About 5,200 Egyptian children could recover from hearing loss every year, yet only 1,500 of them do. We visit Egypt's fist rehab centre specialising in hearing loss to unveil how medical maltreatment, unawareness, and lack of resources hinder its cure.
“I was terrified at the beginning. You know, the idea of my son having his skull opened and something I don’t know being implanted in his head is scary. I wasn’t sure whether this would help or not,” says Mona*, whose little son Ahmed is rehabilitating after receiving a cochlear implant. The device, implanted through surgery, helps those severely deaf with a sense of sound by acting in place of the sensory hair cells that are damaged.
At the Med-el Clinic, Egypt’s first rehab centre specialising in hearing loss, children are learning to dance according to the change of rhythm in music; meanwhile, in another room, a teacher is showcasing to the younger ones how to pronounce the names of colours.
“I realised my son couldn’t hear when he was nine months old,” Mona recalls. “Every time I tried to play with him, he wouldn’t respond. He would cry, looking for me while I was in another room, and when I called his name, he wouldn’t come or respond. I couldn’t wake him up when he was sleeping; that’s when I felt there was something wrong,” she says.
But after a first medical visit at the Al Kasr Al Ainy Hospital, the doctor told her there was nothing wrong. “He just said he was ignoring me. But for the following three months, he didn’t show any sign of recognising my voice, so I had to take him to another doctor,” she narrates. After being diagnosed with severe hearing deficiency, doctors gave him hearing aids for six months; “but it was totally in vain,” Mona says. A surgical operation to have a cochlear implant was the only choice left.
According to a study published by the Eastern Mediterranean Health Journal, 16 percent of Egyptians across Alexandria, Dakahlia, Luxor, Marsa Matrouh, Minya, and North Sinai suffer hearing loss. The survey, titled Prevalence and Patters of Hearing Impairment in Egypt: a National Household Survey, coincided with data released by the WHO in 2007, and concludes that the prevalence is even higher in children under four years old, with 22,4 percent of children affected.
According to Dr. Wafaa Youssef, Deputy General Manager of the Med-el Clinic, about 5,200 newborn children with hearing loss annually can potentially hear again with a cochlear implants. “The problem is that only 1,500 children receive it, leaving 3,700 children deaf,” she says. In addition to the lack of awareness, the high cost of the procedure - which surpasses 100,000 EGP - plays a big role.
Timing is also crucial, says the physician, who is also a psychologist for children with special needs. “A child that is born with hearing loss will only have five years before it becomes permanent or causes permanent damage. That’s why cochlear implants are best utilised at a young age, where children are able to develop and learn at the same capacity as other children their age,” she explains. “However, if the child is delayed in development due to hearing loss, this will inevitably lead to a delay in academic years of the child.”
“The operation will never succeed unless there is rehabilitation; in order to ensure that the child is able to interpret the sounds and to communicate, rehabilitation is more important than the actual operation,” Youssef explains. Launched in July 2015 through a partnership between the Egyptian Ministry of Health and Austrian cochlear implants company MED-EL, the centre offers rehabilitation to 50 children every week, in an effort to help them develop the same learning capacity as their peers.
The centre, which operates free of charge for the first six months of treatment, runs on a full-day basis every day, with both an individual system and a group one. Each semester lasts three months, after which the child is evaluated to define the next level for them.
A study published by the Middle East Journal of Medical Genetics on hearing loss in Egypt stresses that hereditary hearing loss is a major cause in Egypt population, amounting to 50 percent of the causes. But, according to Youssef, there are three other major factors leading to the impairment – and they are all socially grounded.
“There are generally three main causes behind hearing loss: mothers taking antibiotics or medication during their pregnancy, cousin marriage - which is very popular in Upper Egypt -, and high fever that is not treated on time in a newborn child,” she explains.
However, lack of education and unawareness of the importance of primary healthcare in Egypt hinder its early detection, a fundamental factor in reversing the deterioration of the child’s sense. “This is a main concern in less economically developed governorates in Egypt, where mothers do not have access to primary healthcare and are not educated to understand what hearing loss is, and if it can be detected in time for a cure,” says Youssef.
But one Egyptian parent, moved by the lack of awareness in a country where prevention is a foreign concept, decided to take action. Ashraf Ibrahim began the campaign on social media in 2015, after realising there was “something different” about his son. The campaign, called Esma3ny, quickly escalated into a nationwide community to stress the power of preventive care. The page reached over 400,000 followers and triggered a cascade of activities, which included a marathon with Cairo Runners, with more than 2,000 participants.
Giving parents tips to protect their children by performing the hearing screening on the day of their day, Esma3ny also urges parents not to respond when family and friends suggest that a delay of their child’s first words is normal; as well as visiting a doctor immediately if the child has fever. Among other recommendations, the page suggests that whether it is an ear, nose, and throat doctor or an audiologist, to check the case.
Mona’s son Ahmed was operated on at the age of two, with a big part of the cost covered by public insurance. “There is nothing like seeing the look in his eyes when he heard me calling his name for the first time. I had nothing on my mind other than the thrill of thinking that he’s hearing his own mother’s voice,” she says.
Photography by @MO4Network's #MO4Productions.
Photographer: Kareem El Sabaa.
Videographer: Mina Saber.