Savannah Douglas, 12, has been struggling with hearing loss issues since she was six. Her behaviour back then, was very much misunderstood, and for four years, the little girl was suffering in silence, not knowing how to convince the people around her about her disability. As a result, she wasn't doing well in school, and was bullied by her classmates, and often punished by her teachers. Her parents, who did not suspect that their daughter was in fact facing a medical condition, took her teachers' word and believed that she was doing all she could to avoid school.
Savannah's hearing loss diagnosis finally came 4 years later when she was 10. She had single-sided deafness (SSD) or unilateral profound-level deafness, and that explained her behaviour in all those years.
"We only found out about the true nature of her inability to hear on one side when she was 10 years old. We had taken her to a doctor for something and she told the doctor that she couldn't hear from her left ear at all. That's the first time, we discovered that she had hearing issues, specifically SSD.
"Previously, we thought she had made it up, so naturally when we found out that it was for real, and that she was going through all that hardship by herself, as a parent, I felt angry at myself, and everyone else for not seeing it as it was," says Savannah's mother, Geraldine.
With that began an inspection to determine the cause of Savannah's SSD. Initially, she was suspected of having a brain tumour. In some cases, hearing loss could occur due to acoustic neuroma, a type of tumour that sits on the balance and hearing nerves that go from the inner ear to the brain. After a scan and other checks, the doctor deduced that Savannah's deafness was most probably due to a viral infection.
Today, Savannah is 100% deaf with permanent nerve damages on one side, with normal hearing on the other side.
The Struggle is Real
Once this was established, Savannah's parents transferred her to another school to start over, and over time, she was able to make friends and find her self.
"She started making friends at the end of last year, and that's a huge progress for her. Previously, she was very down, and didn't have self-confidence. She was alone in her distress. We, as a family, are doing all we can to make her as independent as possible, and her sister Sahara has been a great help for her," explains Geraldine.
However, it is still a struggle as the effects of SSD is still quite misunderstood by others around her. A side effect to Savannah's SSD is a balance issue known as vertigo. It is a condition that brings about a sense of a room spinning and dizziness. A violent vertigo attack can cause vomiting spell, and keep a person sick for days or weeks. Geraldine says Savannah also experiences vertigo, and often gets into trouble with her current school principal for it.
"The principal doesn't understand this condition that stems from SSD, and often thinks that we are unnecessarily getting medical leaves for Savannah. She gets picked on by the principal for this. So we are just helpless on that front.
"However, her teachers are very supportive and encouraging, and she has learnt to built up her confidence. It has taken her 5 years to get to where she is today," she says, adding that it helps to have amazing paediatrician and ENT doctors to help them manage the condition as well.
There should be wider awareness on SSD, Geraldine strongly feels, because hearing loss is a medical emergency afterall, every person with hearing issues should be taken seriously.
"We often get this remark about 'but her other ear is fine'. Yes, it's fine, but the consequences of having complete deafness in one ear are life-changing, and definitely changes one's quality of life. We need to remember and understand that because it is a disability that affects her relationships, self-love, career in future, and even personal safety on a daily basis," she says.
SSD was only recently recognised as a disability in Malaysia, and according to Dr Chai Chiun Kian of Sunway Medical Centre Velocity (SMVC), this disability status is new, and some doctors might not be aware of it.
We spoke to Dr Chai and Dr Tang Mee Ling, also from SMVC about SSD which was listed as a disability by Malaysia’s Social Welfare Department (JKM) in early 2019.
How is SSD treated?
There are two ways to achieve binaural hearing – one is by rerouting the sound from the poor ear to the good ear, and the other is to restore the auditory function by inserting an implant.
Rerouting the sound can be done through air (air conduction device) or through bone (bone conduction device). For an air-conduction device, there is the CROS (contralateral routing of signal) system. The patient wears a behind-the-ear or in-the-ear device that mimics a hearing aid at both the ears. The device worn in the non-serviceable ear will collect the sound signal and transmit it wirelessly to the device worn at the normal hearing ear. This will improve sound localisation and overall loudness.
The bone conduction system involves surgically implanting a device at the skull bone behind the non-serviceable ear. A processor is attached to the implanted device externally and is responsible for collecting sound signals and transmitting them through the skull to the cochlea of the normal ear. Alternatively, a person can use a stick-on bone conduction device which does not require surgery. The device is placed behind the ear by an adhesive adaptor, which transmits the sound signal from the ear with poorer hearing to the opposite good ear through the skull.
Restoring auditory function can only be achieved by performing surgery. There are two types of surgery – cochlear implant or brainstem implant, depending on the site of the lesion/damage. A cochlear implant bypasses the damage at the inner ear while a brainstem implant bypasses the damage at the inner ear and auditory nerve.