Summer 2009

Connection
In this issue: 04  |  Keeping Families Together
Our Home Care team does
08  |  Research Changes Lives

Our immunologists are

12  |  A Guiding Hand

Patient navigators help

pioneering treatments — and families overcome language
“whatever it takes” to help seeking a cure — for primary and cultural barriers to get
families care for their medically immune deficiency diseases. the best care.
fragile children at home.
 From Where I Stand

Kathi Goertzen
Journalist and nightly news anchor
KOMO-4 TV, Seattle

I am a cheerleader. It took only one visit to Seattle Children’s

to touch my heart forever. I first came
as a journalist to cover the story of a
boy who received one of the first liver
transplants performed in the Northwest.
My second visit was as a friend and
volunteer.
Over the last 25 years, Children’s
has given me more than I could ever
give back. The greatest gift has been
the honor of getting to know some
very special patients and their families,
whose courage and determination have
become a beacon of light for me as I
face my own health challenges.
And behind each of these children
are the people who provide care.
Their dedication and compassion isn’t
scripted for any camera. It’s alive every
hour of every day — whether or not
anyone is watching.
Take Dr. Jim Olson. He’s quietly
working on a type of paint that lights
up cancer cells in tumors. One day,
his work will transform the way brain-
tumor surgeries are performed —
helping people like me and countless
others.
Children’s isn’t just a hospital for
children. It’s an integral part of our
region — a place that seeks answers
for all of us.
I tell anyone who will listen to get
involved! Give! Do what you can for
Children’s. Without it, we would be
far less of a community.

02
Summer 2009

“ If we don’t stand up for

children, then we don’t
stand for much.”
— Marian Wright Edelman

Connection Team
Contents
Jennifer Fisch
Executive Editor

David Perry Feature Stories

Vice President of
Marketing and
Communications
04 | Keeping Families Together
Susan Blake
Director of Operations Our Home Care Services team does “whatever
Foundation and
Guild Association
it takes” to help families care for their medically
fragile children at home.
Allison Broadgate
Marketing and
Communications Manager
08 | Research Changes Lives
Kathi Elliott
Brand and Production Manager
Our immunologists are pioneering treatments
— and seeking a cure — for primary immune
feature story writers
Elizabeth Austen deficiency diseases.
Lisa Brihagen
Brad Broberg

contributing writers
1 2 | A Guiding Hand
Elizabeth Austen Patient navigators help families overcome
Lisa Brihagen
Keith Mack language and cultural barriers to get the
design
best care.
Methodologie, Seattle

cover and feature

photographer In Every Issue
Nancy LeVine

photographers
Del Abrejera 1 4 | What’s Happening at Seattle Children’s
Brian Baxter
Paul Dudley
Elliott Bay Productions 1 8 | On the Scene
Aileen Kelly
Mirror Image Studios
Mark Ruffo, PhD
Tami Smith
22 | Calendar of Events

23 | At a Glance
connection
Vol. 11 no. 2
© 2009 Seattle Children’s, Seattle, Washington.
All rights reserved.

cover
Children’s Home Care team helps transplant patient
Camren McDonough, 2, take part in everyday toddler
activities like playing outdoors with mom, Melody, and
Uncle Tyler, and even scraping his nose.

To learn more about Seattle Children’s, visit www.seattlechildrens.org.

If you’d like to stop receiving Connection, please contact us at 206-987-2153
or at askus@seattlechildrens.org.

03
 Seattle Children’s Connection Summer 2009 Keeping Families Together

04
Keeping Families
Together
Seattle Children’s has a “whatever it takes” approach to helping
families care for their medically fragile children at home.

In many ways, Abby Graybill is a typical Whatever it takes

5-year-old. Ask her what her favorite
Graybill and Miller’s determination
cartoon is, and she’ll tell you Scooby-
to bring their daughter home was
Doo. Her favorite color? Pink. Her best
mirrored by providers at Seattle
friend? Thirteen-year-old brother Brent,
Children’s. And that’s where Home
who can always make her laugh.
Care Services stepped in.
But ever since Abby, her mother and
Home Care is the department within
brothers Brent and Riley were hit
Children’s that does whatever it takes
head-on by a negligent driver Sept. 15,
to help families successfully transition
2005, near Shelton, Wash., she has been
from hospital to home by providing
paralyzed from the neck down. She
education, expertise and any necessary
needs constant care and a mechanical
child-sized equipment — for as long as
ventilator to breathe. Her pink bedroom
it’s needed.
is filled with stuffed animals and
Miller was still in a wheelchair when (Above) For more than two years, respiratory
computerized medical equipment.
she and Graybill began the three-month therapist Cheri Kuhnhenn has provided regular
Twenty years ago, children as in-home teaching and support to make it
process of learning to operate and
medically fragile as Abby rarely lived possible for Tanya Miller and Jesse Graybill to
troubleshoot all of the equipment that
at home. The life-sustaining equipment care for their daughter Abby at home. “Cheri’s
Abby’s life would depend on at home: much more than my equipment lady,” says
they depend upon was too bulky, and
the portable ventilator to breathe for Miller. “She’s very dear to all of us.”
insurers wouldn’t pay for care and
her, the suction machine to keep her
equipment in the home. It took
airway clear, the cough-assist machine (Left, on page 4) A head-on collision severed
sustained lobbying by parents — and Abby Graybill’s spinal cord and left her a
to reduce the risk of pneumonia, the
significant technological improvements quadriplegic at the age of 2. Now 5, Abby is
oximeter to monitor pulse and oxygen growing up at home, surrounded by the people
— to make it possible for such children
saturation, the different pumps and she loves best — like older brother Brent.
to live safely at home.
tubing to supply nutrition and
For Abby’s parents, Tanya Miller and
hydration.
Jesse Graybill, the obstacles to caring
As the date for Abby’s discharge
for Abby at home were considerable.
approached, respiratory therapist
The learning curve for providing 24-hour
Cheri Kuhnhenn worked with Miller
care to Abby was steep — and Brent,
and Graybill to set up a mini–intensive
Riley and Miller were still recovering
care unit in their home and teach them
from their own severe injuries.
how to provide round-the-clock care.

05
 “ I run into roadblocks everywhere except with Children’s
Keeping Families Together

Home Care — they’ve been nothing but great.”

