Spring 2014 Newsletter

Caped Crusaders Making a Difference
Heroes 4 Higher
bringing uplifting messages for WVUCH patients
On the Cover:
Earlier this year, some very special guests
visited WVU Children’s Hospital patients to
remind them and their families that tough
things make us stronger.
That message was delivered by Batman,
Spiderman, Captain America, and Bat Girl,
collectively known as Heroes 4 Higher.
The Heroes 4 Higher, based in Huntington,
brought their lesson on the “Four Things
That Heroes Do” to the children and
parents gathered in the WVUCH Activity
Center.
According to Batman (AKA John Buckland),
the four characteristics of a hero are:
1. Heroes never give up, no matter how
tough the situation may be. 2. Heroes
always do the right thing, even when
nobody’s looking. The better we are at
following the rules, the greater we will
become. 3. Heroes help other people. The
best way to become great is to look for
chances to help others. 4. Heroes never
bully. Even if someone treats us badly, we
need to treat them nicely.
Batman also had a lesson for the adults:
Kids learn more by what we do than what
we say. We have the chance to inspire them
to be great.
Each child received a bracelet with the
words “tougher and greater” on them. All
four superheroes signed pictures to pass
out to the kids.
For the parents in the room, Batman
handed out what he called “grown-up
cards” and told them that if their kids were
ever having a tough time, they now had
Batman’s number.
Finding
A Hidden Killer
More than 34 million Americans suffer
from high cholesterol. Familial hypercholesterolemia (FH) is an underdiagnosed
form of the disease marked by extremely
high cholesterol and high risk of an early
heart attack.
Katherine Wilemon was told she had high
cholesterol at age 15. After suffering a
heart attack at age 38, doctors diagnosed
her with FH.
“That is not an unusual story,” she said.
“In people with FH, you can actually test
them at birth, and you would be able to
tell if they had FH. We have cholesterol that
builds up our entire lives.”
First-degree relatives have a 50 percent
chance of having FH. When a patient is
diagnosed, doctors suggest cascade
screening of their family members. Cascade
screening means to test and possibly
diagnose the first-degree relatives of each
person diagnosed with FH.
Now, Wilemon, who is president of the FH
Foundation, is partnering with Bill Neal,
MD, WVU Children’s Hospital cardiologist
and founder of CARDIAC, to stress the
importance of cascade screening to people
of West Virginia.
“When we find a child who has extremely
high cholesterol that is diagnostic of FH,
we can predict that one parent, half of their
siblings, half of their other first-degree
relatives, and a quarter of their seconddegree relatives will have the disease,” Dr.
Neal said. “Cascade screening means that
we should screen all of the family members
so we can diagnose the problem before it
becomes a problem.”
One in 500 people has FH, and 90 percent
are unaware they have the disease. The FH
Foundation is creating a national registry
to help patients identify if they have a
relative with the disease.
Individuals with FH have 20 times the risk
of an early heart attack, but the earlier they
receive treatment, the more likely they are
to have a normal lifespan.
To find out more about the National FH
Registry, visit www.thefhfoundation.org.
2014 Champion Child
Allissondra Waldron
Nathan and Jessica Waldron of Morgantown
welcomed their daughter via emergency
caesarian section on Oct. 8, 2009. She was
perfectly healthy until 6 months of age
when she was admitted to the hospital for
an unexplained high fever.
Just before her first birthday, Allissondra
started exhibiting startling symptoms. Her
eyes started turning out to the sides, and
her eyelids began to droop. Doctors at
WVU Children’s Hospital diagnosed a then11-month-old Allissondra with myasthenia
gravis.
Helping Local Kids
“The nerves don’t communicate well with
the muscle. The chemicals that do that
communication aren’t as effective as they
should be,” Maggie Jaynes, MD, pediatric
neurologist, said. “What we see with her is
that she sometimes has difficulty moving
her eye, but you also see that her lid will
come down as she’s looking at things.”
For the first year after diagnosis, Allissondra
was in and out of the hospital every few
months to receive intravenous
immunoglobulin (IVIG) and steroids.
Eventually, her hospitalizations became
complicated, and she needed to be sedated
in order to place PICC lines because her
veins were too weak to hold IVs.
In September 2011, a year after her
myasthenia gravis diagnosis, Allissondra
randomly started vomiting. She soaked
through diapers, drank lots of water, and
was unable to keep anything down.
