“I will tell you a personal story that may help other mothers. During my pregnancy I was on a healthy diet, and I never took any medicines without my doctor's approval. However, I discovered that a year and three months after my daughter was born she did not pay attention when she was called. I was the first in our family to have a baby, so I had no experience with children. I went to the doctor and asked him the age at which my daughter could be expected to react to her name, and he said that from 10 months to a year she should at least turn round,” said well-known actress Youssra Al-Lozi at a recent Esma'ny (listen to us) event organised by the Waslet Kheir Foundation in Cairo to help children with hearing impairments. “I tried calling out to her, but still no reaction. Friends advised me to give her a hearing test, and the doctors discovered that she had a severe hearing disability. They said she would need to use a hearing aid for six months before having a cochlea implant operation. She used the aid for a while, but there was still no reaction. After an MRI scan, we discovered that the only way forward was an operation. She had the operation when she was a year and eight months old,” Al-Lozi continued. The Esma'ny event was designed to help raise awareness about child hearing impairment in Egypt. The slogan of the campaign is “Rescue a Child from a Life of Silence”, and the event was moderated by TV presenter and former Miss Egypt Amina Shelbaya and Al-Lozi herself. Attending were director and founder of the Waslet Kheir Foundation Mohamed Al-Kabbani, specialist in hearing disorders Mona Al-Akkad, consultants at the National Research Institute Amr Abbasi and Noha Nader, and psychologist Sarah Al-Shakankiri. The event was held in collaboration with the Fatakat Forum, a website hosting readers' articles. A competition was announced at the event for the best article about the Esma'ny campaign as well as for the best articles about raising awareness about hearing impairments. “Esma'ny is a non-profit initiative established in 2014 with the aim of assisting people with hearing impairments through raising awareness about them, focussing on children with hearing problems. Many people do not know enough about hearing impairment, which is why the event aims to raise awareness about early screening and what to do and where to go if a child suffers from hearing problems,” Shelbaya said. “Waslet Kheir was established a year-and-a-half ago. We were a group of young people wanting to serve society. We looked for an issue that was not being attended to, in this case hearing impairment among children. A child that can't hear can't talk and so can't learn. This means he will have difficult integrating himself into society,” Al-Kabbani said of his foundation. “We found the greatest problem to be that such children need cochlea implant operations before their fifth birthday, as if this doesn't happen they will likely not be able to hear or speak later in life. We started a race to save as many children as we could in this regard by raising funds for their operations. We do not ask people for funds directly, however. Instead, if there is a child who is in need and about to have the operation, we ask people to donate the money to the hospital directly,” he added. “It is not only the children who suffer, but also their families who are counting the days left for their children before they may permanently lose their chance to hear. We also work with children who have sight impairments, and sometimes we wonder which is worse, impairments of sight or hearing. Those who have difficulty seeing at least can hear what is going on with their friends, but those who can't hear cannot know what is going on and are not even able to express their feelings,” he said. According to Esma'ny statistics, 5,200 children in Egypt are likely to suffer from permanent hearing impairment if they are not given a new cochlea before they reach the age of five. The operation costs between LE120,000 and LE140,000, and there is a six-month rehabilitation period afterwards. It involves implanting an electronic device directly into the ear. “The costs of the operation depend on the hospital. The medical insurance system will pay about LE90,000 of the sum and funds around 1,000 operations per year, increasing this year to about 1,500 operations. We cannot ask the government to finance more operations, so it is our role as a society to help these children,” Al-Kabbani said. “Part of the problem is that people discover hearing disabilities after it is too late. For example, parents may discover it when their child is over four years old and then have to put their child's name on a waiting list for an operation. In addition, the older the child is the less chance the operation has of being successful. The earlier a hearing impairment is discovered the better,” he added. “The media has a huge role to play in making the Esma'ny campaign heard, in addition to the role it can play in raising funds. As a foundation we are able to pay about LE30,000 to LE40,000 per operation, but if we don't have donors we are not able to fund operations. We have sponsored some 530 operations so far, costing some LE9 million,” Al-Kabbani said. A SIGNIFICANT PROBLEM: According to WHO statistics, 360 million people worldwide are living with some sort of hearing impairment, or some five per cent of the world's population. Some 32 million children have hearing impairments, especially in low-income and medium-income countries. In Egypt, 4.5 million children suffer from hearing impairments, often related to problems in pregnancy, childhood fevers and hereditary reasons. Al-Akkad explained how the implanted device works. “The electronic device transfers external sounds to the brain by turning them into digital signals so a child starts to hear these through his nervous system. To make sure that an operation is a success, we test that the device is working and giving out signals immediately after the operation. Then we test the patient after a month after the first programming of the device through sound emission examinations and look for the child's reactions to sound.” An MRI scan can reassure doctors of the sound internal anatomy of the ear. “Not everyone who has a hearing disability can have the operation, as it is only for those with extreme hearing disabilities. If they have slight or moderate hearing disabilities, we give them a special hearing aid to use and a child can hear and speak after using this after special lessons. In the case of the operation, the child also needs to wear a special earphone,” Al-Akkad said, adding that parents needed to know that the operation was only the