— Tanya Miller, Abby’s mom

When Kuhnhenn discovered that all
of the family’s belongings had been
damaged while in storage, she and
her husband Joel gathered furniture
donated by her Home Care colleagues
and delivered it to the family’s
Kirkland home.
That kind of “above and beyond”
behavior is typical of her experience
with Home Care, says Miller. “I deal
with a lot of nursing and government
agencies to get the support we need
for Abby, and I run into roadblocks
everywhere except with Children’s
Home Care — they’ve been nothing but
great — from Matt Lange, who brings
Summer 2009
The right fit therapists. “We really don’t want
people to be stuck in their houses.”
When it comes to medicine and medical
Kelsie Hunter is part of a team of
supplies, there is no such thing as “one
registered dietitians that provides
size fits all.” More than 1,600 families
phone support to more than 750
rely on Home Care to find and provide
families caring for children with special
just what the doctor prescribed, in a
feeding needs — everything from
size that fits their child.
specialized bottles to individualized
“Most home care providers don’t
nutritional fluids for intravenous
carry small enough cannulae (tubes)
feeding.
for the nose, or oxygen that can be
“We don’t just ship it to them and
calibrated down to the teeny tiny
expect that they’ll figure it out — we
amounts needed by infants,” says Karen
take the time to get to know them
Rancich-Demmert, who leads the Home
and what their needs are.”
Care team. “We do.”
In addition to proper fit, portability
Focus on mobility

is essential. “When I’m evaluating new

Abby’s oxygen every month, to Cheri,
equipment, I try to bring in the
who brings us peace of mind.” Melody and Justin McDonough’s
smallest, most efficient things with
Kuhnhenn visits monthly to check bags are packed. After 16 long days
the longest battery life that we can
Abby’s equipment, and always and nights at Children’s, they are
possibly get, so families can have the
remembers to bring a caramel latte to almost ready to go. Thrilled that their
most mobility,” says Jane McTevia, who
Connection

Miller, who, because of her duties at 2-year-old son Camren’s liver was
supervises the Home Care respiratory
home, rarely gets to enjoy a coffee out.
“They know they can call me
anytime, but now they hardly ever do,”
says Kuhnhenn.
Abby hasn’t had a single
hospitalization in the two years she’s
lived at home, which is unusual for
patients as vulnerable to infection as
she is. Kuhnhenn says it’s a testament
to the skill her parents have developed.
“Tanya and Jesse have basically
learned to be nurses and respiratory
therapists.”
Seattle Children’s

Because of a chronic shortage

of skilled in-home nursing (which
Children’s does not provide), Miller
and Graybill have taken on all of Abby’s
care themselves. They work 12-hour
shifts — Miller takes days, Graybill
takes nights — because a ventilator-
dependent person requires constant
care. Miller has no doubt that it’s worth
it: “No one can provide the care for her Home Care provides Abby Graybill with two 12-pound portable ventilators — one at her bedside and
another on her wheelchair — to enhance her mobility. Respiratory therapist Cheri Kuhnhenn (right)
that we can. Not even the doctors — makes monthly visits to maintain them and check in with mom Tanya Miller (left). Just a few years
and they’ve even told us that.” ago, ventilators weighed upward of 35 pounds.

06
After a transplant to treat a rare liver disease, Camren, 2, is ready to get back to regular toddler activities. But first, Home Care nurse Teresa Taylor
(above, center) teaches Camren’s mother Melody McDonough to administer IV antibiotics. The little backpack (above, right) holds Camren’s formula
and the machine that pumps it into his stomach — giving him the freedom to be on the move again, and even get an "owie" on his nose.

successfully transplanted, they are
eager to transition to Ronald McDonald
House, the first step toward going
home to Helena, Mont.
But before Camren can be released,
the couple must learn to safely
administer IV antibiotics through the
port in Camren’s chest and feed him
through the tube in his nose.
Over the course of the next
90 minutes, Home Care nurse Teresa
Taylor coaches the couple through
the first dose of IV antibiotics. Then,
Taylor hands Melody McDonough a
little black backpack that will hold
Camren’s formula, pump and feeding
tube. McDonough exclaims, “That’s it?
So small!”
The backpack is little enough for
Camren to wear himself and gives him
a level of mobility that wasn’t possible
when he was being fed intravenously.
Camren is still in the early stages of
post-transplant recovery. His dad Justin
McDonough sees Camren’s discharge
from the unit and the mobility of the
backpack as signs of freedom for
Camren.
“For the past six months, he’s
had someone within three feet of him
24 hours a day. This is a new life for
him — he can be a normal kid.”

Home Care Delivers, No Matter What

Derek Metzer and his team of drivers, including
Jesse Potter (left), braved ice and snow during
the storms of late 2008 to deliver essential
medications and supplies when commercial
delivery companies wouldn’t.
Children’s Home Care Services ships more than 2,000 packages of
medications and child-sized supplies every month, using overnight delivery
services or its own small fleet of trucks.
When back-to-back snowstorms in December 2008 dumped a foot of
snow on western Washington, UPS and FedEx stopped delivering to the
hardest-hit areas.
The Home Care team triaged the most immediate needs: liquid oxygen,
perishable medications, hydration and essential supplies. For more than two
weeks during the holidays, Derek Metzer and his team of five drivers chained
up the trucks, packed shovels and hand-delivered the necessary items to
families as far as Sedro-Woolley and Olympia. For the hairiest locations, staff
used their own four-wheel-drive vehicles, and often loaded up again at the
end of the day to reach still more patients on their way home.
Metzer matter-of-factly sums it up: “When kids need it, we bring it.”

07
 Research Changes Lives
Research Changes Lives

For half a century, immunologists at Seattle Children’s have

worked to understand — and find the genetic causes of —
primary immune deficiency diseases. Their pioneering work
is advancing treatments and closing in on a cure.
Summer 2009
Connection

Dr. Troy Torgerson’s lab at Seattle Children’s is one of only a few in the nation that can analyze proteins made by genes to determine whether children
Seattle Children’s

like 2-year-old Michael Vogel — and many adults — have primary immune deficiency diseases.

