Handprints - Spring 2005 - Children`s Hospital Oakland

inside:
spring 2005
Back in the Game •
PAGE 8
WHEN SADIE’S HEART FIRST
STOPPED, SO DID HER ACTIVE LIFE.
Educating Hearts
and Minds •
A Place
for Kids •
PAGE 14
PAGE 18
MEET TWO FORMER RESIDENTS
NOW PRACTICING IN OAKLANDBASED COMMUNITY CLINICS.
WE KNOW THAT KIDS ARE
NOT JUST LITTLE PEOPLE.
2
CHILDREN’S HANDPRINTS
table of contents
8
3
DEAR READER
Letter from the president
4
IN THEIR OWN WORDS
Transformation: After a journey from despair to diagnosis, a daughter
blossoms Mental illness affects not only the patient but everyone around her.
A family shares their daughter’s battle with bipolar disorder. Ruth Besser and her
daughter each tell the story in their own words.
8
14
PHOTO STORY
Back in the Game When Sadie’s heart first stopped, so did her active and
independent life.
10
WELCOME
Meet Frank Children’s new president and CEO speaks about his first
impressions, plans, aspirations and beliefs.
12
RESEARCH RUNDOWN
Dietary supplement may help children with genetic blood disorder
Ash Lal, MD, studies how a dietary supplement may counter the effect of iron
overload in children who receive frequent blood transfusions—the only existing
treatment for thalassemia.
Center for Immunobiology and Vaccine Development Opens New facilities
and the latest equipment give a boost to research that seeks to understand the
functioning of the immune system and discover vaccines against serious infectious
diseases.
18
14
ADVOCATES FOR KIDS
Educating Hearts and Minds to Change the World Cuts in Children’s
Hospital Graduate Medical Education funding threaten the nation’s pipeline
of young, committed pediatricians.
Stand Up and Be Heard Send a postcard for a real-life child with real-life
problems to your elected officials, and let them know you care about healthcare
for children.
17
NUTRITION
Surgeon General Tours Children’s Hospital Dr. Richard Carmona talks about
childhood obesity during his visit.
22
You Are What You Eat New dietary guidelines aim to steer kids clear of obesity
and related illnesses.
18
A PLACE FOR KIDS
Pre-Op with Tom: Meeting the Dragon Medical play helps kids cope with fear
and makes procedures go smoothly.
Videos For What Ails You Filmmaking helps children work through problems.
22
CHILDREN’S HOSPITAL & RESEARCH CENTER FOUNDATION
Not Too Cool for School Children with extended hospital stays keep current on
school work and technology.
Gentle Hands Teach Parents in the ICN Specialists guide parents in learning
how to touch and hold their medically fragile babies.
Children’s Thanks the Community for New Research Center
ON THE COVER: Five-year-old Jaime enjoys a cart ride provided by Child Life staff. For more about how Child Life staff help make
life in the hospital easier for kids, see “A Place For Kids,” starting on page 18.
SPRING 2005
3
HandPrints
A C H I L D R E N ' S H O S P I TA L & R E S E A R C H C E N T E R AT O A K L A N D P U B L I C AT I O N
Children’s HandPrints is a publication
of Children’s Hospital & Research
Center at Oakland, 747 52nd Street,
Oakland, CA 94609; 510-428-3000.
Written, designed and produced by:
Marketing Communications Dept.
at Children’s Hospital & Research
Center at Oakland
665 53rd Street
Oakland, CA 94609
Phone: 510-428-3367
Fax: 510-601-3907
Dear Reader:
As the new president and CEO of Children’s Hospital & Research Center
at Oakland, I’m excited to be back in the Bay Area, working with the
bright, committed and impassioned staff of Children’s Hospital.
Frank Tiedemann
President and Chief Executive Officer
Mary L. Dean
Senior Vice President, External Relations
Vanya Rainova
Director, Marketing Communications
Editor
Tina Amey
Receptionist
This is a warm and friendly place where I’ve felt welcomed by everyone
I’ve met.
Debbie Dare
Graphic Designer
Susan Foxall
Spring is a time of new beginnings; and joining Children’s and its
community is a very important new beginning for me. I hope to learn
from all of you—staff, physicians, parents and children, as well as
Operations Manager
Nina Greenwood
Marketing Manager
Tom Levy
supporters and advocates. Working together, I know we can do great
Senior Writer
things for children’s healthcare.
Venita Robinson
I’ll share more of my thoughts with you inside the magazine, starting
on page 10. Thanks for being a part of our future.
Director, Media and Community Relations
Neile Shea
Senior Web Designer
Gary Turchin
Writer
Sincerely,
Diana Yee
Media Relations Specialist
Contributing Writers:
Ruth Besser
Saskia Van Buren
Frank Tiedemann
President and Chief Executive Officer
Children’s Hospital & Research Center at Oakland
Contributing Photographer:
Marianne Thomas
Story requests, comments or
suggestions for Children’s HandPrints
may be e-mailed directly to Vanya
Rainova ([email protected]), or
sent to 665 - 53rd Street, Oakland,
CA 94609.
4
CHILDREN’S HANDPRINTS
am the mother of a soon-to-be 12-year-old daughter,
another few minutes. We got through life one minute at a time.
Saskia, who suffers from bipolar illness.
Outside the home, Saskia’s behavior was not aberrant; she
My husband and I had Saskia late in life; I was 46
was shy, didn’t bond with other children, but also didn’t act out.
and he was 50. The pregnancy was smooth and Saskia
Since the traumatic behavior occurred at home, I really had no
was born “perfect,” without a single discernible problem.
one to talk to about it.
We were both thrilled.
Saskia was highly gifted at sports and always played her
I soon sensed she was high-strung, very prone to long bouts
heart out—often she was the “team star” in soccer and baseball.
of crying, and so demanding that we started raising her in
She made it all the way into the boy’s AAA league. What was
shifts. It was our survival mechanism, and it goes without saying
missing was any sense of connectedness to her teammates—her
that it had severe repercussions on our marriage. We stopped
affect was sullen, even when she had scored or hit a home run,
doing things as a family and paired off with her, one parent at a
and everyone, including the coach, was making a big deal over
time.
her. Nothing seemed to change her glumness.
At first I attributed our exhaustion to our age and
At home she was often miserable, self-destructive and
lower energy levels. But at a routine baby check-up, the
rebellious—she ran our family, and we, as parents, could
pediatrician, noticing Saskia’s extreme agitation,
not get a grip on it or reach a consensus about how to
IN THEIR
referred us to a psychologist for help dealing with
handle her behavior. I felt appalled by much of it, and
“spirited” children.
helpless to change it. My husband reacted by giving in
WORDS
When Saskia was about 2 years old, her behavior
and appeasing her every want and whim, anything and
B Y R U T H everything to keep the peace. Our family life continued
became more extreme. For example, she would bang
B E S S E R
her head on the sidewalk when her dad would come
deteriorating.
home. When she was well on her way in speech development,
hen our daughter was 9, her teacher called us in to discuss
she expressed her feelings by saying “I hate myself ” or “I wish I
the inappropriate music and lyrics Saskia was bringing to
was never born,” and she continued to hurt herself, scratching,
school and to talk about her low self-esteem and unhappiness.
biting, pinching, pulling her own hair or banging her head
This opened a can of worms that couldn’t be closed. Saskia
against things.
withdrew from the school and other activities she was participating in. Our family suffered a complete meltdown. Everyone
blamed everyone else and we blamed the teacher most of all.
The elephant in our living room could no longer be ignored.
The pace of Saskia’s deterioration became fast and furious;
And dad didn’t
she was manifesting behaviors that bordered on, or were well
into, what I assessed to be psychotic. She was hearing things
want to hear about anything being
that were not there, and feeling body sensations out of space
wrong with his daughter.
and time. She howled like a wounded animal for hours on
We lived our lives on eggshells trying to placate Saskia, so
end—full of panic, fury, fear and bottomless pain.
the eruptions would be minimized. When things were peaceful
She went beyond harming herself; her violence was now
we limped along hoping the calm would last another hour, or
aimed at objects, the cats, and us, her parents, as well. Her
I
Own
W
I had no words to
explain any of the
phenomena I was
experiencing.
w w w. c h i l d re n s h o s p i t a l o a k l a n d . o rg
SPRING 2005
misery was heart-wrenching, and she could not be left alone; we
were afraid for her every minute. We were so scared that we
called 911. We were told to bring her to the hospital, a place
she has deep-seated phobias about.