beginning, not the end, of the therapy. “The percentage of successful cochlea implant operations is high in Egypt,” she said, adding that operating on a child of over five years old was difficult because it will have become used to not hearing sound and may thus find it harder to adapt to the device. “The first examination should be done by a paediatrician or the family doctor when a baby is about one to two months old. A child should be able to wake up at the sound of a door opening in a quiet room, for example. When it is two months old, it should react to the sound of an electric vacuum cleaner,” Nader said, adding that if a mother wants to test her baby's hearing she should make a sound while she is standing behind it, not in front of it, so she can watch its reaction like turning its eyes towards the direction of the sound. “Some countries test the hearing of children that are two months old, but this is not the case in Egypt. This should be applied in Egypt, however, as it would save many children, especially those born in difficult conditions,” Nader said. Abbasi gave some tips for mothers hoping to avoid hearing impairments appearing in their children. “Caring for a child begins before it is born, as a healthy pregnancy means a healthy mother and a healthy child. A pregnant woman should keep away from medicine containing streptomycin, an antibiotic which can affect the hearing of the unborn child. She should also have a toxoplasmosis screening. She should screen for hepatitis B and C as well as other viruses like rubella,” he said. There is a way of finding out if an unborn baby of six months old can hear by using a duplex ultrasound test to test the flow of blood in a baby. The test emits waves, and the baby may respond to it by moving. Mothers also sometimes let their unborn babies listen to the Holy Quran or music, as a baby can hear at this stage. Babies with low weight at birth are more liable to hearing problems, Abbasi said. “We haven't found out all the causes of hearing disabilities yet, but our role is to increase the research to find out,” he added. Al-Shakankiri described the mental state of a child suffering from hearing disabilities. “In order to acquire skills, a child goes through what is called ‘sensory stimulation' — it develops through what it sees, hears, touches, and smells. These things help the child to understand the world around him. For example, when he hears he begins to understand the significance of what he hears. So if a child is unable to hear, he will feel trapped. He will also be unable to learn or socially develop,” Al-Shakankiri said, adding that parents may mistake hearing impairment for psychological disorders, so they need to visit a specialised doctor in order to help their child. Organic problems need to be ruled out before any presumption that a child has a psychological problem is made, she says. According to Al-Shakankiri, it is normal for parents to be shocked at first when they discover their child has a hearing impairment. They may not understand what they are dealing with, or what the solutions, or how the child will be later in life. There may be a phase of denial, in which the parents may feel the doctor has wrongly diagnosed the child. This may be followed by anger among other stages. One solution is to support the parents by introducing them to others who have been through such problems. “It is important to let them understand what they are dealing with, that there are solutions are, and that it is not the end of the world. This includes support from the doctor, the family and society,” she said. Al-Shakankiri said that some parents may tend to hide away children who suffer from hearing disabilities. “They may have a sense of shame or guilt and believe that it is their fault that the child is suffering. They may feel afraid to be judged by people, as there is a lack of awareness in society in general about disabilities. We have a problem with accepting such problems in general in Egypt,” she added. Al-Lozi agreed, adding that, “I would like to tell mothers not to be shy in speaking openly about the issue. Of course, it is very difficult for a mother to see her baby suffering from hearing disabilities. What the parents should know is that the most important stage is after the operation, and to be able to speak the child will need daily lessons until he is gradually able to speak.” Mothers should have their children take hearing tests as this will help guarantee their ability to have a good life in the future. It is important to eat healthily and stop smoking during pregnancy so that a mother does not blame herself if a child has a hearing problem. A mother should have self-confidence if her child has hearing problems, she added. She should waste no time in helping her child. HELP AVAILABLE: “In my case, I had a problem that I had no one to talk to about. Parents may need counselling, and doctors should raise their awareness about the problem and tell them how to look after their child,” Al-Lozy said. “It is advisable not to have more children until the child with the hearing problem overcomes it, so all attention can be given to it. You should not consult your family members or neighbours, as they may not give you the correct advice. Instead, you should see a doctor.” “After giving birth, a mother should make sure that her baby reacts to sound like turning its head towards a sound source. A baby who can't hear will not react. If there is a problem, the parent should not hesitate to see a doctor,” Al-Akkad said, adding that the Ministry of Health was starting to conduct hearing tests for children in areas outside Cairo like Fayoum. “Parents may send their children twice a week to talking sessions, but they also have a role to play at home by applying what they have learnt as this will help in the success of the operation,” she said. “To avoid hearing problems or any abnormalities in your baby, if you are about to have a baby you should lose weight. If you have diabetes, you should make sure that your sugar level is normal before you get pregnant. You should take all the necessary tests to make sure that you are in good health,” Abbasi said. “Parents need to accept their children. It is very important that they do not blame themselves or think that having a child with hearing disabilities is somehow shameful. They should know that their child needs them and that every problem has a solution. It is very important that parents take action when they discover that their child has a problem with his senses,” Al-Shakankiri said. “We should include people with disabilities much more in society and raise the awareness of society more generally,” she concluded.
