Gaza’s deaf children want to be heard
GAZA CITY – Without uttering a single word, Lana Mohammed’s enthusiastic hand gestures communicate everything she needs to say to her mother Ameira, while playing in a room at the headquarters of a charity in Gaza.
Like all mothers who watch their children grow, Ameira yearns for the moment she hears her daughter call her “mommy,” but it has yet to happen.
Lana, now three, was only nine months old when her mother first suspected she might have hearing problems, and she was rushed to a nearby hospital in Khan Younis, a southern city in the Gaza Strip.
The doctors confirmed Ameira’s worst expectations: Lana was born with a genetic hearing impairment known as nonsyndromic hearing loss, and most of her hearing abilities are non-existent.
Despite the condition that weighs heavy on the family, Ameira has been given a glimmer of hope that an operation could enable her to hear. But there is a catch.
This surgical procedure would mean inserting a cochlear implant in Lana’s ear. However, it must be performed before Lana is five years old, according to Ameira.
After this age, the bones of the inner ear stick together and become stronger, making surgery more difficult and less likely to succeed.
Yet this is not the only challenge the family faces. Lana’s older sister, Lama, also suffers from the same hearing disability.
Six years ago, 10-year-old Lama received the surgery needed to insert the cochlear implant inside her ear at a hospital in Egypt, but unfortunately, complications occurred.
During the surgery, other nerves in the ear cavity were harmed, causing fascial palsy and later paralysis. Two months after surgery, Lama lost her ability to walk.
“Unfortunately our painful journey had just begun," Ameira said.
Out of reach
Ameira said she wants her older daughter to be diagnosed by the doctors in Egypt who performed the surgery on her, because she believes there was some sort of malpractice on their part. She said that for now this option is out of reach due to the "sealed gates" between Gaza and Egypt, referring to the Rafah border.
"What we have experienced with my older daughter has truly discouraged me to go ahead with Lana, but this is not the only problem since we do not have enough money [to pay for the operation]."
The cost of the operation is way beyond the means of Mohamed el-Assar, father of the girls, who is a construction worker making less than $300 a month. Costs for the operation range between $25,000 to $30,000, in addition to another $10,000 for travel and rehabilitation expenses.
The Gaza Strip has been under an Israeli military blockade since 2007, after Hamas was elected to govern the territory. The Rafah crossing lies some 50 kilometres east of the main North Sinai town of al-Arish in Egypt, and is the only land crossing into the Gaza Strip not directly controlled by Israeli authorities.
The Rafah border has mostly been closed under the rule of Egyptian President Abdel-Fattah al-Sisi. Residents of the Gaza Strip are struggling to cope with a crippled economy and stalled reconstruction following the 2014 50-day assault by Israel, the third and most devastating attack on the Strip since 2008.
The lack of medical equipment and qualified surgeons forces people to seek treatment outside of Gaza.
Zakaria Zakout, a nose, ear and throat doctor who deals with similar cases in his private clinic in Gaza, said that many children have missed their limited window of opportunity to have the cochlear implant surgery.
"Many Palestinian deaf children lost their opportunity of retrieving their hearing sense because they were not able to travel or because of the lack of the money," Zakout said. "This is why we give precedence now for children at younger ages to perform the surgery since they are more likely to end up with a successful cochlear implant."
Waiting for treatment
Some charities in Gaza offer to pay for parts of the costs, but most families in the besieged strip cannot afford to pay the remaining expenses.
Maha Mhana, the executive manager of the charity “Beloved Palestine,” told MEE that the organisation had contacted around 50 families in Gaza who were in need of financial support.
Their offer was to fully take care of the cost of the surgery, while the family handles the rest of the expenses, which is equivalent to around $10,000 for travel and rehabilitation.
"Sadly, most of these families could not secure the money,” she said
Lana and Lama’s mother wishes that her two daughters could both travel to Saudi Arabia, where the charity is based, to get proper treatment for their conditions.
"I implore those people with living conscience to save my little daughters from their intractable health problems," the mother concludes in a broken voice.
To provide for his family Mohamed works two shifts a day in construction, yet it is not enough to cover the costs of essentials.
Wanting a better life for his children, Mohamed feels there is not enough support from the government or society for his two daughters, who always feel isolated and suffer from poor self-esteem.
The two girls do not interact with other children or go to school or pre-school and usually spend their time between the hospital and their home.
There is only one school for deaf children in Gaza City, the Mostafa Sadic Rafie school. Doing its best under difficult circumstances, the school is already packed with 350 students and many families, especially those living in remote areas, cannot afford to commute to and from the school which is located in Gaza city.
Due to their parents’ limited means, Lama and Lana have not even learnt sign language. The family feels that an operation is the girls only hope to get a good education and integrate with other children.
Four-year-old Abdullah Abu Saad could also lose his ability to hear if he does not receive medical treatment on time.
Marwan, Abdullah’s father, said that his son’s chances for treatment are quickly diminishing, while he is forced to stand idle and watch it happen.
"He cannot hear or speak like [other children]. I hope to see him utter words in front of me and become independent when he gets older. I cannot stop myself from thinking of him all the time,” he said.
Five years ago, Marwan had to close his clothing shop because he was drowning in debt. Since then he has been unemployed, making it difficult to raise money to pay for his child’s operation.
Marwan says that Gaza’s deaf children are a marginalised part of the community due to the government's indifference.
Safaa Abu Hamed works at a non-profit for the deaf in Gaza called "Atta," which means “giving” in Arabic. It is one of three centres that offer support and help to deaf children. Around 1 percent of Gaza's 1.6 million people suffer from total or near-total deafness.
Atta strives to help families and children integrate in society, despite the shortage in resources and core services in the besieged enclave.
"We work so hard to teach them sign language and encourage them to communicate effectively with others through body language and facial expressions in order to eliminate the communication barrier between them and their hearing peers," Abu Hamed told MEE.
"Our activities can help them gain skills and confidence through their regular participation in these activities,” Abu Hamed said.
Atta also offers assistance for children who have already undergone the cochlear implant surgery, in order to support and rehabilitate them after regaining their ability to hear.
"The children are given an adequate number of speech therapy sessions, physiotherapy and recreational activities to foster their ability to utter the alphabet properly," added Abu Hamed.
She added that visits are regularly made to the children's homes and schools to ensure that the supportive environment contributes to the overall therapy in which children are involved.
The lucky ones
Manar Msader is an eight-year-old child who was lucky enough to receive the cochlear implant and has joined her peers at regular school classes.
Msader appears to be doing very well in her classes and excels in her exams. She is one of the few lucky children whose family could afford to cover a considerable part of the surgery and travel costs to Jordan where she underwent the operation, while the other part was covered by Atta.
Though she is a shy girl, it is obvious that Msader loves her teacher at the centre.
"I love this place, and my school. I hope that I can become a lawyer when I get older," Msader said.
Abu Hamed proudly said that Msader serves as a shining example for the rest of the children at the centre. She is now in the third grade and she visits the centre three times a week after school to get additional supplementary classes that can help her move forward with her studies.
Some of the challenges the centre faces are lack of resources and medical equipment, which hinders the young children’s development.
"We call on the international humanitarian organisations to financially support the work of the local NGOs which address the needs of this vulnerable part of society,” Yousef Mohammed, a manager at Atta, said.
Mohammed explained how important it is for society to embrace and accept these children. He added that more workshops should be held to raise awareness about the families and others to help them deal with these children, and have a positive impact on their development.
"It is really a privilege to have a role at pushing those young children toward obtaining a better attitude about their lives and community," he concluded.