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To implant or not (Part 1 of 2)

To implant or not (Part 1 of 2)

by | May 22, 2023

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To implant or not - Part 1 of 2

by Bianka Wasserman

Oli did really well with his hearing aids. We started slowly as to not overwhelm him. Of course it was a HUGE adjustment for him to go from not being able to hear much, to all of a sudden having access to sound. In the mornings especially, Daniel and I would put on his hearing aids and then switch them on at the same time. There is a slight delay and then, when he could hear, those blue eyes opened so wide and he would get a big smile on his face. 
 
We had made the big decision to put our immigration on hold. IF we decided to have Oli implanted with cochlear implants, we still had medical insurance in South Africa. We did bi-weekly online speech therapy sessions with Jenni from the CHAT Centre and at the same time started exposing Oli to some baby sign.
Baby sign was something that I decided I wanted to do with my baby when I was pregnant. Oli was only four months old but we started with the signs for more and milk and by the time he was six months he had his version of it. 
 
On March 10th 2020, we went to The Carel du Toit for a parent support group meeting. We were both very nervous purely because of the unknown. We had no idea what to expect. I think we walked away from there feeling it was exactly what we needed. We listened to parents tell stories of their kids that were older and already through the cochlear implant process. We also listened to other parents who were in a very similar part of the journey as we were; the initial diagnosis and deciding if cochlear implants was the route we wanted to take.
 
There was a mom there, Mia, who I had previously chatted to on the phone. Ironically, both her daughter, Charli and Oli had the same due date but Charli arrived two weeks before her due date and Oli two weeks after his due date. Charli was diagnosed with bilateral profound hearing loss. The two of us set out, reaching out to audiology and cochlear implants units in the USA on their opinions regarding early implantation and the three different cochlear implant brands. We wanted to make an as informed of a decision as possible. 
 
Daniel and I had chatted about the way forward and interestingly the decision to implant or not was not the most difficult for us but rather which brand to go with. This was after all a decision that would impact him for the rest of his life. We knew that we had time to make the decision as cochlear implantation was only considered at 8 or 9 months if a child is a candidate in South Africa, we had plenty of time, or did we? 
 
Late March 2020, we went into a hard lockdown! What did this mean in South Africa? We were pretty much confined to our houses and could only leave to get food and for medical appointments or of course if you worked as essential workers. 
 
With the unknowingness of COVID and what it entailed and what the hospitals would look like in September when Oli would be 8 or 9 months old. Oli’s team decided that paediatric cochlear implantation would be streamlined. We no longer had time to make a decision. I was completely overwhelmed, anyone who knows me, knows that I can be a bit indecisive at times. My thoughts would rush from ‘this is great, early implantation is great”, to “he is so small, can his body handle the surgery”, to “what happens if we don’t”?
 
Before any decision could be made, we had to determine if Oli was a candidate.
We waited until he was six months old, in fact the day before, on May 8th, 2020, we went to Panorama Hospital to have his sedated ABR, CAT-scan and MRI. 
 
Tune in next week as I share about the day of testing in To Implant or Not Part 2 of 2. 
The Diagnosis (part 2 of 2)

The Diagnosis (part 2 of 2)

by | May 8, 2023

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The diagnosis - part 2 of 2

by Bianka Wasserman

My son is deaf. I will be honest, it took me a long time to be able to use that word. If people asked about Oli’s diagnosis I would always give them the specifics like, “he has severe to profound hearing loss in his right ear and profound hearing loss in his left.” Why was I so scared of this word? I truly feel it was the fear of the unknown. I had never met anyone that was deaf. I hated that I felt this way, but it’s so interesting as I have spoken to many mommies that have felt the same. It’s really a perception that I wish to change and the only way to do that is through awareness. 