Michael Vogel runs through his house
screaming with delight, his 4-year-old
cousin fast on his trail. At age 2, he
is a social butterfly who loves to
roughhouse and show off new skills
with a flourish of his hand and a
proud “ta–da!”
Michael’s antics give no hint to his
fragile condition.
Out of the 30,000-plus genes in his
body, one has a defect that stops his
immune system from functioning
normally, making him susceptible to
severe infections. That gene, called
STAT3, is one of about 160 genes that
researchers have linked to deficiencies
in the human immune system. In
Michael’s case, the mutation in his
STAT3 gene causes him to have a
rare condition known as hyper-IgE
syndrome.
Immunologists at Seattle Children’s
have been studying inherited and
congenital conditions such as hyper-
IgE syndrome for more than 50 years.
They’re called primary immune
deficiency diseases (PIDD), and experts
believe they affect at least one in every
500 people.
Immune deficiencies are
characterized by unexplained patterns
of recurring illness. The diseases that
fall under this umbrella range from
the severe — like the “boy in the plastic
bubble” — to those that are merely
annoying, like a lifetime of chronic

08
1 in 500
people are affected by a
primary immune deficiency
disease.
Drs. Hans Ochs (left) and Troy Torgerson touch base with nurse practitioner Kathey Mohan at Seattle
Children’s Immunology Clinic. Ochs’ national leadership studying primary immune deficiencies at
the molecular level earned him the first endowed chair funded by the Jeffrey Modell Foundation, an
organization dedicated to finding the causes and cures for primary immune deficiency diseases.

low-grade sinus infections. Although
PIDD can strike at any age, the most
extreme of these diseases are typically
found in infants and toddlers.
A family legacy
Michael is the third generation in his
family to carry the defect in the gene
that causes hyper-IgE syndrome. His
grandmother, Roganna Barnes, has the
same genetic defect and remembers
her childhood as a dark time spent
in sickness and isolation. Repeated
pneumonias kept her out of school,
and she endured many surgeries at
Children’s to drain abscesses in her
ears so she wouldn’t go deaf.
In 1966, when Barnes was 9,
Children’s immunologist Dr. Ralph
Wedgwood and his colleagues
described her unusual mixture of
symptoms in the medical journal The
Lancet, and named her condition “Job’s
syndrome” for the boils that covered
her body like the biblical character Job.
Wedgwood recognized that children
with these puzzling symptoms were
different. He suspected that their
immune systems might not be able to
fight infections normally, so he treated
them aggressively with antibiotic
and antifungal medications to protect
them from infections. This allowed
Barnes and others like her to grow
into adulthood and have children of
their own.
Wedgwood’s leadership in studying
new treatments such as immunoglobu-
lin replacement therapy — which uses
blood plasma pooled from thousands
of people to replace antibodies that
are missing in many immune-deficient
patients — cemented his reputation
as one of the pioneers of pediatric
immunology and began the legacy
that has put Children’s at the forefront
of immune deficiency research.
Unraveling the mystery
By the late 1970s, Barnes’ symptoms
improved somewhat — though still
plagued by frequent problems, she
did not seem to get as many severe
skin or lung infections.
Unfortunately, her son David Vogel
wasn’t as lucky. As a teenager in the
mid-1990s, his health worsened. Vogel’s
lungs developed cysts where staph
bacteria thrived, and he was plagued
by frequent bouts of pneumonia.
Despite aggressive treatment, Vogel
fought frequent dips in his health that
left him unable to finish college or hold
down a job for long.
In 2007, Drs. Troy Torgerson,
Hans Ochs and members of their labs,
together with two other groups, found
the defect in the STAT3 gene that
causes hyper-IgE syndrome. Their
study — published in the New England
Journal of Medicine — came out four
decades after Wedgwood’s original
description of the disease. Since the
discovery, they’ve confirmed the STAT3
gene mutations in about 40 people
who they suspected had hyper-IgE
syndrome.
Identifying these gene mutations
provides patients with concrete

09
Research Changes Lives

“ Immunology research is a priority at

Seattle Children’s because immunity —
the body’s ability to fight infection
and disease — influences almost every
medical illness.”
—V
 icki Modell, co-founder of the Jeffrey Modell Foundation, an organization
dedicated to finding the causes and cures for primary immune deficiency diseases.
.
Summer 2009

diagnoses and opens the opportunity
for early, aggressive treatment. It also
holds great promise for advancing
current therapies.
“We can now take the mutations
found in the STAT3 gene, study them
Connection
still just a control measure — and
immunologists at Children’s are intent
on a cure.
Harnessing the future, today
children and adults with immune
system disorders. Watching people
contend with these diseases over time
— Barnes has known some of the
immunologists here for more than 40
years — inspires clinicians to develop

in cells and figure out how they cause the next generation of therapies.
Children’s is unique among pediatric
disease,” says Torgerson. “We can see Currently, Children’s researchers
immunology centers, and our other
how the mutation affects the immune are working on two solutions to put
clinics, because we diagnose and treat
system, and more precisely target an end to PIDD.
therapies to the specific clinical
features of the disorder.”
Sadly, Vogel never had the
opportunity to benefit from new
therapies that might emerge from
the discovery at Children’s. He
succumbed to hyper-IgE syndrome
at the age of 29.
The outlook for his son is different.
Seattle Children’s

Born just before Torgerson and Ochs

discovered the STAT3 gene defect in
his family, Michael developed
pneumonia at 3 months of age.
Thanks to the early genetic
diagnosis from a test developed in
Torgerson and Ochs' lab, Michael has
had the benefit of immunoglobulin
replacement therapy and prophylactic
antibiotics to reduce bacteria in his
body and prevent infections from
causing serious damage to his lungs.
Drs. Andy Scharenberg (left) and Dave Rawlings are working to cure single-gene diseases of the
But all this medical management is immune system by developing customized proteins that can find defective gene sequences in cells,
then cut out and repair them.

