Some “firsts” make history, and then fade from our memory. That’s certainly not the case with Ali Chathawali, the first child in Illinois to be outfitted with a cochlear implant in 1991.
Now 25, an honors graduate of UIC, and preparing for his wedding this summer, Chathawali has been a patient of the Department and UI Hospital since Arvind Kumar, M.D., performed his historic surgery when he was barely five years old. While many programs, such as the Department’s, now outfit children with cochlear implants as young as 1-2 years old, Chathawali’s procedure – among the first in the United States – was particularly notable back then, for a number of reasons.
Perhaps the most noteworthy aspect of his case was the distance – literally – he and his family traveled to get the care he needed. Chathawali is the son of Ruckiya, a Pakistani woman, and her husband Huseini, from India. When Ali was born in Pakistan in October 1986, Ruckiya said she knew “within 30 minutes” of his birth that something was nor right, she remembered. “I told them there was something wrong with this child. I was afraid he didn’t have any eyesight.”
She was right. Ali had a neurodeafness condition called Usher’s Syndrome, a progressive hereditary retinal degeneration often associated with deafness and serious vision problems. Doctors in Pakistan and India, where the family lived, said the only hope for a “cure” was a cochlear implant, and told the Chathawalis that the U.S. was the only place to get one. Within months of Ali’s birth, Ruckiya had applied for a medical visa, and came with him to the U.S. by the time he was a year old.
Traveling more than 7000 miles to a new land was only the start of the indomitable effort and commitment the family has made over the past 25 years. After coming first to Chicago, where the Chathawalis have relatives, Ruckiya took Ali to New Jersey, where he received early-intervention schooling and was outfitted with hearing aids. Then Huseini gave up his job in India to join the family in Chicago, where they settled, enrolling Ali (now outfitted with hearing aids) at a special-needs school. The entire family – including extended family – learned sign language to communicate with Ali. Having been given little hope for his deafness, the family concentrated on his vision, which was improving. As to finding that cure for his hearing problem, many medical people told them – including a Chicago-area teaching hospital – that they should get used to Ali’s deafness and the reality of having a son with profound hearing loss.
Then they learned of Dr. Kumar, a noted UI neurotologist. “When he came to me, he was totally without any speech,” Dr. Kumar remembers today. “They presented themselves at my door, and said they’d heard about me and wanted me to fix this condition. The father had given up his job in India and had come here to get his son treated. He told me, ‘somehow you have to do it,’” Kumar added. At that time, a device cost about $20,000. Once Dr. Kumar and the UI Hospital cochlear implant team identified Ali as an ideal candidate for a cochlear implant, given the unique nature of his condition, they identified a foundation that had pledged to donate one device a year to a patient somewhere in the U.S. Dr. Kumar wrote to the foundation, made the case for Ali, and got a positive response. Before going ahead with the surgery, Dr. Kumar was a bit concerned, yet hopeful. And he was impressed with the family’s attitude and commitment. “That Ali was already five years old was somewhat troublesome to me,” he noted. “I was not sure how well he would be able to speak because it was so late. And he didn’t have an English-speaking environment, because that was how we would do the speech therapy [in the Department]. But his father told me, ‘we’ll manage.’”
And they did. About six weeks after the surgery, Ali’s cochlear device was activated. For him, hearing for the first time was a bit intimidating. “In the beginning, when I heard some sounds, it hurt a lot. I’d never heard in my life. I couldn’t understand what was going on,” he remembered. But intensive speech/language and audiology care in the Department taught him to learn how to listen for sounds and adjust accordingly. It took about six months to recognize sounds and respond appropriately, he says.Ali’s mainstreaming in school and life was truly impressive, and a family effort to boot. He would come to the hospital early in the morning, before school, for therapy, then again after school several times a week in those first few years after the implant was turned on. “My parents worked very hard for me,” he said. And the focus of all of them on his care and mainstreaming was clear.
His immediate and extended families at his side, Ali learned multiple languages (he speaks three: English, his mother’s native Gujarati, and some Arabic). Huseini had promised Dr. Kumar that they’d manage, and they did, and have continued to do so for two decades, operating a hardware store on the Southwest Side of Chicago for 18 years. Ali is learning the business now. His hearing functions as normal, though like many cochlear patients, he occasionally struggles in group settings due to ambient noise. And he’s been coming back to the hospital regularly, for newer-generation implants and software tune-ups. Dr. Kumar followed him personally until his retirement from the Department in 2002 (he still sees patients at Cook County Hospital), and Ali has had extensive support from audiologists, speech/ language pathologists, and others in the Department for 20 years, a connection between patient and clinicians at one institution that Dr. Kumar and others assert is unique.
“A follow-up of this length is unusual – in a very good way,” Dr. Kumar said. “It’s quite a remarkable story. It is a really good outcome, and the persistence of Ali and the family led to this success.” David Klodd, Ph.D., Ali’s audiologist and head of the Division of Audiology, agrees. “This case shows the parents’ incredible commitment and attention to detail. It’s a joint effort – if you don’t have proper parent involvement, patients can sometimes fail to maximize the benefit. That’s one of the reasons why Ali has been so successful.”