We placed Saskia into therapy through our HMO, and it
was a long battle getting anyone to take her seriously. I finally
played a recording of her shrieking in the pediatric psych waiting room, for which I was reprimanded, but it got the attention
of the staff. We soon found ourselves with four professionals to
work with, and one gave Saskia extensive testing. This professional suggested we might want to explore a pediatric bipolar
condition and told us the foremost authority to contact was a
Dr. Herbert Schreier at Children’s Hospital & Research Center
at Oakland.
It was an epiphany to be back on
charted land,
that this thing finally had a name, and
that there was treatment available.
with hope
I expected it to be months before we could get an appointment with Dr. Schreier, but within days of receiving my letter
he called me at work and told me to bring Saskia in “as soon as
possible.” From that moment on I felt an enormous weight
being lifted from my shoulders. We had found someone to
share with, someone who was willing to help, who also had the
tools and experience to help.
W
e went to see Dr. Schreier. He confirmed the diagnosis and
spelled out further steps to take, including more testing
5
and starting our daughter on medication. She went through
numerous trials of medications before we found the ones that
worked for her. Dr. Schreier was always there for us; if we
emailed him at 12:01p.m., we received an email back at 12:05
p.m. He was willing to see us as often as it took, until we began
to see genuine improvement.
While things are still hard, we are no longer in an unmanageable, unlivable situation like the one we dealt with for close
to 10 years. Once her inner pain was allayed, Saskia could see
herself as someone good. She wanted to be a “nice person.” We
finally saw some caring and loving sides of her nature take root
and begin to grow.
Before taking medication, Saskia tested “low” on all of the
eight or so tests she took over a period of months, which led to
her being held back a year in school.
This year she was placed in GATE, a program for gifted and
talented children. She went from having no motivation at
school to being so concerned about completing her assignments
that she wakes up in the middle of the night to complete her
homework. She was the only child in her class to memorize all
of Lewis Carroll’s poem “JABBERWOCKY,” which is composed of nonsense words. She got extra credit for that. Best of
all, she has hope for herself and wants to do well, to be a good
person, where before she had no hope, and no way to understand the inner pain she suffered.
And that’s where our daughter’s essay, “Transformations,”
comes in. This essay was written on a very good day, coming
from a very good place; and one can see the genuine self-esteem
and insight emanating from her. (see essay on page 7).
6
CHILDREN’S HANDPRINTS
Of course, not every day is like that.
We still have our storms, and the
intensity that is a part of her can be both
exhilarating and utterly exasperating.
Still, my husband and I feel undying
gratitude to Dr. Schreier and the
Children’s Hospital staff for putting our
daughter back together again. It took
not only expertise, but real passion and
commitment to helping these kids and
their families, a willingness to be there
whenever we needed help and to keep
trying one combination of interventions
after another. If this article and our
daughter’s own words give hope and help
Manic-depression in children
By Herbert Schreier, MD
In the last decade mental health workers have recognized that children as young
as 3 can suffer serious depressions. It has
also become clear that a bipolar-like condition, much like manic-depression in adults,
is more common in children than once
believed.
I first met a manic-depressive child, an
11-year-old, within months of joining
Children’s Hospital, more than 25 years
ago.
In bipolar children, severely maladaptive mood regulation may lead to
hyper-irritability, major meltdowns lasting
longer than an hour, sexualized behavior
beyond what is typical for such young kids,
and aggression toward the self and others.
For example, two mothers of 5-year-olds in
my practice both arrived at their first session covered with bruises inflicted by their
children.
Meltdowns may occur daily, or come in
cycles, associated with racing thoughts and
little need for sleep.
The children may also display a sense
of invincibility that leads to risk-taking or
self-harming behavior. The bewilderment
and remorse they feel over their own outof-character behavior may often result in
serious suicidal thoughts.
Bipolar children are often bright and
creative, and can be quite endearing and
likable between episodes, though some
are consistently irritable. Because they may
be able to hold themselves together in
w w w. c h i l d re n s h o s p i t a l o a k l a n d . o rg
places like preschool or among other relatives, their intermittent good behavior may
lead some to disbelieve their parents, or to
assume the children have total control over
their actions. Sometimes, particularly when
young children are exhibiting sexualized
touching, parents may be suspected of
abusing them.
Children with other conditions, such as
disruptive behavior disorder, attention
deficit and hyperactivity disorder, posttraumatic stress disorder, obsessive compulsive disorder, Tourette’s syndrome and
panic disorders, may also exhibit some
symptoms found in manic-depression. This
group of conditions may lie along what’s
known as the bipolar spectrum in children.
Many patients have symptoms of more
than one of these disorders, making diagnostic certainty difficult.
Because bipolar illness has strong
genetic roots, it is essential to ask about
any family history of serious depressions,
mania or behaviors often associated with
mania, such as alcoholism, criminality or
irresponsible financial dealings. Positive
answers to these questions may add a
degree of confidence to the diagnosis.
Children with bipolar-like symptoms
can be treated with behavioral therapy and
medications, though it often takes a great
deal of patience, as well as trials of various
combinations of mood stabilizers, to help
them control their impulses. Parents, often
blamed for their children’s behavior, may
feel alone with their problems. Joining a
support group can help.
To help the children see it’s not an
inherent badness in them that leads to
their severe or troublesome behavior, I
often tell them a story about the difference
between the mind and the brain.
Fortunately, most children who exhibit
these behaviors do not go on to develop
adult bipolar disorder; but so far we don’t
know why. Research in this newly recognized problem has focused on relieving
symptoms, not on understanding longterm outcomes. Dr. Schreier
graduated from the
Albert Einstein
College of Medicine
and trained in child
psychiatry before
moving on to Harvard
Medical School as a
Commonwealth
Foundation instructor at Children’s Hospital
Boston. He has been at Children’s Hospital &
Research Center at Oakland since 1977, when
he established clinics to treat bipolar children,
as well as children with Tourette’s syndrome,
obsessive compulsive disorder and those with
“social ineptitude” caused by neurocognitive
difficulties. Dr. Schreier can be reached at
510-428-3357 or [email protected].
SPRING 2005
to anyone else out there feeling alone and
suffering in silence, then all we’ve been
through will not have been in vain.
Our daughter just memorized
Hamlet’s famous soliloquy, “To Be Or
Not To Be.” She may not understand
what all the words mean, nor do I, but
she definitely understands that she is now
7
in a place where she wants “to be,” rather
than in her former pain, where she would
have voted “not to be!” Transformations Or Behind the Mask I Wear.
By Saskia Van Buren
Almost every transformation I've gone through in these last few
years is good. I never knew I had the talent to draw as well as I
can now. I started drawing when I saw my best friend doing these
awesome pictures. That really inspired me. At that time I kept
putting myself down. The pictures I was drawing at that time were
of my favorite band, so I decided to draw a picture of my favorite
guy in the band. It was a challenging picture for me at that time
because the guy was putting his hand out, but I did it pretty well
and that's when I stopped putting myself down. Now I can do shading
and just about everything except animals and backgrounds.
Unfortunately I still do put myself down when I do a bad drawing
but over time I will hopefully learn.
If I could change myself I would
change into a boy. I would like to
know how I would look at myself
and how others would look at me.
I think having a whole different
personality would be interesting.
Wearing baggy clothes and seeing
how they feel would be good. I
would also want to be nice.
When people see a transformation
in my face they see me getting
happier. It makes me feel better to
know that people see a funny, nice
me and not just a grouch, because a
while ago most of the time that's
how I felt. Sometimes I still feel
sad and want to be alone, but I feel
much better.