We had two weeks before our next set of appointments. So much happened in that time for all of us. Oli was sitting up on his own and he started eating solids and teething! I had to go in for a surgery due to complications from the c-section and Daniel had to go back up to Joburg to finish work. All while trying to process what was going on. I really beat myself up and constantly questioned if it was something that I did wrong? Did I eat something during the pregnancy, or not get enough of a specific vitamin or mineral? Was it all the bleeding that I had during the pregnancy? Was it the long birthing process? The NICU stay? The antibiotics given at birth?

 
What was it?
 
To this day we don’t know the cause of Oli’s hearing loss, but my need to know is also not there anymore. I now believe, feel and know that he is perfect the way that he is. 
 
On the 18th and 19th of February, we were back in Julie’s office at the Hearing Institute and doing more ABR tests. These results would confirm the degree of hearing loss and assist with the programming of the hearing aids that Oli would receive on the 20th of February. 
 
Oli’s hearing aid fitting was incredible. We were warned to not have any expectations as far as reactions that he may have. As a new parent going through this, I caution you to not google these reactions because of course Google only shows those picture perfect moments. We were lucky, Oli gave a, as Julie put it “a textbook reaction”. His eyes got big and he turned his head in the direction of our voices. The moment is almost too big to put into words. There were a lot of tears, happy, sad, overwhelmed, relieved tears. 
 
During that week we also went to The Carel du Toit Centre for the first time. At our first meeting we had a social worker, two audiologists and an early interventionist/speech therapist present. It was very overwhelming to say the least. They introduced a little girl to us who had been ‘late’ implanted and it gave us hope that Oli would also use spoken language and have access to sound just like us. It was incredible to witness and gave us hope.   
 
We also had our first session with Jenni, our early interventionist and speech therapist. What an absolutely angel. She was and still is way more than a speech therapist. That first meeting and really every meeting, she handled us with such care. She could see how lost and overwhelmed we were and she just guided us. She had us listen to the hearing aids, so that we had an idea what it sounded like for Oli. It was also where she introduced specific sounds to us, which later we came to know as the Ling sounds. 
 
That incredibly exhausting week felt like an emotional rollercoaster ride.  The reality of it all set in. We had more tests done, Oli’s diagnosis confirmed, got his hearing aids fitted and learnt how to use them, met his team and got an understanding of what our new normal would be. Just three weeks later, something happened to complicate things just a little bit more…Covid-19
 
Tune in next week for Part 1 of 2 of To Implant or Not. 
The Diagnosis (part 1 of 2)

The Diagnosis (part 1 of 2)

by | May 1, 2023

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The diagnosis - part 1 of 2

by Bianka Wasserman

After Frikkie spoke those words to us, the rest of time with him was a bit of blur. I remember him saying something about 40 years ago only having sign language as an option for communication,  but technology today had changed that.

I remember thinking to myself, ‘profound’… ok, so that’s not deaf, is it?

He didn’t say deaf.

Daniel, my husband, was looking to me to explain what this all meant and honestly, I didn’t know what it meant. Tears and getting out of there seemed to be both of our immediate reactions. 

Driving back to the hotel, my first instinct was to call my parents. I called my mom and she and my step-dad got in the car and drove an hour and half that night to be with us. My dad lives in the USA so a 10 hour time difference at the time. He was in a meeting and through tears I told him very quickly, “It seems Oliver can’t hear and we going back in the morning for more testing!” I think he was a bit shocked but also very pragmatic.  I remember him saying “I’m sorry my darling, let’s see what tomorrow brings”.

We got back to the hotel room, packed up all our stuff as my mom’s friend’s apartment was available and we could stay there together with my mom and step-dad. 

Seeing my mom, brought another round of tears.

Not much sleep happened that night between feeding our almost 3 month old, googling what profound meant, what the way forward was and managing all the thoughts, not to mention the feelings. Had Oli never heard my voice? Never heard me sing him to sleep? Had he never heard me say I love you? Will he ever be able to hear me say I love you, will he ever be able to say I love you?  

