"We tragically lost our beautiful baby
boy when he was just 12 weeks old after a
heroic fight with Ohtahara Syndrome. Oliver
was the bravest little boy and such a fighter.
Here is his story:
After a normal delivery we were so excited
to finally meet our baby boy. Oliver is
our first child and was so desperately wanted.
Within a few days of the birth the nurses
picked up on some unusual twitches and he
wasn't feeding. As a precaution he was moved
to the Special Care Baby Unit, where he
had lots of tests to rule out common illnesses,
which all came back normal. It was here
that the doctors said these movements were
seizures and he was given anti-seizure meds
to control them. He reacted badly and as
a result starting having convulsions and
breathing problems, which meant he had to
be put in ICU and on life support. This
was the start of a nightmare that no child
should have to face. As the seizures were
unexplained, Oliver had to be transferred
to the Intensive Care Unit at Alder Hey
Children's Hospital in the hope that the
neuro-specialist could help him. For 3 weeks
we travelled the 120 mile round trip to
sit and hold our baby's hand and watch him
being so brave whilst they took daily blood/did
numerous other invasive procedures - still
hoping and praying that he would be ok.
After an unusual EEG it was discovered
he had an extremely rare form of Epilepsy
called Ohtahara Syndrome, which meant a
short life expectancy. After the initial
shock we took strength from our amazing
little boy and decided we would make his
time the best ever. His condition meant
that the seizures were hard to control,
but Oliver responded well to the new meds
and they even managed to get him off the
breathing support and when he was 4 weeks
old we finally got him home with a feeding
tube. A week later he was admitted back
to hospital as he stopped breathing after
being sick. He was put on breathing support,
but then after numerous attempts to reduce
the support, Oliver wasn't able to manage
on his own. We had to make the painful decision
to say goodbye to our child and withdraw
the support. We were put in our own room
and had to sit and watch his struggle to
breathe. After a rocky few hours Oliver
did the unthinkable and pulled through,
and 24 hours later the doctors allowed us
to take Oliver home to spend his remaining
life surrounded by family. The doctors didn't
know how long we would have, whether it
would be hours or days, but in the end we
managed to have another six weeks with our
beautiful boy. In those six weeks his seizures
got harder to control and he was having
episodes where he stopped breathing due
to the seizures. Being the trouper he was
he barely cried and was so brave. In the
end it was just too much for his little
body to take and he finally passed away
peacefully in his sleep when he was just
12 weeks old.
They haven't found any medical reason why
Oliver developed this condition, so we would
ask you to please support us and help us
to raise money for Epilepsy Research UK,
so that they can research into these nasty
and rare forms of epilepsy and hopefully
find a cure so that innocent babies like
Oliver and their parents don't need to go
through what we have."
Donations to Oliver's memorial fund can
be made through this site using the link
below, or via www.justgiving.com.
Donate to the
Oliver Rhys Jane Memorial Fund
Find more about Ohtahara Syndrome here
(please note that this link is to an external
site).
Epilepsy Research UK would like to thank
Duncan and Susie Jane for their involvement
with us. Our memorial funds play an essential part
in funding the charity's research. This
year, they are supporting a project led
by Professor
Mark Richardson, which is exploring
the complex brain networks involved in temporal
lobe epilepsy.