A shape that might represent my life
and changes would be a zigzag line. My
life is like that; I never stay on the
same path, even when I'm dirt biking I
always like to zigzag. Also a shape with
lots of points to represent all the hard
times in my life.
I know I will go through
puberty in the future, but
I think I will start actually
following through on my
obligations. One thing I say
almost every day is I'm
going to get the house
cleaned, but it never
happens. So hopefully I will
start following through.
That would help me in my
life a lot.
The color that would represent me
most would be yellow because it's
my favorite color and because I'm
blossoming, like a sunflower or like
the sun. I think I've made it clear
that I'm happy with my life now.
8
CHILDREN’S HANDPRINTS
When Sadie’s heart
first stopped, so did
her active and
independent life.
Back in the Game
Photography by Marianne Thomas
SPRING 2005
9
All photos © 2005 Marianne Thomas
BACK IN ACTION [left page top]: Sadie plays four square
at recess; [bottom left]: Sadie and her friends wash their
hands with a garden hose before making sno-cones;
[bottom right]: Sadie pauses in her busy school day; [this
page left]: Mom doesn’t worry now when Sadie goes to
choir practice on her own; [below]: A hug from mom
before taking off for a basketball game.
It started with an innocent bear hug
from a friend when Sadie was 4. Her
heart raced to 320 beats-a-minute,
then stopped completely. She
collapsed. It was the first of what
Children’s cardiologist Kishor
Avasarala, MD, calls “mini-deaths.”
It happened again when Sadie got
scared, or bent to tie a shoelace, or
stood in line in the cafeteria. Her
mom, Jaime, was afraid to let her
out of sight. She and Sadie became
inseparable, even at school. Sadie’s
activities were restricted; even recess
wasn’t fun.
At first, doctors were puzzled;
Sadie’s heart didn’t show any structural
disease. In 2003, they implanted a loop
recorder into Sadie’s heart muscle. The
loop recorder, a relatively new device,
acts much like a black box in an
airplane, recording all the heart’s data
during an episode. Doctors soon had
a diagnosis: catecholaminergic
polymorphic ventricular fibrillation,
a rare (in children) heart condition
that causes mini-heart attacks, and,
sometimes, death.
Dr. Avasarala immediately placed
Sadie on a beta blocker—medication
that reduces the heart’s workload and
lowers blood pressure—and implanted
a defibrillator. The beta blocker
reduces the likelihood of incidents
and the defibrillator gives the heart
an electric jolt if one occurs. In the
year and a half since the surgery,
Sadie had but one incident. The
defibrillator stopped it in seconds.
Sadie calls it the “guardian angel”
inside of her.
Today, Sadie, 9, is back to being
an active, agile kid. Recess is a ball!
And mom is free to go about her own
business. 10
CHILDREN’S HANDPRINTS
GARY TUIRCHIN
Meet Frank
Frank Tiedemann joined Children’s
Hospital & Research Center at Oakland
as president and chief executive officer
at the end of January.
Before coming to Children’s, Frank
presided over St. Mary’s Health
System, a $330 million regional
system that is part of Ascension Health
in Evansville, Ind. During his tenure
in Indiana, Frank used his strong
background in strategic planning and
business development to launch the
region’s first trauma center.
Previously, Frank held the position of
president at St. Paul Medical Center in
Dallas, Texas, and senior vice
president of system development at
Yale-New Haven Health System in New
Haven, Conn. He has also served as a
senior vice president of corporate
development at John Muir Medical
Center in Walnut Creek, Calif.
w w w. c h i l d re n s h o s p i t a l o a k l a n d . o rg
Children’s new president and CEO talks about his
first impressions, plans, aspirations and beliefs.
How do you want people to address you?
I’m Frank. I’m a pretty informal guy, so
I hope people will not call me Mr.
Tiedemann. I’ll answer to it, but I’d rather
people call me Frank.
What is your initial impression of the
place?
It’s even better than I hoped. And I
had a high opinion and vicarious knowledge coming in. It’s a place full of a lot of
very smart, very dedicated, very energetic
people, and I love all three of those, but
when you put them all together it’s wonderful. I enjoy the people immensely. The
passion that people have is so evident.
There’s just this energy in the place.
Yesterday I was having lunch with an old
friend from my John Muir days, and she
said the same thing: “If you walk into this
organization, it’s like a beehive of activity.”
You know, I have worked in all kinds of
hospitals, from 60 beds to 1,000 beds and
everything in between, but the energy here
is very exciting.
Do you think it has something to do
with Children’s being a pediatric
hospital?
It must. I can’t say that I’ve had a
direct experience with children’s hospitals.
I’ve certainly had pediatric departments
SPRING 2005
and I would say there is a big difference in
the energy between just being a department of a hospital and an entire organization. I think people’s sense of purpose is
very evident here, very up-front in all their
work, their language, and their attitude
toward their colleagues and patients and
families. That’s exciting to me. I’ve spent
years getting organizations to get to a kind
of awareness that’s already here, so I feel
very good about my starting point and
about where I think we can go in the
future.
What is your 100-day plan?
There are three things I hope to do.
First, I will do no harm. I’m fascinated
with the operational issues here. They are
very interesting and intricate, and I don’t
want to make any quick decisions or
moves to change things until I really
understand how everything is connected.
The second thing I’ll do is meet as
many people within the organization as I
can. I will also begin to meet the government leaders, the community leaders and
people in philanthropy who can be of help
to us. I am looking at the strategic relationships, too, meaning organizations with
which we can have more formal relationships that help our programs. These are
organizations that have reached out to us
in one way or another over the last few
years. So I’ll be introducing myself, learning about them and trying to make sense
of how relationships can be built with
them in order to enhance our programs.
Finally, and by no means least, is my
need to understand how the new building
project will play out. There is a [seismic
retrofit] deadline and that adds a certain
amount of energy to the whole decision,
but it is not yet clear to me what we
should build, where we should build and
how we should pay for it.
Good luck.
Thanks. Good luck to all of us. We
have to figure this out together. I’ve said in
my interviews, there are two types of political candidates. One kind says, “Trust me,
I have a plan” and the other one says “If
we all work together, we can figure out
what’s best for all of us.” I’m the latter guy.
I have a lot of ideas and opinions, but they
are based on really understanding the fundamental business issues and being sensitive to what the community and the internal workings of an organization want. I’m
really more of a team coach. I want us all
to feel good about the decision that we
make. So, I want to lead that way, rather
than say “Follow me, I have the right
idea.” My job is to listen, to help people
11
Is Frank at home different from Frank
at work?
No. I love what I do and it bleeds into
the rest of my life. Fortunately people
around me are forgiving of that. Though
I’m not as obsessed with work anymore...
Anymore?
Well, when I was younger, I think I
was obsessed with mastering skills.
What was the point in your career
when you felt….
Mastery?[laughs]
Yes.
I’ve never used the word mastery
before. I always say I’m a student because
there are so many new things to learn and
do all the time. But what I mean here is
that at one point in my first CEO-ship, I
realized that I was making an impact
without working sunup till sundown.
What are your dreams?
understand all the reasonable but conflicting ideas and to have us develop a consensus that we can live with and build support around, so that people feel comfortable moving in a very definite direction.
Not to turn things into a homogenized
answer that will satisfy but will not translate into a successful scenario. I like what
President Kennedy said: “Success has
many fathers, failure is always an orphan.”
My dream has been for some time to
find a setting where I can invest myself
totally. I’ve moved a number of times in
my career but I feel like I’ve come home. I
feel like I am not looking for the next big
thing. Here I hope to be able to do my
life’s work. I think it is going to take a
long time to get things to where they are
able to be. This is not a four-years-and-out
kind of deal. It’s going to be a solid seven
years till the building project is complete,
and that takes me closer to my swan song.
