Bonitas Member Magazine B-Living Issue 2_2019 | Page 10

The last four years were difficult for the couple because
of Ivan’s health issues. ‘He was hospitalised more times
than we can remember, had several operations, visited so
many specialists, had numerous MRI scans, CT scans and
had viral meningitis and encephalitis at 18 months,' says
Brumilda, ‘But, despite these challenges, today he is just
a normal four year old, with glasses. Laughing, playing,
reaching his milestones and giving us more joy than we
could ever imagine.’ The devastating news
Despite this or perhaps as a result of the intense love for
Ivan, this couple decided to have another child and were
delighted when all Kara’s scans were perfectly normal. ‘Sitting outside the theatre waiting, were the longest
hours of our lives. When the audiologist came out,
accompanied by Dr Dos Santos, he just shook his head.
At that moment I felt physical pain as my heart broke for
my child. I sobbed. I could hear my cries echo through
the hallway; people passing stared. It felt as if someone
had punched me in the stomach and taken all my breath
away. My husband cried too, one of the only times I have
ever seen him cry – tears were streaming down his face.'
Kara was diagnosed as profoundly deaf.
Kara is born
‘We were ecstatic; she was perfect and quickly slept
right through the night. She was my angel, I used to keep
her in a wrap, close to me all the time. However, at 11
months, Kara was not sitting. No matter what exercises I
did and tried, she would just throw herself back violently
and refused to be in an upright position. She wouldn’t
eat anything with texture and preferred to just have milk
out of a bottle.'
‘Deep down, I knew something was wrong,’ admits
Brumilda, ‘I was in denial. Hoping and praying my child
was simply a late bloomer.'
Putting off the inevitable
‘After what Ivan had been through, life was just so quiet
now. No weekly doctor visits, no theatres, no heartbreak
and tears and financial stress – I didn’t want this to
change. I wanted to hold onto our perfect little girl for
a little longer.’
The shock of reality
Brumilda was going back to work after taking two years
off to look after her son. ‘We decided that sending Kara
to a day care would stimulate her development. But
when I picked the children up after Kara’s first day, I was
called in by the head of the school and was told what I
already knew, but needed to hear from someone else.
Kara was way behind on her milestones. She needed to
be evaluated as soon as possible. I just sobbed.'
‘I felt really sorry for myself but eventually made an
appointment at the Baby Therapy Centre in Pretoria.
Kara was evaluated by several therapists and the report
said she was on par with an 8 month old. She was
11 months. They ruled out syndromes but were sure there
was something wrong with her ears. We drove straight to
our paediatrician who sent us straight to the ENT.'
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After Dr Dos Santos at Unitas Hospital inserted grommets
in Kara’s ears to reduce the pressure, he said; ‘I have a gut
feeling this little girl is deaf, you need to have her hearing
tested.’ That same day she failed two audio screening
tests and again a week later. An auditory brain stem test
under anaesthesia was advised.
The first surgery
Profound deafness is defined as being unable to
understand speech through hearing, even when sound is
amplified with hearing aids. Kara would never be able to
learn to speak or live a ‘normal’ life.
‘After we’d had a couple of days to process the reality and
had time to research and read up about her condition,
the idea of cochlear implants became our ray of
sunshine. It was scary and we had no idea what to expect,
but one thing was certain – we were going to fight for
our daughter. As it turns out she was the perfect age
for cochlear implants (the younger the better) so we
made an appointment with Dr Burden and the Cochlear
Implant Unit in Pretoria.’
The long journey
It took 28 consultations in four months to obtain a
correct diagnosis and approval for bilateral cochlear
implants! There was also a sense of urgency: If a child has
been deaf since birth and they have not heard or learnt
a language by the age of four or five, they don’t usually
benefit from a cochlear implant.
We had to get Kara implanted as soon as
possible
Due to Kara’s weight and age, two operations were
decided upon, not more than six months apart. Also
medical schemes only provide benefits for one implant
per benefit year, so it is common for children to have
implants done a year apart.