10
 Bone marrow transplant can be a
lifesaving option for patients affected
by the most severe immune deficiencies.
But current protocols were developed
for patients with cancer and include
high amounts of chemotherapy and
radiation. Torgerson and Dr. Suzanne
Skoda-Smith work in a unique
partnership with bone marrow transplant
specialists Drs. Lauri Burroughs and
Anne Woolfrey to customize transplant
protocols for PIDD sufferers to make
them less toxic and more likely to be
accepted by the patient’s body. The
team expects to publish the results
of some of their new protocols within
the next two years.
Drs. Andy Scharenberg and Dave
Rawlings are developing ways to
correct the gene defects that cause
PIDD. Their work — to develop
customized proteins that can find
defective gene sequences in cells, then
cut out and repair them — sounds like
the stuff of science fiction. But, based
on early successes, the team believes
human trials for gene repair are less
than a decade away.
Jennifer Goldberg (with her kids Clara and Tate) knew she had a role to play in finding a cure
To Come
for her son’s immune disorder, even if she wasn't a researcher. She now leads Children’s Gift
of Immunity Guild and is a member of the Guild Association Board of Trustees.
Becoming Part of the Solution
When Jennifer Goldberg says her son Tate is one in a million, she’s not
joking. Four hours after birth, he had a skin rash that wouldn’t go away.
Pneumonia and enlarged lymph nodes followed. After visiting her
pediatrician at least 15 times in one month, she and Tate were referred to
Seattle Children’s, where she met Dr. Hans Ochs, an internationally known
immunologist.
“It took only a day after meeting Dr. Ochs to find out that my son had
chronic granulomatous disease,” remembers Goldberg.
Only one in every 1 million children has this immune disorder. Most
experience a serious, life-threatening infection every four years. Tate, now 8,
hasn’t been hospitalized since he was an infant. Goldberg credits the
excellent care he’s received at Children’s for keeping him healthy, and she’s
passionate about supporting the researchers here who she hopes will find a
cure for her son.
After a talk by Dr. Andy Scharenberg about the promise of gene therapy
in 2004, Goldberg overheard him say that he was building a specialized
microscope because his lab didn’t have the money to buy one.
“I knew in that moment that I had a role to play,” she says.
Today, Goldberg is president of Children’s Gift of Immunity Guild, a
growing group of 200 supporters committed to funding the future of
pediatric immunology — one microscope at a time.
11
 A Guiding Hand
A Guiding Hand

Patient navigators help families with limited English overcome

language and cultural barriers by making sure they ask
questions and truly understand what is being said.

Isai Larios was born with hydrocephalus. Cerebrospinal fluid,

which normally drains through the circulatory system, was
building up and putting dangerous pressure on his brain.
Isai’s parents, Anabel Cisneros and Ignacio Larios, brought
their infant son to Seattle Children’s after being referred by
a doctor in their hometown of Yakima. Because they speak
limited English, a Spanish interpreter assisted them, but Isai’s
parents still did not fully understand their baby’s diagnosis.
Summer 2009

When they returned to Children’s for a second appoint-

ment, doctors wanted to place a shunt to drain the cerebro-
spinal fluid, and Isai was admitted right away. Isai’s parents
didn’t understand that the pressure from the fluid had
already caused some permanent injury to Isai’s brain. They
Connection

thought their 4-month-old son was improving and would

develop normally.
Confused but reluctant to ask questions, Isai’s parents
felt all alone. Then Blanca Fields stepped in. Fields is one
of three patient navigators at Children’s — a role that goes
beyond what the hospital’s regular interpreters provide.
Specially trained in medical interpretation, patient
navigators don’t just interpret conversations. They encourage
questions and make sure families truly understand what is
being said. They also make referrals, schedule appointments,
and arrange child care, transportation and financial
assistance. Over time, they prepare families to make their
own way through the healthcare system, both inside and
Seattle Children’s

outside the hospital.

(Top) “Having Blanca there was a real blessing,” says Anabel Cisneros
(top right) of the meeting that Fields (top left) arranged with her son
Isai’s care team.
(Bottom, from left) Anabel Cisneros and Ignacio Larios come to Seattle
Children’s from Yakima to have their son Isai treated for hydrocephalus.
“Communication issues should not prevent families who
speak limited English from receiving the highest quality of
care,” says Sarah Rafton, director of the hospital’s Center
for Diversity and Health Equity. “We want to make sure all
families are able to participate as full partners in their
child’s care.”
The three patient navigators aren’t just bilingual — they
are members of the ethnic communities they serve. Latino
navigators Fields and Martha Pinto and Somali navigator Ali
Adem are familiar with the unique values that influence how
immigrant families interact with the healthcare system.

12
Patient navigators, like Ali Adem (above left), help establish rapport between families and clinicians,
which helps ensure families understand complex medical information and how to care for their child
at home, says Sarah Pulliam (above right), a social worker involved in diabetes care.

with an interpreter, it’s difficult to explain complex situations

1 of 8
patient families who come to Seattle Children's
speak limited English.
“I wasn’t surprised that Isai’s parents were reluctant to ask
questions of their doctors,” Fields explains. “In Latino culture,
there is tremendous respect for doctors. We will never
question the doctor because the doctor knows everything.
We will just say ‘yes.’”
Fields arranged a meeting between the family and Isai’s
entire medical team, where she made sure his parents
received — and understood — answers to every question.
“Before that meeting, we were very confused, but it was
awkward for us to tell the doctor,” says Isai’s mom. “Having
Blanca there was a real blessing.”
Providers value navigators as much as families do. “Even
to families who speak little or no English,” says Sarah Pulliam,
a Children’s social worker involved in diabetes care. “There’s a
lot to learn before families can safely care for a diabetic child
at home. Navigators establish a level of rapport that helps us
ensure families understand the information we’re giving
them without the family getting defensive.”
Building trust between families and providers is critical —
especially when families come from countries where medical
care is poor, such as Somalia. “Somalis want to avoid a child
having a surgery or any kind of major procedure,” Adem
says. “Everyone knows a story of someone who had a
surgery and lost their life or lost a limb in a hospital back
in Somalia.”
The navigator program began with a grant from the
Washington State Department of Social and Health Services.
It will be carefully evaluated to determine if it should be
continued and perhaps expanded.
“We expect the evaluation to show that navigators give
families the knowledge and confidence to take a more active
role in decision-making involving their child,” says Dr. Doug
Jackson, chief of the Center for Diversity and Health Equity.
“It’s all about meeting our hospital goal of improving equity
in healthcare.”