And it is not about building the building,
but it is about answering all the questions
that will set up this organization for the
next generation and beyond. I haven’t had
that opportunity before. I’ve had to clean
up after other people. To me this is really a
dream opportunity. 12
CHILDREN’S HANDPRINTS
researchrundownresearchrundownresea
Dietary supplement may
help children with genetic
blood disorder
By Tom Levy
Thalassemia minor is an inherited
form of anemia that is less severe
than thalassemia major. This
blood smear from an individual
with thalassemia shows small,
pale, variously-shaped red blood
cells. These small red blood cells
are able to carry less oxygen than
normal ones.
w w w. c h i l d re n s h o s p i t a l o a k l a n d . o rg
1
2
3
4
THALASSEMIA CELLS: [left]
Thalassemia major is an inherited
form of anemia, characterized by
red blood cell (hemoglobin) production abnormalities. This is the
most severe form of anemia, and
the body’s oxygen depletion
becomes apparent within the first
six months of life. Note the small,
pale, abnormally-shaped red
blood cells associated with thalassemia major. The darker cells
likely represent normal red blood
cells from a blood transfusion.
A dietary supplement called alpha-lipoic
acid (ALA) may give better, longer lives to
children with anemia-causing thalassemia,
the most commonly inherited single-gene disorder. So suggests Ash Lal, MD, a researcher
at Children’s Hospital & Research Center at
Oakland. Dr. Lal presented his findings in
March at the Eighth Cooley’s Anemia
Symposium, thalassemia research’s most
important international venue.
Thalassemia causes anemia by reducing a
person’s ability to produce hemoglobin, the oxygen-carrying
protein in red blood cells. As a result, organs become oxygenstarved, and affected children fail to thrive. Before
treatments existed, children with more severe forms of
thalassemia rarely lived past age 15.
While blood transfusions are the treatment for thalassemia,
they are double-edged swords because their byproduct can also
lead to cell damage.
Normally red cells break down slowly over a four-month
period, leaving the iron in their hemoglobin
5
BLUE STREAKS: Electrophoresis, a standard
technique used in molecular biology,
produced the image at left. It shows a
“snapshot” of five different molecules
produced in a human cell’s mitochondria
during energy production. The lightest
molecules moved farther faster and appear
in the uppermost dark blue band. Studying
the image helped Dr. Lal understand how
alpha-lipoic acid might protect human cells.
behind, which is recycled. But regular blood transfusions mean
more red cells in the body, more worn-out cells and more iron
than the body can either use or discard.
The excess iron acts as a catalyst, creating harmful oxidants,
or free radicals, that can damage the pancreas, liver, pituitary
gland, heart, and other organs. To remove the iron, physicians
prescribe compounds called “chelators.” The word’s origin
from “chela,” the pincer-like claw of crabs and other
crustaceans, describes chelators’ ability to grab and bind with
free iron, allowing a child’s kidneys to flush it out.
While chelators add years to the lives of children with
thalassemia, Dr. Lal’s research suggests that ALA can protect
cells from some of the oxidant damage caused by the iron that
chelation doesn’t remove.
ALA, an anti-oxidant, prevents proteins and lipids from
being damaged by oxidants or free-radicals. It also repairs molecules of naturally occurring anti-oxidants such as vitamin C
and E, and glutathione. These anti-oxidants are normally put
out of commission after neutralizing a free radical. ALA repair
enables each to carry out another reaction, and another, and so
on. Finally, ALA activates genes responsible for increasing production of other protective, anti-oxidant enzymes.
Dr. Lal has discovered that in lab-grown cultures of human
cells infused with excess iron, ALA mimics the molecular
medic work it could do for children with thalassemia, protecting their cells from much of the damaging effects of free iron
and other oxidants. He hopes to begin clinical trials soon. SPRING 2005
13
archrundownresearch
New research center gives
scientists powerful tools to
speed vaccine development
By Tom Levy
Immunological and vaccine research at Children’s
Hospital & Research Center at Oakland got a big boost in
February with the opening of a new 8,000 square-foot
Center for Immunobiology and Vaccine Development
(CIVD).
Located in the main building of Children’s Hospital’s
research institute, the CIVD brings together researchers and
new, more advanced equipment, creating a state-of-the-art
research center for understanding human immune systems and
developing vaccines.
“Our goal is to reduce the long lag time between the
identification of a new infectious disease and an effective
treatment,” said Bertram Lubin, MD, Children’s senior vice
president of research and president of Children’s Hospital
Oakland Research Institute (CHORI).
Current vaccine research at the institute focuses on better
understanding and fighting Neisseria meningitidis, Streptococcus
pneumoniae and Chlamydia trachomatis—microbes that cause
meningitis, pneumonia, and sexually transmitted diseases
(STDs) and eye infections that can lead to blindness.
Neisseria meningitidis is the bacterium that is responsible
for meningitis, an infection of the covering of the brain, as well
as a bloodstream infection that can kill a previously healthy
person in less than 12 hours. Group B strains of the bacterium
account for 30 percent of meningitis cases in the United States
and up to 80 percent of the cases in Europe. Still, there is no
vaccine against these strains.
Trachoma resulting from Chlamydia trachomatis infection
is the leading cause of preventable blindness in the world.
According to World Health Organization statistics, in some
parts of third-world countries, more than 90 percent of the
population is affected. The same organism is also responsible
for infections that are among the most prevalent of all STDs.
In women, they may result in pelvic inflammatory disease,
which is a major cause of
NEW DIGS: The biological safety
level-3 lab meets some of the
infertility, ectopic pregnancy
highest safety standards set by
and chronic pelvic pain.
the NIH and the Centers for
Pneumonia, an
Disease Control. Two rooms,
opportunistic disease,
separated by a massive
frequently attacks the
pass-through autoclave, are
pressurized to keep biological
weakest among us, including
materials inside the lab. Each
the elderly and children.
room is equipped with two
Safety is a major concern
pressurized biosafety cabinets
for researchers working with
in which researchers handle biosuch diseases. Specialized
logical materials. The cabinets
suck air into HEPA-level filtration
facilities and equipment,
for additional protection.
including powerful new microscopes, a DNA clean room and
a biological safety level-3 lab allows researchers to safely do
work they couldn’t do before.
Also helping researchers is CHORI’s 2005 budget of $46.5
million, the bulk of which comes from grants by the National
Institutes of Health (NIH), part of the U.S. Dept. of Health
and Human Services. CHORI ranks 14th highest among 113
children’s hospitals and pediatric departments for the amount
of NIH funding it receives.
Supplementing NIH funding are grants from other federal
agencies, philanthropic donations and collaborations between
CHORI researchers and private biotech firms, including
Chiron, Roche R&D, BioVeris and Trinity Biosystems. Join us at the frontier of science by supporting breakthrough research at Children’s
Hospital & Research Center at Oakland. Call Diane Mann, vice president, advancement,
at 510-450-7649. Learn more about research at Children’s. Visit www.chori.org.
14
CHILDREN’S HANDPRINTS
Educating
Hearts Minds
and
to Change
the World
Two former Children’s residents make sure that culture and poverty
do not stand in the way of healthcare for kids.
Written and photographed by Tom Levy
DOING WELL: Quynh Tran, MD, talks to Ann Chen about her 7-month-old baby boy. Benjamin needs to gain weight,
though he’s doing well after heart surgery at Children’s Hospital & Research Center at Oakland.
w w w. c h i l d re n s h o s p i t a l o a k l a n d . o rg
SPRING 2005
15
STREET TALKING:
John Pescetti, MD,
stops to chat with a
former patient outside
La Clinica de La Raza
in Oakland’s Fruitvale
district.
W
hen John Pescetti,
MD, steps outside La
Clinica de la Raza into
Oakland’s heavily
Spanish-speaking Fruitvale district, he
often runs into his patients. He chats
with them on the streets and in local
stores. “I feel like we (clinic staff ) are
part of the fabric of the place,” he says.
Quynh Tran, MD, also works at the
intersection of the personal and professional. The patients he sees at Oakland
Chinatown’s Health Services remind him
of his parents. “They are the people we
are working for,” says Dr. Tran. “No
health insurance because they’re working
for their friends. Minimal income. These
are the patients that we see, they are why
we are working here.” Born in Saigon,
Dr. Tran immigrated to Arkansas at age 3
with his parents and two brothers. In
Vietnam, his mother was a lawyer and
his father an Air Force pilot, but to survive in the United States they worked
lesser jobs and moved around.
