“My journey with sensorineural hearing loss started when I was three years old, and I would complain that people were whispering around me. It certainly has been a struggle for me, trying to understand speech since words and letters forming them were out of my hearing range,” said Jerome.
Sensorineural hearing loss is a common hearing loss affecting the inner ear. In Jerome’s case, though he struggled with hearing and relied heavily on lip reading to communicate, he could understand speech and conduct an in-person discussion in quiet environments. However, following through is hard for him unless the conversations are in a group setting.
“I grew up in France in a family of five and both my parents were academics. My dad is French, and my mum is Irish. Hence, we were exposed to both languages early on and were always surrounded by books. I believe I had my first hearing aids when I was 8, but always hated them because I felt I was different from my schoolmates, and they never really helped,” Jerome said.
His impairment did not hinder Jerome from learning and developing his career in science and research. He graduated with a Ph.D. in molecular and cellular biology from the University of Lyon in France, a master’s from McGill University, and post-doctoral studies in New York. He worked as a research scientist with A*Star Singapore in 2004 and was a patent scientist in a law firm.
“My parents did not treat me differently from my siblings and I went to a normal school. I am not sure how I managed but I guess I used the notes written on the board and the books to learn,” he said.
But these academic achievements were not always smooth.
“The one year I spent at McGill University for my master’s was an uphill task but I did not dare ask for help at that time. After graduating, I moved to New York University for my post-doctoral studies. In New York is where I started to realize that working in fast-paced environments would be difficult when a lot of information is conveyed orally,” he recalled. Nevertheless, by following up and reading scientific articles, he managed to overcome it and did well.
His biggest hurdle, however, was diminished self-confidence.
“I was getting a bit frustrated because I found that with my hearing loss, I was losing confidence and I would always have a hard time getting promoted. When I had to do presentations in front of hundreds of people at scientific conferences, I had numerous humiliating encounters where people would ask questions at the end of my talk. I could not hear them and therefore could not answer them,” Jerome recounted.
“I decided to leave academia and got an opportunity to work as a trainee patent attorney in a law firm in Singapore. My journey was cut short when my wife had an opportunity to join her company’s headquarters in Switzerland. What was supposed to be a year assignment lasted three years. I managed to land some temporary assignments in yet another field, which was regulatory for an MNC. Since I hadn’t used the phone in more than 20 years, I once again struggled with the communication aspect of the job,” he added.
The COVID-19 pandemic exacerbated his daily communications and interactions.
“My wife and I were back in Singapore and shortly after, the COVID-19 pandemic started with mask-wearing made mandatory. I realized that I couldn’t understand anything anymore, as I could not do lip reading. My speech which until now was kind of acceptable was getting bad when I speak through the mask. I could see that people had a hard time understanding me,” he recalled.
Just like how spectacles help with eyesight, hearing aids are just the same.
“I tried new hearing aids each time the technology evolved, always hoping and being promised that the technology would help me, but it never really did,” Jerome said.
Hence, he would remove them after some time. He also enquired about cochlear implants but was told that it was only restricted to profoundly deaf or legally deaf patients, especially children.
“So, I go back to try a new pair of hearing aids, but the ones I was given were not helping. It has become increasingly frustrating for me as I felt that I was wasting my education and getting a job that I can thrive seem so far fetch," Jerome added.
At this point, Jerome said he is already experiencing low-frequency hearing loss, which means he cannot hear the rumble of a car engine or have a phone conversation.
He then sought medical help and found an audiologist who recommended consulting an ENT specialist and a cochlear implant.
“My first meeting with Jerome was in July 2022. He had bilateral progressive post-lingual hearing loss which began in childhood. With severe to profound hearing loss, he was not deriving benefit from hearing aids,” Dr. Liu said. Jerome has been using a hearing aid since he was eight.
Bilateral progressive post-lingual hearing loss is a type of hearing loss that affects both ears and gradually worsens over time. It occurs after the patient develops and acquires speech and language skills, usually in adulthood or later stages of life.
Though Jerome experienced hearing loss at three, using a hearing aid since young helped him acquire language and learning skills.
“So even if it was detected early as a child, the treatment then was to support his hearing so that he could still learn, complete formal education in a normal school, and try to maintain good verbal communication. Jerome has done very well despite his hearing impairment,” she added.
However, it does not stop his progressive decline from hearing and understanding sounds, including speech, in both ears.
Cochlear or hearing implants may be considered for patients with severe hearing loss, congenital or acquired, as the condition is unresponsive to medications or hearing aids.
“These are designed to help those with severe to profound sensorineural hearing loss regain their ability to hear speech again and have a left-right directional auditory perception,” Dr. Liu explained.
Without the implant, Jerome would have great trouble communicating with his wife, family, and peers. These could only result in frustration, compromised work performance, and adverse effects on his emotional and mental health.
“In the long term, clinical evidence shows that patients with severe to profound hearing loss are five times more likely to be at risk of dementia,” she added. Jerome turned 50 this year, and with age, his condition puts him at a higher risk of dementia.
Furthermore, in a recent paper published in Lancet in May 2023, hearing aid use in people with hearing loss was associated with a risk of dementia similar to those without hearing loss.
“If the principle of hearing rehabilitation can help lower the risk of dementia, then cochlear implants which aid patients with severe to profound hearing loss should also have the similar benefit of lowering the risk of dementia and cognitive decline,” Dr Liu said.
To check that Jerome was suitable for surgery, he underwent a CT scan of the temporal bone to see if his cochlea was patent.
"Most severe to profound hearing loss patients can be considered for a Cochlear implant. However, patients born without an auditory nerve, patients with a tumor in the auditory nerve or patients with aberrant cochlea anatomy are not suitable for the implant." Dr. Liu explained.
“The CT scan also gave information on any potential surgical pitfalls such as enlarged vestibular aqueduct syndrome (EVAS) which can make the surgery technically difficult as cerebrospinal fluid can impede full insertion of the cochlear implant electrode sometimes,” she further explained.
“Dr. Liu took the time to explain the procedure and the technology behind the implant. her key advice is that it will not be an easy journey. Getting implanted is just the first step but I would need to work hard to relearn language and to hear,” Jerome said.
Jerome went ahead to have both ears implanted in a single surgery.
From hearing everyone sounding like Darth Vader, Jerome said he now hears sounds he never heard before - the clatter of cutlery, water running, birds, children, ringing of bells, and phones.
“Suddenly my world becomes very noisy,” he mused. “I never realized the extent of my hearing loss. The journey of relearning language is very important for me, and I know it requires consistent efforts to reacquire hearing abilities and speech. Imagine, my brain hasn’t processed these sounds for almost 50 years! I need to teach it to understand what it’s hearing,” he added.
These days, Jerome is noisily talking and speaking, encouraged by his friends telling him his articulation has remarkably improved. He looks forward to further improvement and enjoying everything life has to offer with his newly acquired hearing.