13
 What’s Happening
What’s Happening
at Seattle Children’s
Summer 2009
Thomas N. Hansen, MD
CEO, Seattle Children’s
Cilla Joondeph
Chairman, Seattle Children’s
Hospital Board of Trustees
Connection
AAP Publishes Book by Seattle Children’s Nurse
Seattle Children’s neonatal outreach
coordinator Jeanette Zaichkin, RN, is
the first nurse in the nation to have a
book published by the American
Seattle Children’s
Academy of Pediatrics (AAP). The third
edition of Zaichkin’s book, Newborn
Intensive Care: What Every Parent
Needs to Know, will be published by
the organization in fall 2009.
The book’s 17 chapters, written by
clinicians from across the United States
and Canada and edited by Zaichkin,
14
Meeting the Challenges of the State Budget
This spring brought the hard reality of
our national economic crisis home to us
at Seattle Children’s in a powerful way.
After deliberating on how to address
a $9 billion shortfall, Washington state
legislators approved a budget that
includes substantial cuts in funding
to Medicaid and other programs that
support healthcare for our state’s most
vulnerable children and families.
As a result, we expect to see about
$22 million in cuts over the next two
years.
As Connection magazine goes to
print, we are still analyzing the details
of the Washington state budget and
its impact on Children’s — but we
believe we can preserve our existing
clinical programs.
To accomplish this we are stepping
feature a comprehensive review of
newborn medical conditions and the
challenges facing parents of babies in
intensive care. The easy-to-understand
guide is used by parents, nursing and
medical students, home-health nurses
and social workers. Chapters range
from “NICU Players: Working With the
Team” to “Home at Last.”
In the upcoming edition, Zaichkin
and five other clinicians from Seattle
Children’s contribute chapters.
up our efforts to eliminate waste,
reduce expenses and conserve
resources through our Continuous
Performance Improvement program.
Ideas offered by our employees and
physicians have already helped us
save millions of dollars.
Our founding promise — to
serve all children in our region
regardless of a family’s ability to
pay — remains as strong as ever.
The events of this spring reminded
us again that the support of our
community is essential to achieving
this audacious goal.
Thank you for all you do on our
behalf. Now more than ever, we rely
on your generosity to fulfill our
promise to the children and families
we serve.
Jeanette Zaichkin is the first nurse in the nation
to have a book published by the American
Academy of Pediatrics.
Teens Display Risky Behavior on MySpace
Two groundbreaking studies from
Seattle Children’s validate parental
concerns about teens’ online
communication and suggest that
e-mail interventions from a physician
may decrease risky behavior.
The first study found that out of 500
teens, about half frequently discussed
high-risk behaviors like alcohol or drug
use, sex and violence on the social
networking Web site MySpace.
Seattle Children’s researcher
Dr. Dimitri Christakis, one of the lead
authors of the studies, also found
Teens and tweens often don’t realize the consequences of sharing personal information online.
Bringing Health and Safety
Information Closer to Home
Seattle Children’s new health and
safety van, supported by an $80,696
grant from Kohl’s Cares for Kids
program, brings information to families
in local communities about everything
from home childproofing to healthy
eating, and distributes low-cost safety
gear, such as bike helmets and life jackets.
that young people who said they
were active in sports, religious groups
or other interests were less likely to
discuss risky behaviors on MySpace.
In the second study, the researchers
read MySpace profiles of approximately
200 teens who discussed high-risk
behaviors and then sent a physician
e-mail to half of the group, which
included a warning about the risks of
sharing personal information online.
After the e-mail intervention, more
than 40% of the teens either removed
references to sex behaviors or
substance use or changed their profile
from public to private. Among teens
who did not receive an intervention
message, only about 5% removed such
information.
The studies were published in the
January 2009 issue of the Archives
of Pediatric and Adolescent Medicine.
You can hear Christakis discuss
findings from both studies at
www.seattlechildrens.org/home/assets/
press_release/christakis_myspace.mp3.
“ The 21st century
digital divide
separates too
many clueless
parents from
their Internet-
savvy children.”
— Dr. Dimitri Christakis
15
What’s Happening

Investing in the Future

With an eye on current and future need, Seattle Children’s moves forward with growth plans
to keep pace with increasing demand.

Seattle Children’s is moving forward with long-standing
plans to expand the main hospital campus in Seattle
and develop an outpatient clinic and surgery center in
Bellevue.
“Our facilities are at capacity much of the time and
the demand for our services continues to increase. We
need to grow to keep our promise to the children of
our region,” says Dr. Tom Hansen, Children’s CEO.
“We never want to reach a time when kids are being
redirected to California or Denver to get the treatment
they need because we don’t have room.”
Children’s is nearing the end of the Major Institution
Master Plan (MIMP) process. The city of Seattle requires
this process of every large institution that wants to
grow to explain the need for its growth and assess its
impact on the surrounding neighborhoods and the city.
Summer 2009
Children’s formally began the process in 2007. We are
hopeful that construction of the needed hospital beds
will begin in 2010.
Bellevue outpatient facility
In July, we officially dedicate the site of the new Seattle
Children’s Clinic and Surgery Center in Bellevue. The
new center, expected to open in 2010, will provide
access to our high-quality care closer to home for many
families who live on the east side of Lake Washington.
Services planned for the 75,000-square-foot
building include a day surgery center, urgent care,
imaging, pharmacy, lab, sports therapy gym and more
than 15 clinics from audiology to vascular anomalies to
our Sleep Disorders Center.

Creating a Road Map to Prevent Prematurity and Stillbirth

Scientists, policy makers and newborn “These are truly global problems,
health experts from 35 countries affecting more than 16 million families
Connection

gathered in Seattle May 7 to 10 to in developed and developing countries.

Every year, 12.5 million babies are born preterm,
and more than 4 million are stillborn or die
because they were born too early.
Seattle Children’s
develop a global action plan to address
prematurity and stillbirth. Worldwide,
more than 3 million stillbirths occur
each year, and premature birth is a
leading cause of newborn death.
Seattle Children’s Global Alliance
to Prevent Prematurity and Stillbirth
(GAPPS) hosted the invitation-only
conference in cooperation with the
Bill & Melinda Gates Foundation, March
of Dimes, PATH, Save the Children,
UNICEF and the World Health
Goals created at this conference will
foster long-term collaborations to
improve maternal, newborn and child
health globally,” said Dr. Craig Rubens,
a physician-researcher who serves as
GAPPS executive director.
For more information, including a
webcast of the event, see www.gapps.org.

Organization.
At the conference, GAPPS’ team of
international investigators presented
their research findings. A dozen work
$26 billion
groups then identified and prioritized is spent on healthcare costs
recommendations for advancing related to prematurity in the
research and improving pregnancy
United States each year.
outcomes.