It takes 10 minutes to drive the three
miles separating the two clinics where
Drs. Pescetti and Tran work. But the cultural landscape of their patients goes
from Mexico to the southern coast of
China by way of mainstream America
and reaches into the lower steps of the
economic ladder. Being familiar with this
landscape is what enables the physicians
to provide expert, culturally appropriate
care to their communities.
For example, Dr. Pescetti’s patients
may complain of susto. Susto is a folk illness in Latin America with strong psychological overtones defined as a “fright
sickness,” literally a loss of soul from the
body. Nervousness, anorexia, insomnia,
Of California children’s hospital training programs,
Children’s Hospital & Research Center at Oakland is
only to Children’s Hospital of Los Angeles
in the number of residents trained.
second
listlessness, despondency
and involuntary muscle tics
are just some of the symptoms that can be attributed
to susto, especially in the
presence of past trauma.
People living away from
home, such as immigrants,
are believed to be more susceptible. Also, some think
that breast milk might carry
susto from mother to child.
One mother in Dr.
Pescetti’s practice fed her baby less breast
milk and more formula to avoid susto
transmission. While Dr. Pescetti’s
Western medicine training tells him there
is no scientific evidence to support such
concerns, he also knows that beliefs can
have a strong hold on parental imaginations. As long as they do no harm, Dr.
Pescetti respects and indulges cultural
beliefs. Otherwise, he uses them as an
opportunity to educate, but never to
ridicule.
If ethnic backgrounds set Drs.
Pescetti’s and Tran’s patients apart, then
poverty brings them together. At La
Clinica, close to half of all patients are
uninsured. Medi-Cal recipients make up
about 42 percent of clients, 7 percent
have private insurance and 2 percent
have Medicare. At Asian Health Services,
20 percent are uninsured, 70 percent
have Medi-Cal and the remaining 10
percent have other medical insurance.
“The patients understand, they have
Medi-Cal, there’s hardly anywhere else
they can go,” Dr. Tran says. “But I still
want them to feel that even though
16
CHILDREN’S HANDPRINTS
there’s little choice for them to go
somewhere else, to see somebody else,
that if something were to happen, we
are giving them the best care they can
get.”
Drs. Pescetti and Tran both completed their medical residencies at
Children’s Hospital & Research Center
at Oakland, where about 30 percent of
inpatients on any given day are
Spanish-speaking and 65 percent of
kids have government insurance. Both
physicians recognize that exposure to
the cultural practices of the Bay Area’s
diverse populations as well as the concerns of disadvantaged families motivated and prepared them for the careers
they chose to pursue.
“The good work we’re doing here is
possible because of the good work
Why support teaching hospitals?
Independent children’s hospitals are barely a single
room in the structure of American medical care,
making up less than 1 percent of all hospitals. But
they’re a whole wing when it comes to training pediatricians. Thirty percent of pediatricians, 50 percent of
pediatric specialists and two of every three pediatric
critical care specialists do their residency training at
one of America’s 61 children’s hospitals, according to
the National Association of Children’s Hospitals and
Related Institutions (NACHRI).
More than 80 residents work and train at
Children’s Hospital & Research Center at Oakland
each year. Residents are physicians receiving three
years of additional training before they practice on
their own.
Though they are still learning, they’re also doctoring; it’s a form of paid apprenticeship. In addition to
the salaries residents earn, hospitals fund the cost of
supervision, on-the-job training and supplemental
education provided by highly paid medical staff.
Traditionally, training hospitals helped pay the cost
of graduate medical education by charging more for
patient care. But today’s competitive health marketplace makes that impossible. An untenable situation
has been developing ever since.
The last healthcare provider willing to reimburse
those higher fees is the federal government’s
Medicare program. And that’s only because Congress
recognizes that supporting graduate medical education is essential. Because Medicare is only for the
elderly, it can’t reimburse pediatric hospitals for
training the nation’s pediatricians. For a time,
children’s hospitals bore those costs alone.
w w w. c h i l d re n s h o s p i t a l o a k l a n d . o rg
Children’s is doing,” Dr. Pescetti says.
“Children’s takes that federal money
(see sidebar) and funnels it … and a
very significant proportion of
Children’s graduates stay in the
community, provide basic primary
care, and those are the programs that
I think are very valuable.” Speak out! Let your Representative
and Senators know that graduate
medical education at children’s
hospitals is important to you.
To learn how, visit
http://capwiz.com/cho/state/main/
?state=CA
In 1999, Congress
came up with a shortterm solution, authorizBecome an advocate for kids by
ing Children’s Hospital
joining the Children’s Hospital &
Graduate Medical
Research Center at Oakland child
Education (CHGME)
advocacy network, Children’s CAN.
funding to offset the
You will receive notices of important
more than $300 million
legislative actions related to healthNACHRI estimates it
care for kids as well as opportunities
costs children’s hospitals
to voice your opinions. To sign up
to run their residency
visit http://capwiz.com/cho/mlm/ or
programs.
call Susan Foxall at 510-428-3885,
Congress decided
ext. 4343.
that each hospital may
be reimbursed for training as many residents as it trained in 1996. This arbitrary number is now the “cap” determining how much
of the CHGME money Congress authorizes will go to
each pediatric teaching hospital. It’s seemingly set in
stone.
So far so good, but in four of the last five years,
presidential budget requests have asked for much less
than what Congress authorized and what children’s
hospitals need. President Bush’s FY 2006 budget
request asks for only $200 million of the $315 million
Congress said could be requested.
Funding graduate medical education is the
only way to ensure that people will have access to
physicians specially trained to care for kids. When all
is said and done, it is the lives of kids that are truly at
stake. th
AN
N utrit ion
this
this
this
this
this
that that that that
AND
AND
AND
AND
AND
SPRING 2005
that
Surgeon General Tours
Children’s Hospital
Dr. Richard Carmona talks about childhood obesity
during his visit.
When asked about
the next warning label
he would like to see
put on a product, U.S.
Surgeon General
Richard H. Carmona,
MD, MPH, FACS,
answered: “I’d put it
on parents and it
would say ‘Keep your
kids active.’”
THE SURGEON GENERAL: Dr. Carmona
The Surgeon
answers questions from reporters after his
general talk to the community.
General visited
Children’s Hospital &
Research Center at Oakland Feb. 22 to tour the facility and
address pediatric public health concerns.
Americans must improve their eating and exercise habits to
reduce the nation’s rampant obesity, said Dr. Carmona, though
that will require a significant cultural shift. In the years since
World War II, American life has radically changed, he said. It’s
now a culture where popular fast foods and sugary drinks are
consumed in vast quantities and some schools have eliminated
physical education programs.
“It really is going to take a lot of hard work by a lot of smart
people to change the culture of this nation,” Dr. Carmona cautioned.
To help face these and other challenges, Dr. Carmona has
launched his Year of the Healthy Child 2005 agenda. The initiative focuses on children’s health, from pre-pregnancy and prenatal healthcare through early childhood development, nutrition,
illness, injury prevention and safe teen driving.
Dr. Carmona said his job is like having the biggest medical
practice in the world.
“I have 290 million patients,” he joked. “You think your
office hours are bad.” this
this
this
17
this
this
that ANDthat ANDthat ANDthat ANDthat
AND
You Are What You Eat
New dietary guidelines aim to steer kids clear
of obesity and related illnesses.
Following the new federal dietary guidelines will not be a
piece of cake. The guidelines are based on the latest scientific
evidence, providing information and advice for choosing a
nutritious diet, maintaining healthy weight, getting enough
exercise and avoiding foodborne illness. Observing them will
improve children’s eating habits, helping kids avoid obesity,
type 2 diabetes, heart disease and certain cancers.
Key dietary guidelines for children and adolescents
include:
• Get 60 minutes of physical activity every day.
• Eat at least four and a half cups of fruits and vegetables
each day.
• Increase daily consumption of whole grains to half or
more of daily grain intake.