In the Emergency Department at Ruby
Memorial Hospital, the Waldrons received
a huge shock: Allissondra was in diabetic
ketoacidosis and was very seriously ill. Her
blood-sugar level was over 700. She was
admitted to the WVU Children’s Hospital
Pediatric Intensive Care Unit (PICU) for
treatment and education for home care.
A month later, Nathan and Jessica woke
to a screaming and convulsing child.
Allissondra was in
the midst of a hypoglycemic seizure and
was rushed to the
hospital via ambulance. Her myasthenia gravis symptoms
began to worsen
due to the stress on
her body, and she was hospitalized
again in November 2011 to receive IVIG.
When the IV treatment failed to help her,
Allissondra was scheduled for surgery.
help patients with myasthenia gravis
and may lead to remission. The surgery
took between five and six hours, and
afterward, Allissondra stayed in the PICU
for about a week.
The surgery appeared to be a success.
Allissondra was nearly symptom free
from January to June 2012. In July, she
was again admitted to WVU Children’s
Hospital for another round of IVIG. While
days before her third birthday, she fell
and broke her ulna and radius. On
Halloween, she was rushed to the hospital
due to another hypoglycemic seizure.
In spite of all of her health problems,
Allissondra is still an energetic, playful,
happy little girl.
“She’s not her disease. She’s Allissondra,”
Dr. Jaynes said. “When you see her, you
forget that she has
such problems just
because of the way
she is.”
In spite of all of her health problems, Allissondra
is still an energetic, playful, happy little girl.
“She’s not her disease. She’s Allissondra.”
In December 2011, Allissondra underwent
a trans-sternal thymectomy. With the
help of medication, a thymectomy – the
removal of the thymus – is believed to
Allissondra was under sedation for
placement of another PICC line, doctors
discovered an irregular heartbeat. She
was then diagnosed with idiopathic
tachycardia, an arrhythmia, and was
placed on daily medications.
Allissondra returned to WVU Children’s
Hospital twice in October 2012. A few
Why We Give
“Jamie and I give to WVU Children’s Hospital because we know the
tremendous significance of the work done there and the difference
that the hospital makes in the lives of so many children. We feel that
as West Virginians we are so blessed to have a hospital the caliber
of WVU Children’s Hospital in our state, and we have a tremendous
passion for the less fortunate youth that need treatment there. To
know that these children are getting the best care possible in their
time of need is of great importance to my wife and me.”
- Steve Antoline
Mom and Dad are
in awe of how well
she handles all that
comes with her
conditions. “She’s the strongest person
I’ve ever met, and she’s 4-years-old.
She’s so much stronger, and she’s been
through so much more than anybody
that you know,” Jessica said.
“We have to fight for her,” Nathan added,
“just as hard as she does for herself.”
WVU Children’s Hospital
welcomes Dr. Don Nakayama
Pediatric Surgeon
Calls his Work
a Privelage
In September, WVU Children’s Hospital welcomed Don K. Nakayama,
MD, MBA, as its newest pediatric surgeon and the new chair of
the WVU Department of Surgery. He and his wife Natalie came to
Morgantown from Macon, Ga., where Dr. Nakayama had been chair
of surgery at the Mercer University School of Medicine. Nearly six
months into his new position, he is settled comfortably in his office,
where the walls are lined with personal memorabilia and photographs
of past patients who have stayed in touch. He took a few minutes
between cases to answer some questions.
What attracted you to pediatric surgery?
SION
EXPANA
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Consider Making a Planned Gift
Remembering WVU Children’s Hospital in your will is a
wonderful way to ensure that the goodness in your heart
continues to help children after you’re gone. A commitment
to WVU Children’s is a gift of life, health, and faith in the
future. Learn more at givetowvukids.com.
DN: Aside from the fact that it’s very cool? I enjoyed pediatrics
because I enjoyed the scientific aspect, the developmental aspect,
the being able to touch families in a very profound way. And then I
enjoyed surgery, so I decided that it’d be a great place to combine
the two.
It’s a privilege. To help a family, to help a pediatrician with a
problem, you have to respect the unique role that you have. I feel
like I’ve been blessed to be able to be in the place that I’m in.
It’s a great job.
Do you have children of your own?
DN: Yeah, they’re all grown.
How does being a parent affect your work?
