Fall 2011 - Kosair Children's Hospital

Dean Lavenson Photo
Hope
against a lifetime
of ‘nevers’
Sean Caruso recently celebrated his fourth birthday. He
and his parents, Norma and Tommy Caruso, had much to
celebrate thanks to the lifesaving surgery Sean underwent at
Kosair Children’s Hospital in March 2011.
From the time he was born with a severe brain condition,
Sean suffered from debilitating seizures and a number of
neurological issues. The Carusos were told that Sean would
likely never crawl, never walk, never talk, never feed himself
– never be able to lead a normal life. It seemed as though Sean
was facing a lifetime of “nevers.”
Sean lacked the nerve fibers that connect the left and right
sides of the brain. The right side of his brain was dying, which
affected his ability to speak and move, and it contributed to
frequent epileptic seizures. He communicated through a few
hand signs when prompted by his mom or dad.
Six months after hearing the long list of nevers and many
therapy sessions later, Sean met with the neurology team at
Kosair Children’s Hospital.
Initially, Sean’s seizures were treated with medication. But
the combination and large dosages created additional issues.
His seizures continued to grow stronger and occur more
frequently. Every time he would experience a seizure, he
would lose much of what he had learned since the last one.
“It was a never-ending, vicious cycle,” Norma said. “We
knew his little body couldn’t keep it up forever.”
According to Vinay Puri, M.D., director of child neurology
for Kosair Children’s Hospital and the University of Louisville
School of Medicine, surgery was the only option in order for
Sean to have a meaningful quality of life.
“Given the level at which Sean’s seizures were progressing,
performing surgery was the only
treatment that would allow us to stop
him from seizing and give him a chance
at life,” Dr. Puri said.
Sean was scheduled for a
hemispherectomy, a rare surgical
procedure in which one-half of the
brain is removed or disabled. Less than
200 hemispherectomies are performed
each year worldwide.
“When the procedure was first
explained to us, we were a bit
unnerved. It’s hard to imagine having
half of your brain removed and still
being able to function,” Tommy
said. “Sean’s doctors explained that
sometimes removing part of an organ
that has been severely damaged is better
than having a damaged organ.”
This particular epilepsy surgery is
especially effective in children under
age 6, because the part of the brain
that remains can compensate for what
is missing, according to William C.
Gump, M.D., pediatric neurosurgeon,
Norton Neuroscience Institute.
Sean’s surgery marked the first
hemispherectomy performed at
Kosair Children’s Hospital.
“Up until this point, eligible patients
for this procedure had to travel far
distances for treatment,” said Shefali
Karkare, M.D., pediatric epileptologist
and director of the pediatric epilepsy
surgery program at Kosair Children’s.
The six-hour procedure involved
removing the right side of Sean’s brain
and implanting a shunt to drain fluid.
Sean Caruso of Crestwood, Ky., with parents
Norma and Tommy Caruso and sister C.J.
“We could tell a difference almost immediately,” Tommy said.
“One of the first things Sean signed after the surgery was the
sign for ‘boo-boo,’ pointing to the boo-boo on his head.”
Before the surgery, Sean’s parents would have had to coax him
to communicate.
Sean’s road to recovery involves ongoing speech and physical
therapy. According to Tommy, they have been given a clean slate.
Today, Sean engages in conversations and is able to
communicate with his family through sign language and some
verbal sounds. Sean has not had any seizures since his surgery.
We used to hold our breath when we
would go to wake Sean up in the morning,
not knowing what to expect. Now we go
in with a smile excited to start the day
with our miracle boy.”
–Norma Caruso
His vocabulary has increased, and he’s walking and talking more
every day.
“We used to hold our breath when we would go to wake Sean
up in the morning, not knowing what to expect,” Norma said.
“Now we go in with a smile excited to start the day with our
miracle boy.”
“People ask me how it feels knowing we saved Sean. I tell
them he’s the one who saved us,” Tommy said. “He is a kind,
sweet little boy, and a great example of courage and quiet
strength. Every day, he reminds me of the kind of person I need
to be.”
–Michelle Robey
Kosair Children’s Hospital expands
pediatric epilepsy treatment options
The department of child neurology at Kosair Children’s
Hospital and the University of Louisville School of Medicine
recently expanded epilepsy treatment capabilities to improve
outcomes for families and children living with epilepsy.
A larger team of pediatric neurologists, epileptologists,
neuropsychologists, neurosurgeons, epileptic nurse practitioners
and additional state-of-the-art monitoring technology and
surgical capabilities give families like the Carusos access to the
best medical care possible without having to leave their home
and support system.
A new epilepsy monitoring unit, funded by the Children’s
Hospital Foundation, is equipped with continuous video
electroencephalogram monitoring. This and other new testing
help doctors understand exactly where seizures start in the brain.
For more information about the epilepsy program at
Kosair Children’s, visit KosairChildrens.com. Would you
like to help support initiatives such as this? Call the Children’s
Hospital Foundation at (502) 629-8060.
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