REGION
THURSDAY, JUNE 23, 2022
THE OBSERVER — A3
A family’s life changed in an instant
Baby’s seizure
launches an
ongoing medical
nightmare
By KATHY ANEY
nightmare that persists two
and a half years later.
“We were all so scared,
and it seemed like time was
standing still,” Deona said.
“Oakleigh was having a
grand mal seizure and they
could not get her to stop
seizing.”
East Oregonian
Survival and diagnosis
PENDLETON —
Morrow County sheriff ’s
deputy Todd Siex stiff ened as
a call crackled over the radio
in his police pickup. The dis-
patcher reported a baby was
having a seizure at a Lex-
ington residence.
Siex (pronounced “Six”)
checked the location on his
mobile computer and saw
the address was his home,
where he lived with his wife,
Deona, grown daughter,
Lindsey Hodges, and his
11-month-old granddaughter,
Oakleigh. His stomach in a
knot, he drove from Irrigon
to Pioneer Memorial Hos-
pital in Heppner to meet the
ambulance carrying the little
girl.
Earlier that morning, it
had been a normal day inside
the house. Until it wasn’t.
It was Dec. 8, 2019, and
Deona was preparing the
home for the baby’s fi rst
Christmas. Oakleigh had
come into the world as a
seemingly normal, healthy
baby girl on Dec. 28, and
the family imagined a mag-
ical holiday with the child.
Lindsey had just returned
home from her job as kitchen
lead at Heppner Elementary
School. Her mother cleared
off the top of an armoire
for decorations. Oakleigh
stood in the playpen happily
observing.
Then the baby toppled
over and lay still. The women
rushed to the playpen.
“She was facedown and
unresponsive,” Hodges said.
The initial stillness
erupted into a seizure that
would continue for more than
an hour and launch a medical
She said medical per-
sonnel at the Heppner hos-
pital struggled to intubate the
thrashing baby girl. Deona
rode along on the medical
transport plane to Doern-
becher Children’s Hospital
in Portland, while Todd and
Lindsey drove there in Todd’s
personal pickup. Inside the
airplane, the crew worked to
keep the baby alive.
“When we arrived at the
pediatric intensive care unit
at Doernbecher Hospital in
Portland, Oaks was in bad
shape, barely hanging on,”
Deona said. “She was dehy-
drated, she wasn’t getting
enough oxygen, and her little
body was becoming hypo-
thermic on top of everything
else.”
As medical personnel at
the hospital worked to sta-
bilize the baby, she went
into cardiac arrest. Code
blue. CPR revived Oakleigh
but her condition remained
unstable. Lindsey signed per-
mission to connect the baby
to a machine that pumped
blood outside the body to
remove carbon dioxide and
bring back oxygen-rich
blood. Though Oakleigh ral-
lied, an MRI showed she had
suff ered a stroke during the
procedure.
The family made it home
for Christmas that year, but
they were shaken. The little
girl continued to experience
periodic seizures and her
neurologist eventually diag-
nosed the baby with Dravet
syndrome, a seizure dis-
order that generally begins
in the fi rst year in otherwise
healthy infants and aff ects
an estimated 1 in 15,700
Kathy Aney/East Oregonian
Umatilla County sheriff ’s deputy Todd Siex smiles as he tries to
contain his exuberant 3-year-old granddaughter, Oakleigh Hodges,
on June 11, 2022. Despite having Dravet syndrome, a seizure
disorder, Oakleigh is in constant motion.
a job as a deputy with the
Umatilla County Sheriff ’s
Offi ce. Deona commutes
to her job with the Morrow
County District Attorney’s
Offi ce in Heppner. Lindsey
gave up her job in order to
stay with Oakleigh.
Recently, the three relaxed
in their new Pendleton living
room and refl ected. On the
carpet, Oakleigh drew with
giant crayons. She giggled as
she stuck a sticker on Todd’s
cheek and he fl ashed her a
silly smile. Then she picked
up her pink, sparkly iPad and
listened to “The Boom Boom
Song” for a while. Out in the
yard, she chased bubbles and
cuddled with her cat.
Life with Oakleigh off ers
a huge dose of joy, they say,
along with so much worry.
The little girl, spunky,
fearless and outgoing, loves
to color, swim, be around
individuals. It was a diffi -
cult diagnosis. June is Dravet
Awareness Month, a time
when those aff ected by the
syndrome reach out and try
to describe their world.
Life can be nerve-racking.
A rescue plan hanging on
the family’s refrigerator lists
fi ve chronological things
to do until Oakleigh stops
seizing. The plan is signed
by her pediatric neurologist
at Oregon Health & Science
University.
“To whom it may con-
cern,” the letter starts.
The list starts with
instructions to give a nasal
medication and call 911 if a
seizure begins. If that doesn’t
work, the emergency med-
ical technicians have sev-
eral more strategies to try.
Timing is critical.
Revolving life around
Dravet syndrome
More than two years since
that fi rst attack, the family
has become Team Oakleigh.
Last year, the trio moved
from their beloved Lexington
to Pendleton, where St.
Anthony Hospital is better
equipped and has quicker
access to Life Flight and
Oakleigh already had a pedi-
atrician and therapist.
They adjusted profession-
ally as well. Todd secured
animals and spend time out-
side, running and squealing.
She knows her shapes,
alphabet, colors and animals,
though she struggles with
balance and speaking clearly.
Every seizure knocks her
back developmentally, and
she must slowly make her
way forward again.
“Her speech is probably
behind her comprehension,”
Todd said. “You can see her
counting, recognizing let-
ters. Telling you what she’s
thinking, she struggles with
that. She gets frustrated with
that, too. We can see her get-
ting frustrated with us.”
“The St. Anthony’s
therapy team has been
amazing, and we appreciate
all they are doing for her,”
Deona said. “She is making
progress.”
In it together for
Oakleigh
The onset of a seizure —
which hasn’t happened since
February — means all hands
on deck and sometimes an
ambulance ride, such as the
one during a visit to Portland
last November.
“That was the craziest
ride,” Lindsey said. “When
we turned the corner, every-
thing slid.”
The three adults form a
phalanx of sorts around Oak-
leigh, knowing they must be
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“The morbidity risk of
kids with Dravet syndrome is
very high,” Todd said. “If you
don’t act and you don’t know
how to respond to it, her
chance of dying is very high.”
Lindsey said she worries
she can’t adequately convey
how quickly one must act
when Oakleigh has a seizure.
She’s considering enrolling
Oakleigh in preschool but
conversations with providers
leave her unsure. She wants
to attend school with her
daughter in case of a seizure
but hasn’t received encour-
agement so far.
“They say, this is your
time to have a couple of
hours to yourself,” Lindsey
said.
“They think we’re being
dramatic,” Todd said.
The three adults know
people just don’t understand
the complexities of the dis-
order. Why would they? Until
that day three years ago,
when the call came crackling
across Todd’s police radio,
they didn’t either.
So they focus on Oakleigh
and revel in her take-no-pris-
oners attitude about life.
“Oakleigh is truly our
little miracle,” Deona said.
“She is such a fi ghter.”
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