On the 14th December 2011, my son had his hearing tested, a referral from his speech therapist. I remember the audiologist saying to me “he has mild hearing loss in both ears, make an appointment to come back in 3 months”.
I remember leaving the Audiology/ENT department at a government hospital, holding Kai’s small hand, walking to the bench and sitting down, holding him in my arms, and thinking to myself “wtf is mild hearing loss!” I was gobsmacked.
I was familiar with deaf and hard of hearing and hearing impaired, but no one has ever referred to hearing loss as mild? I remembered reading about children referred to as profoundly deaf receiving cochlear implants and I knew about hearing aids. But never have I heard anyone referring to a hearing loss as mild.
That afternoon I went to the gym and as I lifted weights, walked on the treadmill, etc. all I wanted was answers – I had so many questions. He couldn’t hear his teacher in class, he struggled with his speech and the only answers I got on that day was “mild hearing loss in both ears, come back in 3 months”. I was overwhelmed by feelings of sadness, anger, fear, uncertainty and impatience!
While at the gym, lifting some weights I bumped into Kai’s teacher at the time and told her the news (I felt like crying). She gave me a hug, right there in the gym, and she said, “you an amazing mom, Kai will be fine because he has you”. These few words and the hug was all I needed.
I left the gym that afternoon and resolved to make it my business to understand this “mild hearing loss”, I wanted to know how something so “mild” could result in my son not hearing in class, but be dismissed with a sideways glance and follow up in 3 months as if it was an insignificant diagnoses for a four year old child.
That night I spent many hours searching for information, relevant to South Africa, to understand the interventions, but I came up with nothing! Everything seemed to focus on the child with severe/profound hearing loss.
Shortly after his diagnoses we had another speech therapy session and I am so very grateful that we have been blessed with an amazing person, Carol Mestern. She informed me that as the parent I have every right to request a copy of my son’s audiogram. She then called the hospital, and asked for a copy to be faxed to her. At our next appointment she explained Kai’s audiogram to me – she explained the different categories of hearing loss and frequencies and his tympanogram results.
Three months later we went back to retest. This time his hearing loss was still mild bilateral, type A (normal) tymps. There were slight differences in these results though, it changed across the frequencies and his reflexes were elevated. I remember asking the audiologist “what now, do we get hearing aids or what, he’s not hearing his teacher in class”, her response “I don’t know, his hearing loss doesn’t meet the hospital’s criteria for hearing aid referral”. I then told her that our speech therapist suggested a FM system. She noted this on his audiogram, but could not promise that we would get one since it would have to be put out to tender?
You won’t believe me, but during a six month period, Kai went for five hearing tests and consultations with an ENT. Each audiogram was different, our results ranged from bilateral mild low frequency loss to moderate loss, it changed from sensorineural to conductive to mixed to conductive. I was informed that he may have otoschlerosis, his hearing may be progressive, he may need surgery when he is older, I’ve been told so many different things during each one of these consultations… At one point he failed an OAE test, twice, but this was never noted on his audiogram. We’ve even been told that perhaps I should look at a Bone Anchored Hearing Aid, I was told by the ENT that if I was on medical aid then he would suggest we get hearing aids…It was six months of constantly having to adapt to new results with no management or intervention offered. It was also months of weekly calls to the audiology department to follow up on the FM System, finding an “in” to directly liaise with supply chain management to hear what the delay was or what the feedback was on the tender process!
All this while my son still had no access to his teacher’s voice in a noisy classroom environment, months of us arriving at school at 7am to spend 20 minutes with him in a quiet corner to do some “school” work, getting the assistance of school staff to take a few minutes after school every day to sit with him and go through some of the work they did in the class. I take my hat off to Fish Hoek Pre-Primary for being so accommodating. Kai’s amazing friends would tell him what the instructions were when they returned to their work tables, they would call him on the playground when the bell rang, just amazing – three years later and he still has the same friends!
Finally in August 2012 I received a call to say that his FM system has arrived, the audiologist didn’t know how to fit it and well, needless to say, our dependable speech therapist assisted us at our next speech therapy session.
It is also during the initial first 3 months of Kai’s diagnoses that I acquainted Dan Schwartz (editor of the Hearing Blog) through a hearing loss support group online. He further assisted me with reading the finest detail on an audiogram, he explained acoustic reflexes, tympanography and the significance of all this information.There were many nights where I would sit online, researching new information based on Kai’s latest audiogram, consultations with Dan and gaining a better understanding of hearing loss, management thereof and most importantly how even a mild hearing loss can impact on development. I researched how other countries viewed mild hearing loss and the interventions offered to children and I asked questions, many questions in online groups.
The answers I received from other parents, based in the States, Australia and the UK, the responses I received from professionals like Dan Schwartz, all pointed at the same thing. My son’s “mild” hearing loss is not “insignificant”, his challenges deserves to be acknowledged, I need to find a way to encourage professionals to STOP and NOT just look at his audiogram, but to look at his audiogram AND his developmental/behavioral challenges (not hearing his teacher in class, unclear speech, etc.) and not be dismissive of his need for intervention and support.
It frustrated the living daylights out of me that I constantly had to push the medical professionals at government institutions to acknowledge that my son’s mild bilateral and fluctuating hearing loss significantly impacted on his development. No parent should ever be treated as if their concerns for their child is overrated, especially when test results, research and behaviour clearly indicates that intervention is necessary.
It is these first six months of Kai’s diagnoses that made me realise how parents of children with hearing loss can feel as if they are invisible, a puppet, just following the instructions of their first point of contact, their first point of information and support – the audiologist – note that your approach to a child’s diagnoses and your empathy will go a long way in preparing any family for their journey to sound or their journey to sign. Please do not treat parents with a dismissive flick of the wrist as you close the folder and move on to your next patient. I understand that working in a government institution cannot be easy, but I ask you to please give a few minutes consideration to the person in front of you the next time you diagnose their child with a hearing loss. Please…
Note that not all professionals are dismissive…my first eight months as a parent of a hearing impaired child was extremely frustrating and I am certain that perhaps the lack of intervention and support was as a result of no protocols being in place for the management of children with mild hearing loss or fluctuating hearing loss, perhaps, I don’t know for certain. All I can speak of is my personal experience.
My advice to other parents, don’t accept mediocre service when it comes to your child, be proactive and do your best to NOT alienate the people you need to work with no matter how frustrating the situation may be, especially if you are limited in your choice as a result of no medical aid and dependency on government institutions.
Never give up!