The next morning, at 6:00, we met Frikkie and another audiologist named Julie at the Hearing Institute. In order to do more tests it meant trying to do it before load shedding (rolling blackouts) started at 8:00. Daniel and I, were pretty emotional and running on little to no sleep and probably a bit too much caffeine. This combination didn’t make for very relaxed parents to try and get Oli to sleep for another ABR test. Thankfully, my mom, Oli’s Ouma (grandmother in Afrikaans) was there to settle him and get another ABR test done. I remember, at one point, my mom turned to me and said, “take a photo”, you are going to want to remember where you started when you are further along with this journey. I took a photo, it is a very blurry photo but I suppose very fitting for the moment.

Moments later, the second ABR was done. The second test, in about 12 hours and the results were the same. Oli was diagnosed with profound hearing loss in his left ear and severe to profound in his right ear, Oli is deaf. 

 

Check in again next week to read or listen to Part 2 of 2 of The Diagnosis.

 

***ABR Test: An auditory brainstem response (ABR) test is a safe and painless test to see how the hearing nerves and brain respond to sounds.

A hunch (part 2 of 2)

A hunch (part 2 of 2)

by | Apr 24, 2023

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A hunch - part 2 of 2

by Bianka Wasserman

My reaction?? 

I am embarrassed to say, I screamed and cried,

I felt absolutely gutted, I knew he couldn’t hear. Everyone else’s reaction, “no man” I am sure its ok, it will be ok, it’s probably water in the ear canals. What I know now is that the one thing that was said that’s true is, “it will be ok”.  In fact, everything now is more than ok. But my hunch, to me, in that moment, felt like more than just a hunch. 

We got an emergency appointment with an ENT at Charles Barnard Hospital in Cape Town the next morning. She did some tests and looked in his ears. She confirmed fluid in his ears and to use  ear drops for two weeks and then to go and see an audiologist. She phoned the audiologist while we were in her rooms. She told the audiologist that the baby looks healthy and has a bit of fluid behind his ear drums. Then she repeated herself twice, using the same words, she said, baby does babble but is very loud, yes the baby does babble but he is very loud. My brain went hmmm….why repeat that when she just said it’s only fluid behind the ear drums. My hunch was still there. 

Two weeks went by and the time came for our audiology appointment. In those two weeks, anytime there was a noise, we would all look for a response from Oli. Of course we saw many, or at least what we thought were responses, but was he responding to sound? 

On the 4th of February, 2020 we drove from Hopefield to Belville where we would stay the night so that we could be at the Hearing Institute first thing the next morning.  Frickie, the audiologist, called us just as we arrived at the hotel and apologetically told us our appointment would need to be rescheduled due to load shedding (aka rolling black-outs). Daniel just explained to him that was impossible for us as we had just driven so far to be here.

Things worked out the way that they should. Frickie had us come to the Ear Institute that evening. It was just the four of us in the building, all the lights off except in the rooms that we were using. Oli had never been a great sleeper but that evening he slept so well. Which meant all the tests could be done. We first went into a room on the ground floor and had a test done to check that the eardrum was working well. Then another test to check the little hairs in the cochlear. Frickie was not very chatty but with cochlear hair test, he got even quieter, you could tell something was wrong. I was trying to calm my hunch. He then had us go upstairs and do a more in-depth test, which later we became to know well as, the ABR test. When walking into that upstairs room neither Daniel or I realised that we would walk out feeling something we didn’t even know how to begin processing. Oli lay in my lap and just slept while he had electrodes stuck on his head. The tests started and every now and again Frickie would turn around and look at Oli and smile at me. Every once in a while Oli would react with an eye flutter. Eventually, Frickie turned around in his chair, he put his hand on my arm and looked at both Daniel and I and he said, “I am sorry, it seems the loss is profound!” 