16
Philanthropists
Gather in Seattle
Seattle Children’s Hosts North American Leadership Conference
Honorary chair Tom Brokaw with Seattle Children’s Circle of Care founding co-sponsors (from left)
Jim Sinegal, CEO, Costco; Jan Sinegal; and Scott Oki, the Oki Foundation, at the North American
Leadership Conference last month in Seattle.
Leading benefactors from 24 pediatric
hospitals gathered in Seattle May 7
for the Children’s Circle of Care (CCC)
North American Leadership Conference
and Gala Dinner. More than 650 guests
attended, including nearly 375 from
Seattle Children’s.
CCC is an annual giving program
for individuals, couples and family
foundations who give $10,000 or more
per year to a participating hospital.
Collectively, members have donated
more than $2.6 billion since CCC was
founded in 1995.
“CCC members have become a
major force in advancing pediatric
healthcare,” says Dr. Tom Hansen,
Children’s CEO.
The annual conference recognizes
members for their generosity,
highlights how philanthropy supports
research and patient care, and educates
attendees about developments in
pediatric medicine. This year’s featured
speakers were Dr. Richard Hopper of
Seattle Children’s, who is working to
improve craniofacial surgery around
the world; Dr. Robert Baldassano of
The Children’s Hospital of Philadelphia,
who has advanced treatments for
inflammatory bowel disease; and
Dr. Bruce Carleton of B.C. Children’s
Hospital, who researches the impact
drug therapy has on human health
and quality of life.
“The advances taking place in
pediatric medicine are amazing,” says
Seattle CCC member Shalisan Foster.
“It’s gratifying to support this work.”
Tom Brokaw, honorary chair, spoke
about leadership and philanthropy
at the luncheon, and Grammy
Hundreds of supporters from 24 pediatric
hospitals attended the Children's Circle of Care
North American Leadership Conference and
Gala Dinner in Seattle in May.
Award–winning singer-songwriter
Natalie Cole performed at the gala,
held at the WaMu Theater. The night
before, Seattle CCC members gathered
at Benaroya Hall for a wine reception,
sponsored by Sellen Construction,
Costco Wholesale and the Oki
Foundation.
Local leadership was vital to
conference success. A large group of
volunteers worked with staff at Seattle
Children’s Hospital Foundation to
create a unique and inspiring
conference experience. Jan and Jim
Sinegal and Shalisan and Greg Foster
led the host city committee. John
Meisenbach directed efforts to acquire
sponsorships, Scott Redman led a drive
for new members and Michele Smith
oversaw conference hospitality and
served as emcee for all major events.
17
 On the Scene
On the Scene
Summer 2009
Connection

Bender (left) and Jackie welcomed Sara and James Hsu and twins Isaac and Toby to One Big
KISS for Seattle Children’s Radiothon to talk about Toby’s successful treatment at Children’s for
a heart condition.

Radiothon Raises $902,000

The eighth annual One Big KISS for
Seattle Children’s Hospital Radiothon
raised more than $902,000 during its
broadcast from the hospital on 106.1
KISS FM on Feb. 25 and 26. Proceeds
benefited Children’s Greatest Needs
Fund, the Jackie & Bender Endowment
Seattle Children’s
featured inspiring stories of patients, really came through,” says Bender,
caregivers and volunteers, including KISS Morning Show co-host. The
that of 8-year-old Erik Johnson, who John L. Scott Foundation was the
raised $21,119 for research in memory Radiothon presenting sponsor.
of his best friend who died of a brain
tumor. Listeners responded by
contributing nearly $29,000 more

for Uncompensated Care and pediatric toward Erik’s efforts. “Even with a
brain tumor research. The program challenging economy, our listeners

Community support helps Seattle Children’s provide sick or injured

children in our region with an equal opportunity to receive world-class
pediatric care.

18
(Above) Hundreds of Seattle Children’s guild members attended their annual meeting at the Westin Seattle in April. (right top) Michele Smith, chair of
Seattle Children’s Hospital Guild Association Board of Trustees, thanked annual meeting attendees for supporting the hospital. (right bottom, from left)
Pam Baughn, Cary Young and Sharon McCagg were honored as emeritus trustees for serving at least nine years each on the Guild Association board.

Annual Meeting Highlights Guild Contributions

More than 500 supporters attended
the annual meeting of Seattle
Children’s Hospital Guild Association,
emceed by John Curley at the Westin
Seattle on April 30. Michele Smith,
chair of the association’s board of
trustees, highlighted recent guild
accomplishments, including the
$11.4 million raised through projects
and membership in fiscal year 2008.
Dr. Tom Hansen, Children’s CEO,
thanked attendees for supporting
uncompensated care, highlighted
achievements from the past year
and discussed the financial challenges
facing the hospital. He explained
why, despite the recession, Children’s
must expand to meet the region’s
growing need.
Dr. Doug Hawkins, associate division
chief of the hospital’s Hematology/
Oncology Department, spoke about
Children’s nationally recognized cancer
care. At the luncheon’s conclusion,
attendees donated $20,500 to support
uncompensated care.

