17 August 2017
There are not enough words to say thank you – Mum praises Bristol Royal Hospital for Children staff after infant son seizures left him needing intensive care
Four and a half month old Adam Ayub can now look forward to
leading a normal life, following an operation to stop his
debilitating seizures.
Mum Barbara Sygnecka, from Gloucester, noticed Adam's first
infantile spasm in May this year and took a video to show her
midwife. She was advised to go to the emergency department, where
they could carry out an EEG (electroencephalogram - a test which
records brain activity) to find out whether there was anything to
be worried about.
After several tests they were referred to Bristol Royal Hospital
for Children for an MRI (magnetic resonance imaging) scan, which
confirmed that there was a brain malformation.
Adam was started on anti-epileptic medication and discharged
from hospital, but as his seizures grew progressively worse the
medication had less of an effect.
The family were readmitted to Bristol Royal Hospital for
Children and different medication was tried, but his seizures
progressed to the point where Adam was holding his breath, fitting
every two minutes.
During this time he was moved to the paediatric intensive care
unit (PICU) within the hospital, so that he could be intubated and
receive one to one care.
"It was like his brain was on fire, fitting so often and not
being able to concentrate on anything else, even the slightest
touch could cause so much brain activity," explained Barbara.
"The team in the intensive care unit were amazing, they not only
took great care of my son but of us as parents as well."
It came to the point where an operation called a
hemispherotomy was the best course of action.
Mike Carter, the paediatric neurosurgeon who performed Adam's
operation, explains: "A hemispherotomy is a major operation that
disconnects the seizing hemisphere of the brain electrically from
the rest of the brain, whilst leaving the brain tissue intact.
"It represented a considerable challenge surgically and
anaesthetically, because of Adam's small size and also because he
was so critically unwell.
"However, we were hopeful that there would be a good response
and, because of his young age, that the other areas of his brain
will eventually be able to take over the function of the damaged
section.
"Epilepsy surgery can revolutionise the lives of young people,
and in cases like Adam's, it can literally save a life."
After being in the operating theatre for 10 hours, Mike Carter
was able to deliver the news that the surgery had been
successful.
"Dr Carter was brilliant, he was so positive and has such a big
heart, it was great to have everything explained so clearly," said
Barbara.
Since the operation in early July, Adam has gone from strength
to strength. He is now breathing independently and, after a few
seizures in the first two weeks following the operation, has not
had an episode since.
"There are not enough words to say thank you to everyone," said
Barbara. "PICU, the neurosciences team, physios, speech and
language, porters, I'm so grateful for all of them"
"Ward38a made the hospital feel like home, even during the worst
of times.
"I know our journey is not finished, but this place has given my
son the chance of a normal life.
"The staff at Bristol Royal Hospital for Children will always
have a special place in our hearts."
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