DN: They say that being a pediatrician doesn’t make you a better
parent, but being a parent makes you a better pediatrician. There’s
great power in the attachment of parents and children. It’s a
profound responsibility to have someone give you their child and
say, “Take my child, give them anesthesia, and somehow I trust you
to make them whole and give them back to me better than they
are now.” We’re not just operating on the child; we’re providing
care to the whole family.
Do you remember a particular family or
interaction that touched you?
DN: Nearly every contact with parents is special in some respect.
I’ve got pictures of kids that I’ve been in contact with, as do most
pediatricians. They aren’t just some kids I take care of. One kid’s a
baseball star, and two other kids are going to college. So it’s cool.
As a newcomer, what were your first impressions
of WVU Children’s Hospital?
DN: The thing that’s impressive is the depth of the commitment of
the people who work here. They’re passionate about providing care
to children and about providing a high level of quality care to the
families of the state. There are fancier hospitals around, but I was
impressed by the quality of the people and the work that they do.
Visiting other pediatricians in the Morgantown area and the upper
part of the state is a priority. I think that the network that we have is
a strong one, and I intend to see all the pediatricians and pediatric
providers in the state. I’m working from the area around Morgantown
outward, and I’m looking forward to visiting everybody.
What do you do outside of work?
DN: I like to write. My avocation really is writing. My mentor when
I was growing up was the associate editor of the Denver Post, a Japanese-American guy, Bill Hosokawa. I worked for the Denver Post as a
copyboy for two years prior to college. Every summer, I’d come back
and write for Bill. Now, I write from about 5:30 to 7 every morning.
What do you write about?
DN: I write about stuff that has a medical twist to it. I wrote about
the Japanese-American experience in World War II, the concentration camp, and what medicine was like there. I wrote about the civil
rights leader that desegregated the hospitals and the assassination
attempt of Martin Luther King. One’s going to come out about
the surgical clinic that was directly underneath the atomic
bomb in Hiroshima.
Tell me about a current project.
DN: I’m studying the Grange, an organization of farmers that
began after the Civil War. Among the things they did was to set
prices for fair transport and storage of grain. The same kind of thing
is happening among rural practitioners of medicine and surgery.
They’re kind of the forgotten people in American medicine. We’ve
got these programs to encourage new doctors to practice out in
rural areas, but the feeling is that they’re going to be out there by
themselves. So how do we support them? You can’t support them
individually, or you can’t support the hospital, or you can’t
support the community, but you have to see it as a triad. That’s
why I’m studying the Grange.
Grand Bash raises much-needed
funds for WVUCH
The first ever West Virginia Grand Bash was held on Saturday,
Jan. 18, at the Ruby Community Center at Mylan Park in
Morgantown. And, the response was overwhelming.
“We never expected to have 4,000-plus people show up for
the event. In fact, we would have been happy if half that
many people attended,” Cheryl Jones, RN, director of WVU
Children’s Hospital, said. “We are so grateful for the outpouring
of support we received for this event, and we hope to have
just as many people, if not more, participate next year.”
Ticket holders won thousands of dollars in cash and prizes,
including a Mercedes C350 Coupe, Chevy Camero and
Silverado, Dodge Ram, and a Ford F150.
“This was our first time holding an event like this. We hit a
few road blocks along the way with things like food and
drinks, and we apologize for that,” Jones said. “But, you live
and you learn. Now that we know what to expect, we can take
the necessary steps to have an even grander bash next year.”
The next Grand Bash will be held on January 17, 2015.
Tickets will go on sale July 1. Visit www.wvgrandbash.com
for more information.
Healthy Moms
Healthier Babies
Despite all the information about diet, nutrition, and exercise at
our fingertips, relatively few Americans practice healthy eating
habits and more of us are obese than ever. The extra weight
can affect hormonal balance, often increasing the time it takes
to conceive a child. For many couples, making needed lifestyle
changes while undergoing treatment for infertility presents a
real challenge.
Helenia Sedoski, RD, is a WVU Healthcare registered dietitian
guiding West Virginia University Center for Reproductive
Medicine (WVU CRM) patients to healthier lives and pregnancies.
“There is so much conflicting information out there about
ways we should be eating and living,” Sedoski said. “Learning
to eat better and exercise is intimidating enough without the
added pressure of trying to get pregnant. It’s a commitment to
change that involves preparing meals at home, reading labels,
learning portioning – I try to break it down into small,
manageable changes people can incorporate one at a time.”