19
On the Scene
Laura Brigman Guild members (from left)
Meghan Long, Deb Long, Inger Hamburg,
Diana Clements and Kristine Houde enjoyed
the gorgeous weather and brisk sales at
Seattle Children’s 85th annual Garden Sale.
Garden Sale Turns 85
The 85th annual Garden Sale raised
nearly $24,000 outside Seattle Children’s
administrative offices April 18 and 19.
The Laura Brigman Guild presented the
Summer 2009
event, which is the hospital’s longest-
running fundraiser. The sale featured
many varieties of perennials, annuals,
shrubs, trees, ornamental grasses and
ground covers. Children’s gardeners
Connection
advised shoppers on plant selection
and care. Raffle prizes included a
private two-hour consultation with
Jeff Hughes, a horticulturist and
manager with Children’s Grounds
Maintenance Department.
Seattle Children’s
American Girl Fashion Shows have helped the
Star Guild raise $268,000 for uncompensated
care since the guild formed in 2006.
20
Emcee John Curley joined Preston Kuppe Guild
members Lisa Weller (left) and Jolene Logue at
the Art à la Carte luncheon in May.
Guild Artfully Raises $77,000
The third annual Art à la Carte luncheon
raised $77,000 at The Golf Club at
Newcastle May 1. Attended by 200
guests and presented by the Preston
Kuppe Guild, the event featured silent
and live auctions of work donated by
Northwest artists, including paintings,
jewelry, textiles, glass and photography.
The live auction, conducted by John
Curley, included travel packages, dinner
outings and a Raise the Paddle to
benefit uncompensated care. Marji Mar
and her 9-year-old son Marques spoke
about the cardiac care Marques
received at Seattle Children’s.
Philanthropy in Style at Fashion Shows
The Star Guild presented five American
Girl Fashion Shows, which raised
$90,000 for uncompensated care at
Meydenbauer Center in Bellevue March
13 to 15. More than 2,000 guests
watched approximately 100 girls and
their dolls model historical and
contemporary fashions. Leading up
to the shows, the models collectively
raised more than $12,000 for Seattle
Children’s through activities such as
Kylee Smith, 3, chats with S'mores the Pony, a
live-auction item at the Log A Load for Kids
dinner in March.
Loggers Benefit Kids
The Washington State Contract
Loggers Association raised nearly
$27,000 at the 12th Annual Log A
Load for Kids dinner, held at the
Marcus Whitman Hotel in Walla Walla
on March 13. Proceeds benefited
Seattle Children’s and Children’s
Miracle Network in Spokane. The
Western-themed event included a
dessert auction, raffles, and live and
silent auctions. Children’s thanks the
Washington logging industry for its
generous support.
bake sales, babysitting and coin drives.
During each show’s intermission, Star
Guild President Dana Lofton welcomed
the Walters family, who shared a video
about how uncompensated care helped
them. “We thank our generous donors
for supporting uncompensated care
during a time of rapidly rising need,”
says event chair Kristen DeFranco.
Seattle Children’s patient Charlie Hawkinson
and his parents Brad and Kris attended the
RE/MAX Select dinner and auction in April.
RE/MAX Raises $52,000
RE/MAX Select Real Estate in Maple
Valley raised more than $52,000
through the third annual “Little
Miracles” dinner and auction April 24
at the Olson Mansion. Held to benefit
uncompensated care and pediatric
brain tumor research, the event
included a live auction conducted by
John Curley and a silent auction. Brad
Hawkinson spoke about his children,
Jennifer and Charlie, who were treated
for cancer at Seattle Children’s. The
hospital thanks participating RE/MAX
agents, vendors and clients for their
ongoing support.
Kelsey Abrejera (right), a sixth grader at
St. Philomena Catholic School in Des Moines,
presents Seattle Children’s representative
Kristin Johnson with gifts for patients and more
than $600 in donations, which Kelsey collected
at her birthday party.
Amanda Jones, PhD, of Seattle Children’s
Science Education Outreach Program, helped
youngsters conduct experiments on strawberry
DNA at the Edmonds PCC in May.
Healthy Support from PCC
PCC Natural Markets is donating 5% of
Kid Picks product sales, up to $10,000,
to Seattle Children’s through June 15.
The Kid Picks product line highlights
healthy foods that children enjoy. To
be included, items must be approved
by two-thirds of the youngsters who
judge them in area taste tests.
The Edmonds, Redmond and
Issaquah PCC stores kicked off the
promotion with pancake breakfasts,
scavenger hunts and product giveaways
on May 2. Amanda Jones, PhD, and
Mark Ruffo, PhD, from Children’s
Science Education Outreach Program
visited the Edmonds store and involved
kids in hands-on science experiments.
Birthday Party Benefits Seattle Children’s
As Kelsey Abrejera approached her
12th birthday, she asked family and
friends to donate to Seattle Children’s
in lieu of buying her gifts. “I realized I
didn’t need anything, and I wanted to
honor my friend who was a patient
there,” says Kelsey.
“I am extremely proud of Kelsey,”
says Michael Abrejera, her father. “She
came up with the idea all on her own.”
The late Helen Clark left Seattle Children’s more
than $117,000 in savings bonds to support
uncompensated care.
A Legacy of Healing
Seattle Children’s received a gift of
more than $117,000 in United States
Savings Bonds from the estate of
Helen Clark, who passed away in
2008. A longtime Poulsbo resident
and former member of the Ingeborg
Nevill Guild, Clark believed passionately
in Children’s commitment to providing
the best possible care, regardless of
a family’s financial circumstances.
In fiscal year 2008, estate gifts
like Clark’s provided $16.9 million
for uncompensated care, pediatric
research and patient care programs,
among other important initiatives. To
learn how to include Children’s in your
estate plan, call 206-987-4977.
Kelsey’s generosity is inspiring others.
“Now my friends are getting ideas for
how to do something like this,” she
says. If you would like to celebrate a
special occasion and help patients
receive world-class pediatric care at the
same time, contact Commemorative
Giving at 206-987-4844.
21
 Calendar of Events
Calendar of Events
Miracle Balloon Sales
Children’s Ride Weekend
21st Annual Pacific
Northwest Historics
Vintage Auto Races
Miracle Treat Day
Auction of Washington
Wines Weekend
Summer 2009
Connection
Lenny Wilkens Celebrity
Golf Classic Weekend
Seattle Children’s
10th Annual Children’s Golf
Classic Dinner Party
Seventh Annual Kirkland
Concours d’Elegance
22
June 3 to 16; participating
Haggen Food & Pharmacy and
TOP Food & Drug locations
Gala and Auction
Friday, June 26, 6 p.m.;
Fremont Studios, Seattle
Children’s Ride 14
Sunday, June 28, 7 a.m.;
registration at Safeco Field
parking garage, Seattle
Friday, July 3, to Sunday,
July 5, gates open at 8:30 a.m.;
Pacific Raceways, Kent
Thursday, Aug. 13; participating Proceeds from the sale of Blizzards will benefit Seattle Children’s.
Dairy Queen locations
Barrel Auction & Picnic
with the Winemakers
Thursday, Aug. 13, 4:30 p.m.;
Chateau Ste. Michelle,
Woodinville
Winemaker Dinners
Friday, Aug. 14; selected
wineries and private
residences in Greater Seattle
Covey Run 10K and 5K
Run/Walk & Kids Dash
Saturday, Aug. 15, 8 a.m.;
start and finish at Redhook
Ale Brewery, Woodinville
22nd Annual Gala Auction
Saturday, Aug. 15, 4:30 p.m.;
Chateau Ste. Michelle,
Woodinville
Dinner and Auction
Friday, Aug. 14, 5 p.m.;
Bellevue Hyatt Regency
Golf Tournament
Saturday, Aug. 15, 10 a.m.;
Echo Falls Country Club,
Snohomish
Sunday, Aug. 23, 4 p.m.;
Safeco Field, Seattle
Sunday, Sept. 13, 9 a.m.
to 4 p.m.; Carillon Point,
Kirkland
Your purchase of a Miracle Balloon supports Seattle Children’s.
Call 206-987-4903.
Enjoy dinner, entertainment and live and silent auctions. Bid on two
customized Harley-Davidson motorcycles. $150 per person. Visit
www.childrens-ride.com or call 206-987-4876. Presented by the
Imagine Guild.
Join a Washington State Patrol–escorted ride from Safeco Field to
Emerald Downs in Auburn. $60 per person includes ride, racetrack
admission and barbecue. Visit www.childrens-ride.com or call
206-987-4876. Presented by the Imagine Guild.
Enjoy races featuring rare pre-1970 automobiles. Adults: $25 per day or
$40 for three days. Children: $5 per day. Visit www.northwesthistorics.com
or call 206-987-2777. Presented by the SOVREN Guild.
Visit www.miracletreatday.com.
Enjoy wine tasting, a gourmet picnic, games, barrel and
silent auctions, and entertainment for $125 per person.
Visit www.auctionofwashingtonwines.org or call 206-326-5747.
Attend dinner with renowned Washington winemakers and chefs for
$250 per person. Visit www.auctionofwashingtonwines.org or call
206-326-5747.
Pre-register for $30; $35 on race day. Children under 10 participate
in Kids Dash for free. Bring pledges and donations. Register at
www.runforchildrens.org or call 206-987-4816. Presented by the
Run for Children’s Guild.
Black-tie gala will feature live and silent auctions with collectible
Washington wines, wine vacations and a multicourse dinner created
by prominent Northwest chefs, served with Washington wine. $500
per person. Weekend and corporate packages available. Visit
www.auctionofwashingtonwines.org or call 206-326-5747.
$175 per person or $1,600 for a table of 10.
Visit www.lennywilkensfoundation.org or call 425-898-4592.
Golf packages start at $275 per person.
Visit www.lennywilkensfoundation.org or call 425-898-4592.
Join the Friends of Costco Guild for one of Seattle Children’s
premier fundraising events. Seating is limited. $250 per person.
Call 206-281-7130.
Enjoy an impressive display of classic automobiles, motorcycles and
vintage wooden boats. Adults, $25; children 7-17, $10; kids under 7, free.
Visit www.kirklandconcours.com or call 425-822-7066. Supported by
the SOVREN Guild.
At a Glance