• Drink 2 cups (ages 2 to 8) to 3 cups (9 and older) of
nonfat or 1-percent milk, or milk equivalents, daily.
• Limit fruit juice intake.
• Limit salt to one level teaspoon a day.
• Encourage eating a wide variety of mono- and
polyunsaturated fats from fish, nuts and vegetables.
These fats should make up 30 to 35 percent of total
calories for children aged 2 to 3, and 25 to 35 percent
for those who are 4 to 18 years old.
• Be sure children and adolescents get enough vitamin E,
magnesium, calcium, potassium and fiber.
• Avoid raw milk and milk products, raw or partially
cooked eggs, raw or undercooked meat, poultry or fish,
unpasteurized juice and raw sprouts.
The U.S. Department of Health and Human Services and
the Department of Agriculture collaborated on the new guidelines, based on recommendations from the Dietary Guidelines
Advisory Committee chaired by Janet King, PhD, RD, of
Children’s Hospital & Research Center at Oakland.
A new federal Food Guidance System, to be released this
spring, will make the science-based dietary guidelines more consumer-friendly and will include a revised Food Guide Pyramid.
18
CHILDREN’S HANDPRINTS
A
Place
for
Kids
Written and photographed by
Gary Turchin
At Children’s Hospital &
Research Center at Oakland
we know that kids are not
just little people. They have
different needs from adults,
both physically and
emotionally. That’s why
Children’s is a great place
for patients, but it is first of
all a place for kids, providing
services well beyond expert
medical care.
w w w. c h i l d re n s h o s p i t a l o a k l a n d . o rg
ROLE REVERSAL: Tom Collins helps Zaira listen to dolly’s heart as her
parents look on.
Pre-Op with Tom:
Meeting the
Dragon
Medical play eases kids' fears and
makes procedures go smoothly.
F
our-year-old Zaira clings to her
mom’s side in the waiting area of
the outpatient surgery center at
Children’s Hospital & Research Center at
Oakland. When senior child life specialist
Tom Collins speaks to her in her native
Spanish, she smiles back shyly but doesn’t
reply.
Zaira watches as Tom pulls out a toy
syringe and a practice doll, and gives the
doll oral medicine. When coaxed, she darts
over, gives the dolly oral medicine too,
then retreats to safety by mom’s side. Tom
pulls out a stethoscope and listens to
dolly’s heart. Zaira darts in again to listen,
then quickly back. Their interaction is
playful, but it is more than a game. Tom, a
member of the pre-operative surgery team,
is preparing Zaira and her family for a
surgery they have scheduled in a couple of
days.
“There’s no minor procedure when it’s
your child,” Tom says. “Everything is
important and frightening. We can’t take
away the discomfort of the procedures or
the anxiety, but we offer methods that help
kids and families get a sense of mastery
over what is happening to them. We go in
where the dragon of fear is, and meet that
dragon.”
During the consultation, Tom takes
the family through a complete timeline of
operation day, using pictures of the gurney
and operating room to illustrate. He also
pulls out a breathing mask and an intravenous bag to show them what to expect.
He uses props, such as the doll and play
SPRING 2005
19
“We can’t take away the discomfort of the procedures or the anxiety, but we offer methods
that help kids and families get a sense of mastery over what is happening to them.
We go in where the dragon of fear is, and
meet that dragon.” Tom Collins, senior child life specialist
equipment, so children
can mimic performing the
procedure that awaits
them. Kids begin to feel
more like participants in
the process, not objects.
The 15 to 20 minutes
Tom spends with each
family preparing for surgery can have a dramatic
impact. At age 2, Mary
Gaston’s son William
has already had three
surgeries.
“Before we met Tom,
Will didn’t let anyone touch him,” Mary
says. “He was clingy and resistant. Tom
worked with him and made some suggestions for us that made a world of difference.”
Tom suggested giving Will his own
doctor’s kit so he could practice on
stuffed animals. At his next visit, Will
knew what was coming and it helped
tremendously.
“It’s at the point now that he is really
good with his healthcare provider,” Mary
adds.
Tom also encouraged the family to
make a storybook of Will’s hospital experiences.
“Now we talk to him in story form
about what is happening and he gets it,
he knows it’s about him but it’s also a
story,” Mary says.
Tom’s work did more than help
William. “It had a big impact on us,
too,” Mary acknowledges. “It’s taught us
how to relate to Will and how to deal
with him now and in the future. Tom
gave us a framework and tools to use, and
we’re very thankful.”
The psychological benefits of Tom’s
work translate into medical advantages.
“I noticed early on that when Tom
spent time with a family the kid had an
easier time going to sleep,” says anesthesiologist Jonathan Clarke, MD. “If the kid
has an easier time, I have an easier time
as well. A crying child’s tears can get in
his airway, impairing breathing. If a child
has been prepared by a child life specialist, these incidents are greatly reduced.”
Videos For
What Ails You
Filmmaking helps children work
through problems.
O
ld pals Jake and Harry skateboard around town with
Harry’s dog Scruffy in tow.
Unbeknownst to them, Tank, Punchy
and Wrench show up in their neighborhood. When guys like Tank, Punchy and
Wrench enter a scene, it can only mean
one thing: Trouble with a capital “T.”
Thus the characters and scenario of
the movie The Frame Game unfold.
Schyler Peck-McNally and Brian Hickel,
both 12, are the young filmmakers; the
schoolroom at Children’s Hospital &
Research Center at Oakland—their
studio.
While they brainstorm the script,
the boys busy themselves molding the
CINEMATOGRAPHY LESSONS [top]:
Brian rehearses a skateboarding
scene as Devora Kanter of Bay Kids
watches.
CAMERA LESSON: Devora coaches
Schyler on camera technique.
characters out of clay and building sets
from art supplies. Markers make perfect
bars for the jail our heroes will soon
occupy after they’ve been framed for a
jewelry heist by you-know-who.
CHILDREN’S HANDPRINTS
Devora Kanter of BayKids coaches
and helps the directors in their first
production. A filmmaker and facilitator, Devora has visited the school every
Thursday for three years, bringing the
equipment, the expertise and the simpatico needed to see projects through.
“The films aren’t always fantasy or
clay-animation like this one,” Devora
says. “They are often very autobiographical. I try and encourage the voice
that’s inside of kids. What comes out is
usually what needs to.”
Devora recalls one girl, who after
an accident left her paraplegic, made a
film for her classmates telling her story.
“This way she didn’t have to explain
her situation again and again,”
Devora states. “She was also able
to make it clear in the film that
she was essentially the same person as before.”
School program teacher
Maggie Greenblatt has seen a lot
of movies made over the years.
“There’s always a common
theme in the fantasy films,” she says,
“good triumphs over evil, kids are lost
and can’t find their way home or they
figure a way to get out of a bad situation. It’s always a metaphor for their
lives. They’re working it out, and the
films are a really healthy way to do it.”
In Brian’s and Schyler’s movie, it’s
Scruffy who saves the day. He finds a
ring and brings it to the police. By dint
of artistic license, the ring is bigger
than the heads of the characters. A fingerprint is found on it that points to
the real culprits. Jake and Harry are set
free. Tank, Punchy and Wrench are
apprehended. Good triumphs again. w w w. c h i l d re n s h o s p i t a l o a k l a n d . o rg
a place for kids
20
T
d
s
T
e
o
Let’s Play!
Play is to kids what work is to adults. In a hospital, play is a
way to carry on with life. Staffed by Child Life specialists,
Children’s three playrooms have stacks of toys and games
and activities, and even more importantly, other kids to
play with. Siblings welcome.
* Contribute
art supplies.
Call the artist-inresidence, at
510-428-3885,
ext. 4424.
* Donate books to the
giving library. Call Susan
Martinez, director of
patient services and
guest relations, at
510-428-3471.
* Offer financial support
to Child Life Services.
Call Children’s Hospital
& Research Center
Foundation at
510-428-3885, ext. 2846.
SPRING 2005
25
Teen Scene
School Days, Cool Days
Hey look, being a teen is
What’s more normal than going to
different. You just don’t under-
school? At Children’s we have a fully
stand.
