Hemispherectomy patients gather for fun and support
Posted: 06/08/2009 08:12:29 PM
PDT
At
right, Dr. Gary Mathern, a neurosurgeon from Mattel Children's Hospital
UCLA, holds a hemispherectomy patient at the first-ever Picnic for West
Coast Hemispherectomy Families in Griffith Park. (Watchara Phomicinda /
Staff)
LOS ANGELES — A light breeze whips
through Griffith Park, as Dr. Gary Mathern cradles 19-month-old Addisyn Ross in
his arms.
The doctor smooths Addisyn's tawny
curls as she cries, while he talks lightly with her mother, Krissta Ross of
Stockton.
Mathern, a pediatric neurosurgeon at
Mattel Children's Hospital UCLA, is visiting the park on happy business. He's
reuniting with several of his former patients amid a rare gathering of
individuals — mostly youth — who share something in common: They're each living
with half a brain.
Rachel
Waters and son Aiden of Azusa during the first annual Picnic for West Coast
Hemispherectomy Families at Griffith Park in Los Angeles on Saturday, May
30. (Watchara
Phomicinda / Staff)
Each, for different reasons, has
undergone a hemispherectomy, a radical operation in which half the brain is
removed or disconnected to treat severe seizure disorders.
At
the first-ever Picnic for West Coast Hemispherectomy Families on Saturday, May
30, more than a dozen "hemi" patients and their families from all
over California
assembled
at Griffith Park for an afternoon of celebration and support.
The picnic was sponsored by The
Hemispherectomy Foundation, an emerging non-profit dedicated to those impacted
by this type of brain surgery.
Among the event's key coordinators
were Monika Jones, a San Gabriel native, and Rachel Waters, an Azusa resident
who serves as Western Regional Director for the foundation. Jones' son Henry,
2, and Waters' son Aiden, 5, both have had recent hemispherectomies.
"This particular surgery, and
everything that goes with it — when you find out someone else went through the
same thing, it's like an immediate, family connection," Waters said.
It was only a few weeks ago when
Ross learned her daughter is a candidate for a hemispherectomy, she said.
The Saturday gathering marked her
family's first meeting, albeit an informal one, with Dr. Mathern, and Addisyn
may become one of his patients.
Addisyn was born with Sturge-Weber
syndrome, a rare neurological disorder in which abnormal blood vessels form on
the surface of the brain. Facial port-wine stains, glaucoma and seizures are common
among individuals with the progressive disorder.
For Ross — and for Addisyn — the
meet-up of hemi families meant, in a word, "hope."
Only a year ago, this type of
regional conference was nearly unheard of, mostly because there was no
governing body like The Hemispherectomy Foundation to bring the disjointed hemi
family, scattered across the nation in disparate cities and towns, together.
A national hemispherectomy reunion,
sponsored by the John M. Freeman Epilepsy Center at Johns Hopkins Medical School
and Hospital in Baltimore, has taken place every three years for the past 12
years.
But in the drawn-out interstice
between national conferences, to whom could a family facing hemispherectomy
surgery turn for support? For those whose children suffer dozens — sometimes
hundreds — of seizures a day, their concerns could not afford to wait.
In June 2008, Cris and Kristi Hall
of Aledo, Texas, founded The Hemispherectomy Foundation after discovering a
dearth of resources in the wake of their daughter Jessie's hemispherectomy.
The 6-year-old had endured months of
uncontrollable seizures before she was diagnosed with Rasmussen's Encephalitis,
a progressive neurological disorder, characterized by loss of motor skills,
paralysis on one side of the body, brain inflammation, dementia and mental
deterioration.
"We found out there's this 
disease
that's basically eating half her brain," Kristi Hall said. "We didn't
have anywhere to turn — we had nothing."
A Yahoo! message board dedicated to
hemispherectomies "ended up being our lifeline," Hall said. Among the
most active families on the discussion group, a movement was born.
After Jessie's surgery on June 11,
2008, the Halls joined with family friends, John and Caren Jennings, to shape
foundation with a mission to offer encouragement to affected families, to raise
funds for research and to provide financial assistance for struggling families.
Now, a year later, the foundation is
preparing to transport a young boy from Bosnia to a United States hospital for
surgery, said Holly Paauwe, specialty director for hemimegalencephaly (HME) and
cortical dysplasia.
Julia Rodarte, 2,
plays with a giant bubble with her dad Jose Rodarte, of Monrovia, during
the first annual Picnic for West Coast Hemispherectomy Families at Griffith
Park in Los Angeles on Saturday, May 30. (Watchara
Phomicinda / Staff)
An Indianapolis mother, Paauwe knows
how significant this surgery will be for the Bosnian family. Her own daughter,
Avery, almost 4, has HME, a condition characterized by an enlarged brain
hemisphere.
The decision to proceed with a
hemispherectomy is a critical one; The procedure is only considered among
patients with severe neurological disorders, and only after medication has
proven ineffective at stopping seizures.
"The word I use is
absurd," Jones said, "when they tell your what your child has to have
done."
And sometimes, as in the case of her
son Henry, who also was born with a very rare kind of HME, multiple surgeries
are required.
"You don't just say 'yes' or
`no' to this surgery," said Kellie Ongie-Vasquez of Valencia, who sought
out five neurosurgical opinions before she and her husband Frank chose a
hemispherectomy for their 14-year-old son Ali'i. Ali'i suffered an in-utero
stroke that wasn't diagnosed until he started having seizures at 6 months old.
Since his hemispherectomy in
February 2008, Ali'i has not had a single seizure.
But improvement after such a radical
surgery is not always clear-cut. Despite three separate surgeries, Paauwe's
daughter still experiences seizures, but they are less intense and less
frequent than before.
To equip families in the
decision-making process, The Hemispherectomy Foundation opens the lines of
communication between patients with the same or similar disorders.
"I don't think I would have
been able to make it psychologically without that group," Jones said.
"People you hardly know become your rock."
And at gatherings, families like the
Rosses, as yet untouched by a hemispherectomy, can experience what the
foundation calls "hope in one hemisphere."
Some arrive for the first time
feeling alone in the world, Hall said, but they leave armed with facts,
physician recommendations, therapy programs, newfound playmates for their
children, and a virtual Rolodex full of people who've walked more than a few
miles in their shoes.
"For parents, it does them so
much good to see other post-op kids, and to see them walking and talking,"
Paauwe said. "It's like coming home."
For more information, visit
www.hemifoundation.org or e-mail rachel@hemifoundation.org
(626) 962-8811, Ext. 2472