UMATILLA/MORROW COUNTIES
A15 • HERMISTONHERALD.COM
WEDNESDAY, JUNE 22, 2022
A family’s
life changed
in an instant
Local baby’s seizure launches medical
nightmare that persists two years later
BY KATHY ANEY
Hermiston Herald
Morrow County sheriff’s
deputy Todd Siex stiffened as
a call crackled over the radio
in his police pickup. The dis-
patcher reported a baby was
having a seizure at a Lexington
residence.
Siex (pronounced “Six”)
checked the location on his
mobile computer and saw the
address was his home, where
he lived with his wife, De-
ona, grown daughter, Lindsey
Hodges, and his 11-month-old
granddaughter, Oakleigh. His
stomach in a knot, he drove
from Irrigon to Pioneer Me-
morial Hospital 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 De-
ona prepared the home for the
baby’s first Christmas. Oakleigh
had come into the world as a
seemingly normal, healthy baby
girl on Dec. 28, and the family
imagined a magical holiday with
the child. Lindsey just returned
home from her job as kitchen
lead at Heppner Elementary
School. Her mother cleared off
the top of an armoire for deco-
rations. Oakleigh stood in the
playpen happily observing.
Then the baby toppled over
and lay still. The women rushed
to the playpen.
“She was face down and un-
responsive,” Hodges said.
The initial stillness erupted
into a seizure that would con-
tinue for more than an hour and
launch a medical 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.”
SURVIVAL AND DIAGNOSIS
She said medical personnel
at the Heppner hospital strug-
gled to intubate the thrashing
baby girl. Deona rode along on
the medical transport plane to
Doernbecher Children’s Hospi-
tal in Portland, while Todd and
Lindsey drove there in Todd’s
personal pickup. Inside the air-
plane, the crew worked to keep
the baby alive.
“When we arrived at the pe-
diatric intensive care unit at Do-
ernbecher Hospital in Portland,
Oaks was in bad shape, barely
hanging on,” Deona said. “She
was dehydrated, she wasn’t get-
ting enough oxygen, and her little
body was becoming hypother-
mic on top of everything else.”
As medical personnel at the
hospital worked to stabilize the
baby, she went into cardiac ar-
rest. Code blue. CPR revived
Oakleigh but her condition
remained unstable. Lindsey
signed permission 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 rallied, an
MRI showed she had suffered a
stroke during the procedure.
The family made it home for
Christmas that year, but they
were shaken. The little girl con-
tinued to experience periodic
seizures and her neurologist
eventually diagnosed the baby
with Dravet syndrome, a seizure
disorder that generally begins
in the first year in otherwise
healthy infants and affects an es-
timated 1 in 15,700 individuals.
It was a difficult diagnosis. June
Kathy Aney/Hermiston Herald
Umatilla County sheriff’s deputy Todd Siex set his granddaughter Oakleigh down June 11, 2022, after holding her for a minute. Oakleigh, who
has Dravet syndrome, is in constant motion.
is Dravet Awareness Month, a
time when those affected by the
syndrome reach out and try to
describe their world.
Life can be nerve-wracking.
A rescue plan hanging on the
family’s refrigerator lists five
chronological things to do until
Oakleigh stops seizing. The plan
is signed by her pediatric neu-
rologist at Oregon Health & Sci-
ence University.
“To whom it may concern,”
the letter starts.
The list starts with instruc-
tions to give a nasal medication
and call 911 if a seizure begins.
If that doesn’t work, the emer-
gency medical technicians have
several more strategies to try.
Timing is critical.
REVOLVING LIFE AROUND
DRAVET SYNDROME
More than two years since
that first 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 Oak-
leigh already had a pediatrician
and therapist.
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They adjusted profession-
ally as well. Todd secured a job
as a deputy with the Umatilla
County Sheriff’s Office. Deona
commutes to her job with the
Morrow County District Attor-
ney’s Office in Heppner. Lindsey
gave up her job in order to stay
with Oakleigh.
Recently, the three relaxed in
their new Pendleton living room
and reflected. On the carpet,
Oakleigh drew with giant Cray-
ons. She giggled as she stuck a
sticker on Todd’s cheek and he
flashed 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 offers a
huge dose of joy, they say, along
with so much worry.
The little girl, spunky, fear-
less and outgoing, loves to color,
swim, be around animals and
spend time outside, running
and squealing. She knows her
shapes, alphabet, colors and an-
imals, 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 be-
hind her comprehension,” Todd
said. “You can see her counting,
recognizing letters. Telling you
what she’s thinking, she strug-
gles with that. She gets frus-
trated with that, too. We can see
her getting 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 am-
bulance ride, such as the one
during a visit to Portland last
November.
“That was the craziest ride,”
Lindsay said. “When we turned
the corner, everything slid.”
The three adults form a pha-
lanx of sorts around Oakleigh,
knowing they must be vigilant.
No more camping trips in the
mountains. Even driving to the
Tri-Cities takes planning.
“The morbidity risk of kids
with Dravet syndrome is very
high,” Todd said. “If you don’t
act and you don’t how to re-
spond to it, her chance of dying
is very high.”
Lindsey said she worries she
can’t adequately convey how
quickly one must act when Oak-
leigh has a seizure. She’s consid-
ering enrolling Oakleigh in pre-
school but conversations with
providers leave her unsure. She
wants to attend school with her
daughter in case of a seizure, but
hasn’t received encouragement
so far.
“They say, this is your time to
have a couple of hours to your-
self,” Lindsey said.
“They think we’re being dra-
matic,” Todd said.
The three adults know people
just don’t understand the com-
plexities of the disorder. 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-prison-
ers attitude about life.
“Oakleigh is truly our little
miracle,” Deona said. “She is
such a fighter.”
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