Boards of Trustees 2008–2009

Hospital Foundation Guild Association Executive Staff

Cilla Joondeph Laurie Oki Michele Smith Thomas Hansen, MD

Chairman Chairman Chairman CEO

Sue Albrecht Cindy Masin Sherry Benaroya Fariba Ronnasi Pamela Baughn Trish Oury Patrick Hagan Susan Heath, RN, MN
Dean Allen Linda Mattox Robert Cline Robert Sawin, MD Laurie Boehme Nancy Schenck President and Chief Senior Vice President
Operating Officer, Chief Nursing Officer
Rhoda Altom Resa Moore A.M. Clise Kenneth Schubert Jr. Sue Byers Laurie Taylor
Seattle Children’s
Libby Armintrout Gloria Northcroft Ronald Crockett J. Lennox Scott Kerri Coyle Dixie Wilson Hospital Sanford Melzer, MD
Robb Bakemeier Laurie Oki Richard DiCerchio Peter Shimer Jana Dukelow Cary Young Senior Vice President
James Hendricks, PhD Strategic Planning
Joel Benoliel Kathy Randall David Fisher, MD Michele Smith Krista Fay Jennifer Zinda
President, Seattle
Jane Blair Rob Roskin, MD Shalisan Foster Dale Sperling Mary Jo Foseid Children’s Research Robert Sawin, MD
Julia Calhoun Jan Sinegal Thomas Hansen, MD F. Bruder Stapleton, MD Shalisan Foster Institute Surgeon-in-Chief
President, CUMG
Pat Char Peggy Walton Ray Heacox Kelly Wallace Jennifer Goldberg
Douglas Picha
Nancy Daly Kandace Holley Robert Watt Dorothy Greenwood President, Seattle Jeffrey Sconyers
Michael Delman Ted Johnson Dina Wells Mary Lynn Holman Children’s Hospital Senior Vice President
Foundation General Counsel
David Fisher, MD Cilla Joondeph Lenny Wilkens Jane Humphries
Bob Flowers Craig Kinzer Mari Juntunen Lisa Brandenburg F. Bruder Stapleton, MD
Mary Ann Flynn Howard Lincoln Linda Maki Senior Vice President Senior Vice President
Chief Administrative Chief Academic Officer
Thomas Hansen, MD Candy Marshall Louisa Malatos
Officer
Kay Heron John Meisenbach Barbara Mann Kelly Wallace
Genie Higgins Cameron Myhrvold Lorene Martin Drexel DeFord Senior Vice President
Senior Vice President Chief Financial Officer
Jim Ladd Gordon Perkin, MD Lisa Mawer
Chief Information
Mona Locke Douglas Picha Sharon McCagg Officer
Scott Redman Suzanne Sinegal
McGill Mark Del Beccaro, MD
Tami Reller
Pediatrician-in-Chief
Chief Medical
Information Officer

David Fisher, MD
Senior Vice President
Medical Director

23
 NON-PROFIT ORG.
U.S. POSTAGE
PAID
M/S S-200 Seattle, WA
PO Box 50020 Permit No. 8225
Seattle, WA 98145-5020
www.seattlechildrens.org

Address Service Requested

No doctor alone can stop SIDS, childhood epilepsy or

brain tumors. That’s why we brought his team to Seattle.
Dr. Nino Ramirez, Director of the Center for Integrative Brain
Research at Seattle Children’s Research Institute, is dedicated
to finding cures for some of the most serious childhood
diseases. A world-renowned researcher and Professor of
Neurological Surgery at the University of Washington,

Cure.
Dr. Ramirez leads a team of top brain researchers
at Seattle Children’s.
At Seattle Children’s, finding cures for tomorrow
is as important as treating children today. And we couldn’t
do it without your support. Because when you help us,
it helps all children. To learn more or donate, visit
seattlechildrens.org.