Many hearing parents will tell you that this news is devastating and the reason being because most of us don’t know anyone who is deaf or with hearing loss. More than 90% of all children born deaf or with significant hearing loss are born to hearing parents. As much as I was feeling devastated, I also felt an overwhelming feeling of “My hunch was right, I wasn’t crazy, there was something wrong with his hearing.” If I hadn’t trusted my hunch or mothers intuition, or ‘mom-gut’ we would not have had a diagnosis so early on.

Stay tuned to find out more about what happened next on our Oli pop’s Journey to hear through play.

A hunch (part 1 of 2)

A hunch (part 1 of 2)

by | Apr 16, 2023

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A hunch - part 1 of 2

by Bianka Wasserman

A hunch, mother’s intuition, listening to your gut?

We have all heard this before. It’s something that I have experienced many times in my life and now even more so as a mom. How do I describe it?

It’s a feeling and with that feeling there’s a knowingness. Unfortunately, I have often second guessed this said ‘knowingness’.


Why?


Well usually because of doubt. This occurs after I have voiced my concern to someone and they have planted a seed of doubt in my knowingness. This is never done on purpose but usually to try and make me feel better. The comments often used like “no man, it’s nothing, don’t worry” or “you are just being a paranoid first time mom.”

My pregnancy with Oli wasn’t the easiest in the first trimester.  It got physically easier in the second and third trimesters, but, as a family unit, we were under a lot of stress.  My husband Daniel and I had decided in October 2018 that we wanted to immigrate to the USA.


We had been wanting to conceive for a couple of months and in February 2019 we decided to just put a pin in it and try again after we immigrated.  On the morning after we made this decision, a pregnancy test, came back positive. To say that I was thrilled is an understatement. 

Since I was experiencing a lot of bleeding in my first trimester, I was eventually put on bed rest for a threatened miscarriage. Thankfully, into the second trimester, I was doing much better. I closed my business and we put our house in Paarl and in Joburg on the market. At 36 weeks, we packed up our Paarl house and moved to Muzienberg in Cape Town to be close to our chosen midwifery team. 

On the 9th of November, 2019, after 41 weeks and six days of pregnancy, after 21 hours of labor and an emergency cesarean, Oli made his appearance. When they showed him to me I just remember these really big eyes looking right at me, like right at me, a blink every now and again but no tears or crying. This of course freaked me out, why wasn’t he crying? Oli wasn’t breathing on his own and so had to spend his first two nights in the NICU.

The morning that we were leaving the hospital, all packed and ready to go, an audiologist came into the room. She said that she was here to do the new born hearing screen. All I wanted to do at that point was get out of the hospital. Oli was even already strapped into his car seat. I politely said to her no thank you, we would do a screening at a later date. I remember walking away from that woman thinking, “hearing, I didn’t know that was something to think about”; let’s be honest, I started worrying about hearing from that moment.

If you have kids, you know the newborn phase has more than enough things to worry about with feeds and wet nappies and sleep…or rather not much sleep. I remember putting Oli to sleep at about a month old in a bassinet in my moms lounge. Leha, my moms lovely house keeper moved an iron grate across the tiles and it made an awful, loud noise. Oli didn’t flinch and I remember saying to Leha, isn’t that weird he didn’t even move. Her reply was, “he is just sleeping deeply.” Fair enough, I brushed off my concern. 

The holidays came and there was a lot of noise and yet my baby slept through it all, when he slept that is. Again, many family members reassured me that their kids did the same and it’s such a good thing for them to get used to the noise. On January 8th, 2020 however my husband experienced first hand, what I was worried about. We were sitting in the little house we were renting in Hopefield, on the West Coast of South Africa. The door was open and the wind blew and slammed it shut. We both got such a big fright and Oli, well he didn’t even flinch. I said to Daniel, slam the door again, again no reaction. We then got a pot and spatula and starting banging and still no reaction. 


My mom and step-dad, Daniel and myself making noise around this 2 month old baby and there was not even a flinch of an eyelid. 

Stay tuned next week for part 2.