For Shs500m, she was able to hear again

So much has happened since Eleine Asab’awebwa, 11, lost her hearing nine years ago. Her parents Eddie Mukaaya, 42, and Edith Asingwire, 39, agree that the hearing impairment would not only change Asab’awebwa’s life but that of the entire family. They, therefore, embarked on a journey to restore her hearing.
Her father, travelled to the United States with Asab’awebwa to have the cochlear implant procedure for one ear conducted since it is not done locally.
“We parted with $60,000(about Shs200m) that we raised through family and friends. The money catered for hospital bills including post operation services. A doctor [in the US] had donated his professional fee and also through him we got a company that donated a device from Cochlear America, the manufacturers of the implants, ” the father of two narrates.
Because the money did not include transport to the US, Mukaaya says they had to sell most of their property to raise money for air tickets. Luckily, a friend had offered accommodation for the time they would be there.
For a year, Mukaaya had to leave his farming job in Kampala to take care of his daughter who had to undergo numerous tests for six months before the operation, after which she would undergo rehabilitation for another six.
“She started hearing as soon as they switched on the first implant. She also had to undergo both speech and language therapy which is critical for someone to be a successful implant user (auditory-aural therapy). They train your brain to understand the sound it gives,” he narrates.
“It was definitely a joy that she started talking shortly after the first implant was put. Eventually, what had brought us [to the US] had happened. Her hearing had greatly improved even with one implant.”
However, Mukaaya wanted to see her do better. The desperate move to raise money to have the second implant done landed him a well-paying job in one of the companies in the US. Through this, he was able to facilitate the cost of the second implant which was carried out in 2012. Although it came at a higher cost, his job offered insurance which catered for most of the bills.
Every day, the then three-year-old would have to be dropped at the rehabilitation centre for continuous auditory-aural therapy that would go on for months.
Since it was hard for Mukaaya to work and take Asaba for the therapy everyday, his wife and second daughter joined them to fill the gap.
With the second surgery done and Eleine able to speak and hear normally, the family returned to Uganda which ended their four-year stay in the US.

Maintenance
Maintaining the implant is another hurdle the family has to endure since no company supplies the implant spare parts including the batteries and cable locally.
Mukaaya says it is not cheap to maintain the device and they have to engage a supplier in the US to supply them with back-up batteries.
Also, some parts on the implant break or wear out which requires the parents to prepare at least $4,000(aboutShs14m) a year for maintenance.
On her part, Asab’awebwa has grown to take responsibility and ensure the implants last longer. For example, she has learnt to recharge the batteries herself and during night time, she disconnects the implants to avoid unnecessary damage.
“When this happens, she stops hearing and her speech changes. It’s audible but not understandable,” her mother says.
At school, the Primary Six pupil is as active as any other student. However, she faces a challenge when she sweats and the implants get blocked due to sweat or when her colleagues inquisitively disconnect her cables. For this time, she stops hearing completely.
“When she cannot hear or clearly comprehend a concept in class, she becomes sad. We talked to the school administration and all her classmates and teachers about her condition. Academic materials are reviewed in advance so she knows what will be discussed,” her mother says.

Further assistance
To manage her condition more effectively at school, her mother says they are engaging the school to come up with an individualised academic plan.
She, however, says that although such a condition would have broken Asab’awebwa, she is instead strong and more resilient.
The mother says the 11-year-old has been trained and developed advocacy skills and is willing to share her story with others.

Too much medication the cause of Asab’awebwa’s hearing loss

Born in 2006, Asab’awebwa started losing her hearing when she was 18 months old. This was as a result of a number of medicines she was taking at the time.
Although children are meant to be born at 40 weeks, the couple’s first born was delivered at 24 weeks (due to pregnancy complications) with a hole in her heart. However, upon getting treatment, the hole closed up.
“When she matured, she started crawling but delayed to speak. At 18 months we realised she had delayed to speak but later she started murmuring words such as mama albeit slowly. We then noticed that you had to shout or speak loudly for her to hear what you were saying. We decided to visit a doctor who told us she was starting to lose her hearing as a result of the medication,” Edith Asingwire recollects.
Their first attempt to save Asab’awebwa’s hearing was, however, futile as the hearing aids that were recommended to amplify the sound and enable her hear did not work to their expectations. “She would even pull them out (the hearing aids) that one time she flashed them in the toilet,” her mother says.
“It was until we met a visiting doctor from the US at the International Hospital in Kampala in 2008 during one of the hospital visits, who confirmed that she was a good candidate for a cochlear implant,” she adds.
As courtesy, the American doctor offered his professional fee to carry out the surgery free of charge at a hospital in the US and also connect them to a supplier company of Cochlear implants in Nairobi who offered them one free implant.