JULY & AUGUST 2019 | 83and said it was normal. But Gillian
insisted that something was wrong, and
the doctor agreed to do an ultrasound. It
was then that a hydrocephalus (water on
the brain) was diagnosed.
“I was devastated,” Gillian says.
“I could not believe that this was
happening to my baby girl.”
The outcome of a brain MRI (magnetic
resonance imaging) was not good.
Kylie had three cysts (fluid-filled
cavities) inside her brain, and these were
getting bigger.
Had they been linked, only one shunt
would be needed to drain them. But this
was not the case.
A paediatric neuro-surgeon opted to
drain the biggest one; the fluid would go
into Kylie’s little stomach.IMPROVEMENT
Kylie stayed in ICU for three nights, and
when she was able to keep her feeds
down, she was sent to the paediatric
ward, where Gillian was able to stay
with her.
“Here the nurses showed me how to
look after her. It was really scary with
her head bandaged. It was important
that she was kept lying on her back.
The drain helped to reduce the size of
the cyst very, very slowly over the nextfew months. If it drained too quickly,
there could be more problems,” she says.
After two weeks, even though
Kylie’s head looked “different” to those
of other babies her age, Gill started
noticing an improvement.
“I put a beanie on her head, and
nobody asked any questions.”
But she also noticed that even though
Kylie was four months old, she was not
focusing or following movement with
her eyes.
The paediatrician was also worried
about this and sent Kylie to a paediatric
ophthalmologist, who found Kylie’s eyes
to be normal.
Two weeks later, Gillian noticed that
Kylie’s head was another 3cm bigger.
The neuro-surgeon booked Kylie for
another MRI, and this confirmed that
another of the three cysts was growing.
It needed to be drained urgently
because it was putting pressure on the
nerve connecting Kylie’s eyes to the
visual part of her brain, and this was
affecting her eyesight.
A second shunt was successfully
inserted and Kylie came home, looking
perfect again.
“In the new year my mom-in-law
started looking after Kylie for me during
the day,” Gill says. “It’s been wonderfulhaving someone look after Kylie one-on-
one rather than having to send her to
a daycare centre.
“We also started taking her for physio
and occupational therapy to help her
catch up with her milestones.”
Although Kylie was making good
progress, she was still not following
movement with her eyes. She would
turn toward people when they spoke.
The paediatric ophthalmologist
referred Kylie to the paediatric
neurology department at Steve Biko
Academic Hospital in Pretoria, where
she had an appointment for an EEG
(electroencephalogram).
It was then that she was diagnosed
with cortical visual impairment,
a condition that’s caused by a brain
rather than an eye problem.
“The paediatric ophthalmologist
showed us how to do special eye-
stimulating exercises for Kylie,”
Gill says.
“She recognises people by their voices
and feeling their faces and often puts
her hand on your throat to feel the
vibrations of your voice.
“Kylie responds to lights, sparkles,
bright colours and bling.
“Although Kylie is not walking yet,
she is able to get herself around, so we
have to watch her very carefully.
“Her brother and sister play quite
roughly with her, and she loves it. She is
beginning to talk and shakes her head
when she means no.
“Little Kylie is special in every way
and loved by all the family.”
It has been a difficult journey for Kylie
and the rest of her family. And although
some challenges lie ahead, her future
does not look entirely bleak.
Gillian has learnt to take one day at a
time and accepts that “things happen for
a reason”.
“Thanks to social media, I have learnt
from so many other mothers in a similar
situation. I cope day by day as best
I can.” YBSHE RECOGNISES
PEOPLE BY THEIR
VOICES AND
FEELING THEIR
FACES
A whole family of support for little Kylie, pictured here on Dad Sean’s lap. Big sister
Arabella, 5, on the left and Mom Gillian and brother Tyron, 7, on the right.Images: Lizbe Botha