Our Little Super HERO’s Journey to a World of Sound

Our little super HERO, DJ de Jager, was born on 6 March 2017. As any new parents we were extremely excited and overwhelmed by this new addition to our family. Initially we were not at all worried when he didn’t pass his new-born hearing screening, as we were told that 70% of new-borns fail their first screening due to amniotic fluid in their ears. After poor head and neck control was diagnosed at 3 months, we started tracking his milestones and realised that he was not responding to sounds. A follow-up screening was recommended, and he failed again. That was when we started suspecting something was very wrong.

We went through a process of in depth ABR (Auditory Brainstem Response) and ASSR (Auditory Steady State Response) tests, after which it was confirmed that DJ had profound hearing loss in both his ears. He didn’t respond to any sounds below 110 dBs

We were referred to an amazing (and I believe the best) medical team of experts (Audiologist, Speech Therapist and ENT Specialist) who were beyond excited to hear of DJ. Not because he was deaf, BUT because his problem was picked it up so early. Research studies confirmed that the earlier a baby can be fitted with Cochlear Implants the better the outcome. Language and speech development is crucial in the first 3 years of life.

We had a difficult decision to make, and time was ticking. Each day that DJ was without hearing had an adverse effect on his speech and language development.

We had 2 possible options:

  1. Sign language route;
  2. Auditory Verbal route – where he could be fitted with Cochlear Implants IF he was a suitable candidate.

We wanted to ensure that we gave him the best possible future and started with the approvals needed for cochlear implant surgery.

This approval entailed the following:

  • Hearing Aid Trial Period – followed by 3 Audiograms to see if he could benefit from hearing aids;
  • MRI & CT scans to ensure that both Cochlea’s and auditory nerves were in place and not deformed or damaged;
  • Psychological Evaluation to ensure parent commitment;
  • Medical Aid Approval;
  • ENT Surgeon & Anaesthetist approval (physical check-up and 8kg weight)

He received some benefit from the hearing aids, but this was still not enough to help him achieve normal speech and language development. With his hearing aids set on the maximum volume, his hearing loss was still classified as severe (50-70 dB). This made cochlear implants the only option to achieve “normal” hearing.

The biggest obstacle was to get full approval from our medical aid. Most medical aids only partly cover one implant per year. In these cases funds need to be raised to cover Cochlear Implants. Bilateral Implant surgery roughly costs in the region of R700 000. We, on the other hand, had amazing assistance from our Medical Aid and following a few motivations and council meetings to discuss DJ’s case, we were fully approved to go ahead with BOTH implants, all costs covered.

His surgeries were scheduled 2 weeks apart provided that DJ was in top health and that he weighed at least 8kg.

 

 

 

 

 

 

Even though the surgeries were very stressful, we had the best support and medical team, and everything went amazingly well. The ENT surgeon could implant the best electrode (for the best quality of hearing), with perfect NRT (Neural Response Telemetry) signals from the brain (acknowledging the receipt of sound via the implant). His recovery was remarkable, and he was his happy, smiling self about 2 hours after both surgeries.

 

Fast forward to activation day, 28 November 2017. It was a very emotional, but rewarding day when DJ heard our voices for the first time and we could tell him what his name was and that we loved him so very much, even though he didn’t understand much. He was only 9 months old at the time, and he still needed intense speech therapy to teach him how to listen through his cochlear implants and to make sense of the sounds.

His initial reactions were very limited, and we knew we needed to be patient. Our expectations were realistic as we were coached by the team that this was not a “quick fix”. Intensive, long-term therapy and mappings were required to ensure the best quality of hearing and the best possible outcomes.

We were told that cochlear implants are amazing technology and that it will make a difference, BUT we never imagined how incredibly rewarding this journey really would be. DJ said his first word exactly 2 months post activation, which was already more than what we ever expected this early into the process. “Mamma” was maybe not my first name, but it will forever be my favourite name.

He is also thriving in Speech Therapy (Whispers Speech and Hearing Centre) and already progressed to a 9-month-old hearing age. His overall hand-eye coordination and fine motor development is incredible and even ahead of his peers.

He absolutely loves his mapping sessions with the Audiologist every 2 weeks at the Pretoria Cochlear Implant Unit (PCIU). These sessions are to configure and test the 22 electrodes and to ensure that he has access to the best possible quality of sound. His Audiologist calls him the “show-off” and we experienced just that when we tested him in the “hearing booth” exactly 11 weeks post activation. He astounded us with his Audiogram and reacted on a level that falls in the NORMAL HEARING range (20 dB). His Audiologist and Speech Therapist described it as incredible to get such a normal audiogram this soon after activation.

Needless to say, we are extremely grateful and proud of how far we have come in this short journey, and beyond excited for everything that DJ will still achieve in his life.

The Lord has blessed us with an incredible little boy that changed our lives in the most unexpected way we could ever imagine. We could never have asked for anything better as we experienced amazing miracles in the past year and a love that is unconditional.

“YOU ARE GOING TO MOVE MOUNTAINS LITTLE ONE, BECAUSE THERE IS NOTHING IN THIS LIFE THAT YOU CANNOT DO”

Watch this space…the best is yet to come….

 

Anri de Jager

 

 

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