But
at
Children’s
accredited school program staffed by
Hospital we do understand.
credentialed Oakland Unified School
That’s why our teens have a
lounge to hang out in, commis-
District teachers. Our regular and special
erate, play bingo or foosball, or
education teachers help patients learn in
maybe just chill. Like the play-
personal and age-specific ways. When
rooms, the teen lounge is an
children are bedridden, our teachers
official “no-procedure zone” so
take the classroom to them.
pokes and probes are out-ofbounds here.
For Art’s Sake
A hospitalized child has a lot to think about.
Expressing these thoughts and fears creatively can
make a healthy difference. Our artist-in-residence
provides plenty of arts and crafts opportunities for
patients, regardless of physical limitations, to let it
all hang out, creatively speaking.
Half Pint Library
The “Art While You Wait” program provides a
variety of arts and crafts materials and
guided projects for patients and their siblings
waiting for surgery, clinic appointments or treatment in the Emergency Department.
Where Families Can Get Answers
How about a book for a child to read or a video to watch?
Need more information about your child’s diagnosis?
The Family Resource & Information Center (FRIC) provides
family-centered, culturally sensitive, age-specific resources
for kids and their families. When a family needs to know
something, the folks at FRIC will help them find out.
Reading is contagious!
Children’s Hospital gives
away 10,000 books a year
through its Half Pint
Library carts. Six carts
stacked with new and gently used books are always
ready for the offering.
When asked, “Can I take
more than one?” We reply,
“Please!”
22
CHILDREN’S HANDPRINTS
Too Cool for School
Children with extended hospital
stays keep current on schoolwork
and technology
W
hen a child is admitted to
Children’s Hospital &
Research Center at Oakland,
parents often want to know: “What happens if my child misses a lot of school?”
Because success in school is essential
to children’s self-esteem and well-being,
the continuation of education is an
important part of the recovery plan for
every school-aged child hospitalized at
Children’s. The school also provides a
reassuring bridge between home and
hospital.
Led by credentialed Oakland
Unified School District teachers,
Children’s Hospital’s School Program
features a rich curriculum in a fully
equipped in-house classroom with bedside teaching provided for kids unable to
attend classroom sessions.
Like any modern school, Children’s
School Program recognizes that technol-
w w w. c h o f o u n d a t i o n . o rg
ogy is a powerful instructional tool
and an essential component of any
classroom.
The Pine Family Media Center,
the technology and media center of
Children’s schoolroom, is both a place
of learning as well as a gateway to the
world beyond the hospital walls.
Children and teens can not only learn
new skills and complete school assignments, but also communicate with their
school staff, fellow students and friends.
Because hardware, software and
other supplies needed for operation of
the technology and media center are not
supported in the budget provided by the
Oakland Unified School District,
Children’s must rely on philanthropy to
provide this service.
Recently, Children’s was fortunate to
receive a lead grant from a local foundation that will provide much of the funding needed to bring the most up-to-date
technology and media education to our
young patients. Additional support from
the community is required to completely
HELP [left]: Terika and Jerry, a
volunteer, work out homework
problems at Terika’s bedside.
1+[X-B]=C [top right]: Maggie
Greenblatt, school room teacher,
gives an algebra lesson to a patient.
LEARNING TOGETHER [bottom
right]: Isaac and his mom go over
his lessons for the week.
upgrade the hardware and software,
particularly the many academic-related
programs available for students.
If you are interested in helping
Children’s school program provide
up-to-date technology and media
tools to our hospitalized students,
please contact Ken McKinney at
510-428-3885, ext. 2846, or email
[email protected]. SPRING 2005
23
Gentle Hands Teach Parents
in the ICN
W
alking through an intensive
care nursery can be both
intimidating and aweinspiring. Babies who are born prematurely may weigh less than two pounds
and fit in the palm of a large adult’s
hand. Life-saving equipment with signs
and sounds unfamiliar to the layperson
surrounds them, as does the buzz—
sometimes hushed, sometimes frantic—
of a critical care environment. The hightech equipment is crucial to providing
care, but it may also make parents feel
isolated from their child. Developmental
specialists work with
physicians, nurses, and other
care providers to reduce the
stress of a baby’s hospital stay
and help parents develop
relationships with their
newborns.
Building a healthy relationship depends on a parent’s ability to
interpret their baby’s subtle messages, so
they can recognize when to offer their
face, soft voice, or gentle touch in ways
that are comforting. But babies in the
nursery can appear alarmingly fragile and
their parents may be frightened to touch
them, let alone hold them. The Gentle
Hands Program teaches parents how to
touch their baby by using their infant’s
readiness as a guide. Once the baby is
medically stable, specialists encourage
skin-to-skin holding. Children’s developmental specialists are also certified to
teach parents how to massage their baby
when he or she is ready. Studies have
shown that medically challenged infants
who receive massage may feed better,
sleep more, and have greater weight gain.
Developmental Care in the Intensive
Care Nursery receives crucial funding
from generous supporters like the East
Bay Neonatology Foundation and the
Weyerhaeuser Family Foundation.
Because of the growing number of
patients, funding from the community
is needed to meet current and future
needs. If you would like to support
Developmental Care in Children’s
Intensive Care Nursery, please contact
Ken McKinney at 510-428-3885, ext.
2846 or email [email protected].
TENDER MOMENT [top left]: Mom
cradles her newborn.
Children’s Thanks the Community
for New Research Center
C
hildren’s Hospital &
Research Center
Foundation hosted an event
on Feb. 4 to commemorate the
grand opening of the new Center
for Immunobiology & Vaccine
Development at Children’s Hospital
Oakland Research Institute
(CHORI). The $5.6 million center
was made possible by a $2 million
grant from the National Center for
Research Resources of the National
Institutes of Health and completed
through the generosity of hundreds
of donors. Read about the scientific
work conducted in the new center
in Research Rundown on page 12.
[left] Principal investigator Deborah Dean, MD, MPH, at left, talks with donors
about her work developing a vaccine against Chlamydial infections—the world’s
leading cause of sexually transmitted diseases and preventable blindness.
[right] CHORI President Bert Lubin, MD, and Oakland City Councilwoman Jane
Brunner celebrate the opening of Children’s new Center for Immunobiology &
Vaccine Development.
24
CHILDREN’S HANDPRINTS
A Woman of
ubance
By Lynn Sagramoso
Just shy of five feet tall and weighing
a scant 90 pounds, Marie Antoinette
Fox’s petite stature was the only thing
small about her. “Grama was a vibrant,
super-friendly woman who loved life,”
says Marie’s granddaughter, Sheryl
Guistolise. Even at the age of 99, she
enjoyed excellent health, and part of her
regimen included riding her Lifecycle a
mile every day.
Marie’s vitality and kind, supportive
nature were hallmarks of her personality,
and she shared that energy generously
with her family, friends and community.
Because she set up a charitable lead trust
naming Children’s Hospital & Research
Center at Oakland as a charitable beneficiary, that legacy of support to her family
and community continues even
though she passed away last year.
Born in Holland in 1904, she
came to the Bay Area with her husband, Bill Fox, in 1927. A woman
with old-world manners who valued
good education and a strong work
ethic, Marie was a telephone switchboard
operator for Pacific Bell for 47 years.
After her retirement, Marie volunteered
her time and sunny disposition for 27
years to staff the gift shop at the Carmel
Branch of Summit Medical Center in
Oakland. It is no small wonder that
Marie had many close friends and
delighted in spending time with them at
lunches and other social events.
Family was very important to
ALL TOGETHER NOW: Friends and family celebrate Marie’s 100th birthday.
w w w. l e g a c y f o rc h i l d re n s c a re . o rg
Marie. She was central to the lives of her
son Jerry, four grandchildren (Susan,
Stephen, Sandy and Sheryl), nine greatgrandchildren (Erin, Ashley, Britney,
Bryan, Johnny, Matthew, Andrew,
Brandon and Lauren), and extended
family, all of whom lived less than two
hours away. “Our lives and our children’s
lives are so much richer because of her,”
granddaughter Susan Kupka says. “She
was so supportive of everything we did,
Always stylishly dressed, Marie was
never seen without her hair and nails
done, and she had a smile ready for
everyone she met. She extended her
generosity and upbeat disposition not
only to her large family and many
friends, but also to noble causes in
her community. She named Children’s
Hospital & Research Center at Oakland
a beneficiary of her charitable lead
trust.
and made us feel special, like we could
and should accomplish anything we
wanted. She reinforced the idea of hard
work and honorable, healthy living to all
of us.”
