating children with facial deformities is the only hope for their children to get the help they need. "My son still needs more surgery and we cannot afford to treat him," said Raeda Momani. Mohammed Abdullah, her five-year-old son, was born with a cleft lip and palate. He has severe facial deformities and has been operated on five times, most recently nine months ago by Operation Smile surgeons.
"Doctors have planted a bone [in the upper jaw], and he is better. He can eat everything, and he started to ask me to take him places." Cleft lip and a palate deformity is a condition that occurs one in 600 to 800 births worldwide. They do not necessarily occur at the same time, but when they do, a cut in the upper lip and the palate forms a split. Those born with such abnormalities are vulnerable to ear infections and are at risk of hearing impairments and speech defects.
Mrs Momani said her son had made a lot of progress since his most recent operation and his young uncles who used to avoid him had started playing with him. However, Mohammed still mumbles when he talks. "Yesterday he asked me to buy him books and I tried to enrol him in a nursery. But the teacher told me that his speech is difficult and asked me to wait until his speech improves. But I felt it was only a pretext."
And while the week-long campaign seeks to operate on 100 children from Jordan and the West Bank, Mrs Momani is not sure that her son will be chosen. She is also trying hard to get an exemption for her son to be treated at a private hospital because she cannot afford to pay the costs. Operation Smile was founded in 1982 in the US state of Virginia. Since then its volunteers have treated more than 130,000 children born with cleft lips, cleft palates and other facial deformities. The organisation operates in 51 countries.
The Jordanian branch was set up in 2004 and so far has treated more than 1,117 Jordanian, Iraqi and Palestinian children. There are 70 medical and non-medical staff, Jordanian and international, in addition to 300 student volunteers working with the Operation Smile Jordan campaign. Children with cleft lip and palate do not only suffer physically, but also mentally. "They are deprived socially, educationally and nutritionally," Benjamin Rodriguez, a cosmetic and plastic surgeon volunteering with the organisation, said. "Fixing the lip makes them acceptable to society. They can get jobs, go to school and are not an embarrassment to their families. Fixing the palates will improve the function of their speech and swallowing."
"In some cultures, particularly in Central America, the children are called monsters. They are kept at home and from interacting with any other children and they are considered a curse to their family." Among those waiting for their children to be screened was Sana Ayed, who was sitting in a tent with her husband, Yazeed Hamed. Their two-year-old daughter, Rawan, was born with cleft lip and palate. She has had three operations but requires more. She also needs speech therapy.
"When she speaks it is like she is talking from her nose. Other children will comment on her when she goes to nursery or school. We will leave that to God," Mr Hamed said. Studies show the defect can be caused by a variety of factors, such as taking certain medications during pregnancy, a lack of vitamins, exposure to pesticides or genetics. Most of the time, however, the cause is unknown and could not be prevented.
Another mother at the clinic was Myassar Jabbali, who had her 25-day-old son, Omar, in a bundle. Her husband, Khader Abu Sneineh, prevented her from seeing her son for five days, concerned about her reaction and her health after undergoing a Caesarean. "I was afraid that she would collapse. I first told her that his lip was slightly bruised and that with operations little by little he will improve."
But Mrs Jabbali said she still cries and was not accepting of her son's condition. "I have never even heard about cleft lip before. I was shocked and surprised. I have asked many about the reasons. People told me it could be because of anger during pregnancy or pollution." For those whose children have been operated on, life has improved. Ayham Mohammed, now 14 months old, was operated on by the Operation Smile team nine months ago. His mother, Amani, said surgeons repaired his lip and she hoped he would be selected to have his palate fixed. He still has difficulty in swallowing liquids.
"I used to stay at home with my in-laws avoiding people, now I take him out often," she said. smaayeh@thenational.ae