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Billee.....
Billee, our precious baby girl came into this world one week
early on 19th October 2007 after a very non eventful
normal pregnancy.
Her birth was very calm, controlled and easy. I’m not sure if
this was down to my fantastic Obstetrician or the fact that Billee
was so much lighter and had a smaller head than the other 2!
Having 2 older sisters she was spoilt from the start and every
one adored her.
For the first 6 weeks of her life every thing appeared to be ok
and every one commented on how beautiful and petite she was.
Shortly after she was 6 weeks old we noticed that she wasn’t
making eye contact with us or fixing and following objects too well
and her GP referred her to a Paediatric Ophthalmologist.
The Ophthalmologist thought she simply had a delay in her vision
and it slowly started to improve.
When Billee was 5 months old we noticed that she wasn’t trying
to reach out for objects or use her hands at all. In fact it was as
if she still didn’t know her hands belonged to her and her
Paediatrician decided to do an MRI scan.
Like us he wasn’t expecting there to be any thing seriously
wrong and assumed her lack of motor skills was due to the delay in
her vision.
With the results of the MRI our world fell apart and our lives
were changed forever……………………
Billee’s brain hadn’t developed properly and was smoother than
it should be.
She was diagnosed with Lissencephaly.
Lissencephaly, which literally means smooth brain,
is a rare brain formation disorder characterised by the lack of
normal convolutions (folds) in the brain. It is caused by defective
neuronal migration, the process in which nerve cells move from
their place of origin to their permanent location.
The surface of a normal brain is formed by a complex series of
folds and grooves. The folds are called gyri or convolutions, and
the grooves are called sulci. In children with lissencephaly, the
normal convolutions are absent or only partly formed, making the
surface of the brain smooth.
The prognosis for children with lissencephaly varies depending
on the degree of brain malformation. Many children show no
significant development beyond a 3- to 5-month-old level.
The size of a child’s head with lissencephaly can be smaller
than normal and they also nearly always suffer from seizures and
swallowing difficulties.
Lissencephaly is a genetic brain disorder and Billee's
neurologist assured us that there was absolutely nothing we could
have done to prevent or cause this.
Billee started having seizures when she was 10 months old and we
found out through an EEG that she had Hypsarrhythmia.Hypsarrhythmia
basically means that there is constant abnormal brain activity
which causes seizures.
Billee was put on a combination of drugs including Epilim,
Topomax and a steroid treatment called Prednisone.
She has been on these drugs for over 2 months now and they have
been very successful in not only controlling the seizures but also
eliminating the Hypsarrythmia.
The down side is that Billee has become extremely drowsy and
sleepy and as a result has become very unaware of both us and her
surroundings.
We are currently in the process of weaning her off some of the
drugs in the hope that we will get our little girl back but also at
the same time keeping the seizures under control.
This has been a very hard time for our family as she has had to
be admitted to hospital a number of times with the added problems
of pneumonia, low body temperature and very low heart rate.
Billee so far has managed to cope with eating pureed food very
well. She does however have to have her fluids thickened as she
aspirates on thinner liquids.
Aspiration can lead to chest infections and pneumonia, which is
the main cause of death in children with lissencephaly.
Many children therefore end up having to have a gastrostomy tube
fitted for feeding.
Billee still has difficulties with her vision. Whilst the
structure of her eye is totally in tact and undamaged just what her
brain interprets it is seeing is unknown.
Her ability to fix and follow objects has improved slowly and
hopefully will continue to.
Whether Billee will be able to sit up, crawl, walk or even
communicate with us in the future remains to be seen but we believe
the more intense and frequent stimulation that Billee’s brain
receives and the more opportunity we give her to learn to develop
the more chance she will have of doing this.
Because we feel this way about her development and progress
Billee is currently involved in a programme with the Australian
Institute for the Achievement of Human Potential (AIAHP). AIAHP are
an organisation that aims to ‘rescue’ brain injured children and
help them to reach their full potential.
This programme and various additional therapies that Billee will
require in the future (some of which are only available in the USA
or other overseas countries) can be very expensive.
For this reason we feel the need to tell you of Billee’s story
and her fight to survive in the hope that as many people as
possible will help us and make it possible for her to lead as near
‘normal’ life as possible.
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