The last six years of her life, Marie
lived with her son Jerry, and was able
to be a wonderful companion to her
daughter-in-law Rita, who has multiple
sclerosis. “I will never forget that about
Grama,” Susan says, “she could always
raise my mother’s spirits with her
thoughtful, encouraging words.”
A few months before her 100th
birthday, Marie was diagnosed with
cancer. Knowing that her time was
limited, her family and friends came
together for an early birthday party. “At
the party, she said that she felt so good,
like she was getting better,” confides
Jerry. “We couldn’t ask for better than
that.” Marie passed away quietly in her
sleep eight days later.
Marie had a special place in her heart
for kids, and worked to make their lives
richer. She was a good steward of her
resources, so it was a natural choice for
her to set up a charitable lead trust, to
benefit both Children’s Hospital and her
family. “There are so many worthwhile
institutions, but Children’s Hospital is
special and we wanted to make sure that
such a necessary, amazing place continues
in our community,” Jerry explains.
By making this contribution to the
health and welfare of children, Marie’s
generosity of spirit will continue to be
felt for years to come. SPRING 2005
25
he benefits of
charitable lead trusts
Imagine loaning your assets to your
favorite charity for a few years, then
giving that same asset, plus any growth,
to your children or grandchildren, while
also saving money on taxes. You can do
just that with a charitable lead trust
(CLT). A CLT is a great planning tool
because it can serve your philanthropic
goals and enable you to pass assets to
your children during life or at death,
while reducing gift or estate taxes.
Who might benefit from a CLT?
• A person with an unusually large
income in one year, for example, from
the sale of a business. The CLT income
tax deduction can offset that income.
• A family that already makes a
significant level of charitable gifts each
year. Using a CLT increases the tax benefit.
• A couple who wishes to make gifts
to family members at a reduced gift or
estate tax cost.
How does a CLT work?
• You transfer an income-producing
asset to a CLT. The income is paid to a
charity you choose for a term of years
you select.
• Depending on the type of CLT,
you may get an immediate income tax
deduction based on the amount of
income that is paid to your charity
annually.
• If the CLT is created during your
lifetime, you will receive a gift tax
deduction.
• If the CLT is created upon your
death, your estate taxes will be reduced,
passing more money on to your children.
• At the end of the term, the assets
will be transferred to your family, according to your directions.
A CLT Example
Mr. and Mrs. Flint are 62 years old.
They have two daughters, ages 32 and
34. They have $500,000 in corporate
bonds that pay 6.25 percent annually.
The Flints don't need the income from
the bonds. The Flints’ children are doing
quite well, so they don't need the
income from the bonds right now either.
The Flints would like
With a little planning,
to give a portion of
the bonds to
the Flints accomChildren's Hospital
plished their goals of
& Research Center
at Oakland, but they
leaving a charitable
would also like to
legacy as well as a
set aside a portion
tax-free gift for their
of the bonds to
boost their chilchildren.
dren's retirement
nest egg. If they give the bonds to their
children now, they would have to pay
taxes.
The Flints decide to create a CLT
with the $500,000 in corporate bonds.
The bonds pay income of 6.25 percent
annually. The CLT is set up to pay the
income from the bonds, $31,250 per
year, to Children’s Hospital for the next
30 years. This means that the Flints are
able to give nearly $1 million over the
next 30 years to Children’s Hospital.
At the end of 30 years, when the
Flint children are ages 62 and 64, all of
the corporate bonds—the full $500,000
plus any growth—will be given to the
Flint children outright. The children will
pay no taxes on the transfer. Each child
will receive an additional $250,000 for
her own retirement.
The Children's Hospital & Research Center Foundation can work with you or your
financial advisor to establish a framework for charitable giving that meets your
philanthropic and financial goals. For more information about CLTs and other
charitable planning options, call Margaret Zywicz at 510-428-3361.
26
CHILDREN’S HANDPRINTS
Children’s Hospital & Research Center at Oakland
Leadership
Board of Directors
Leila Gough
Bertram H. Lubin, MD
Mary Lanctot
Harold Davis, Chair
Tom Herman
Liliana Nordbakk
Sharon Smith
Pamela Cocks, Vice Chair
Scott Hoffinger, MD
Betty Jo Olson
Ayn Thorne
Arthur D’Harlingue, MD,
Vice Chair
Gordon “Skip” Huber
Michael Petrini
Leonard Kutnik MD
Robert Rowell
Senior Leadership
Eric Rudney
Frank Tiedemann, President and
Chief Executive Officer
Robert C. Goshay, PhD,
Vice Chair
Barbara May, Vice Chair
Edward Ahearn MD
Jeffrey Cheung
Bertram Lubin, MD
Alex Lucas, PhD
Carol Mimura
Linda Murphy
Henry Gardner
Donald Godbold, PhD
Howard Gruber, MD
Foundation Board of
Trustees
Wallace Smith, Esq.
Frank Tiedemann
Branches Board of
Directors
Betty Jo Olson, President
Rosa Anderson
Sandy Bemiss, Acting Senior
Vice President and Chief
Financial Officer
David Bertauski, Interim Senior
Vice President and Chief
Operations Officer
Scott Hoffinger, MD
Harold (Tim) C. Warner, PhD,
Chair
Howard Jackson
Marc R. Kunney, Vice Chair
Mary Davis
Watson M. Laetsch, PhD
Thomas Bret. Esq., CPA, CFP,
Secretary
Barbara Demmon
Alden McElrath
Sanjiv Sanghvi, Treasurer
Masud Mehran
Jane Logan, Board Advisor
Linda Murphy
Cornell C. Maier, Board Advisor
Belinda George
Betty Jo Olson
James Armstrong
Tina Gomez
Howard Pien
James M. Betts, MD
Madeline Newkirk
Mary Rutherford, MD
Sandy Bemiss
Orvie Pamp
Peter Sheaff, MD
Sharon Brandford
Mary Jane Rogers
Frank Tiedemann
Renee Christensen
Cyndi Santaella
Howard C. Warner, PhD
Harold Davis
Mary Ann Suva
Steven J. Didion
Cece Werson
Mark A. Ericsson, Esq.
Lynne Wilson
Nancy Shibata, RN, Vice
President, Nursing
Erol Gokbora
Family House Board
Members
Greg Souza, Vice President,
Human Resources
Robert (Bob) Goshay, PhD
Sandra Humphries, President
Leila Gough
Penny Johnson, Vice President
Michael Petrini, President,
Children’s Hospital & Research
Center Foundation
Children’s Hospital
Oakland Research Institute
Board of Directors
Watson M. Laetsch, PhD,
Chair
Edward Ahearn, MD
James Betts, MD
Debbie Civello
Joy Fassner
Karin Franchuk
Patricia Killeen Felton
Belinda George
Howard Gruber, MD
Jack Carlson
Jan Wolfe, Treasurer
Randolph W. Hall
Jeffrey Cheung
Jackie Baker
James Hanson, MD
Harold Davis
James J. Keefe
Arthur D’Harlingue, MD
William S. Keller
Sharon A. Le Duy
Sophie Bedrosian
Sharon Braun
Jackie Ducey
James Betts, MD, Senior Vice
President and Surgeon-in-Chief
Mary L. Dean, Senior Vice
President, External Relations
Howard Gruber, MD, Interim
Senior Vice President, Medical
Affairs
Bertram Lubin, MD, Senior
Vice President, Research
Marva L. Furmidge, Esq.,Vice
President, Legal & Risk
Management
Don Livsey, Vice President and
Chief Information Officer
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