A loss of 10 percent of a patient’s body weight over a six month
period can dramatically increase a woman’s chance of conceiving
within a year, and small changes combine to make a big impact
on health of both mother and baby. Sedoski continues to
provide counseling and support following a successful
pregnancy into breastfeeding.
“A nursing mom’s diet determines the quality of her milk, and
breastfeeding can help the child learn self-regulation in regards
to how much to eat,” Sedoski said.
Roger Toffle, MD, in vitro fertilization
director at the Center for Reproductive
Medicine and professor of obstetrics
and gynecology at the WVU School of
Medicine, said services like Sedoski’s are a
surprisingly rare offering among fertility
clinics but are a much needed addition.
“Since I began practicing in West Virginia in 1984, the proportion
of infertility patients who are obese has skyrocketed,” Dr. Toffle
said. “Between 1984 and 1989, obesity was present in 19.3
percent of patients presenting for evaluation of infertility. In
2012-2013, that number increased to 43.3 percent.”
In addition to infertility, obesity is associated with insulin
resistance and adult onset (Type 2) diabetes, gestational diabetes,
hypertension, miscarriage, fetal abnormalities, heart disease,
and more. Weight loss decreases the risk of these conditions, and
improves fertility in different ways.
“In patients diagnosed with polycystic ovary syndrome (PCOS),
impaired glucose tolerance can be greatly improved through
weight loss,” Toffle continued. “Excessive testosterone can be
reduced, often leading to restored ovulatory function. Though
many PCOS patients are obese, not all are. Proper nutrition can
help symptoms, regardless of weight.”
In women with PCOS, early pregnancy loss has been reported
to be as high as 40 percent, but the risk can be diminished with
dietary changes and weight loss. The risk of gestational diabetes
also drops as weight is shed.
“No one is saying it’s easy, and I wouldn’t tell a patient it will be,”
Sedoski said. “But when you consider the tremendous benefits
positive lifestyle changes have on fertility issues and pregnancy,
a planned approach with the help of a professional makes the
process far more manageable.”
To learn more about services offered by the WVU Center for
Reproductive Medicine, call 304-598-3100.
Become a Permanent Part
of WVU Children’s Hospital’s future
When considering a gift to WVU Children’s
Hospital, make one that will be a part of WVU
Children’s Hospital forever.
For example, your gift could purchase a Window
of Hope. Hospital stays are difficult for anyone
but especially for children. A Window of Hope
will provide our patients with an inspiring
view during their stay with us. Some look out
to Mountaineer Field, where the annual GoldBlue Game is held to raise funds for Children’s.
Others have views of the scenic mountains in
the distance. For $10,000, you can sponsor the
view from an inpatient care room window. No
matter which direction they face, these windows
provide both patients and visitors with a
connection to the outside world and hope for
a better tomorrow.
Or, why not put your name on one of our
nurses’ stations? Nurses’ stations are busy
centers of activity, where nurses and
physicians consult on patient care and where
patient tests, procedures, and treatments are
coordinated. For $25,000, you can name a
nurses’ station in either the Pediatric Intensive
Care Unit (PICU), Neonatal Intensive Care Unit
(NICU), or Acute Care Unit (6 East).
Speaking of 6 East, you could name one of the
rooms in this unit. These rooms are equipped
to provide acute care to children from birth
through 21 years of age who are receiving
world-class care from one of WVU Children’s
Hospital’s experts. For $50,000, you can name
one of the 25 acute care rooms in 6 East.
There are also rooms where very highly
specialized care is delivered. In the NICU, Wee
Baby Rooms are for babies born at less than 27
weeks gestation. Typically, these babies weigh
less than 2 pounds and are the tiniest patients
at WVU Children’s Hospital. Over in the PICU,
intensive rooms are completely equipped to
provide specialized care to children who need
critical care because of illness or injury. Wee
Baby Rooms and PICU rooms can be named
for $100,000 each.
Children from all over West Virginia and the
surrounding region come to WVU Children’s
Hospital to receive the highest quality of care
possible. Your gift will help ensure that never
changes – for your children, your grandchildren,
and for generations of children to come.
To inquire about these and other naming
opportunities, please contact Megan
Skubovius at 304-598-4346 ext. 5.
WVU Children’s Hospital Annual Gala
Puttin’ On the Ritz
More than 1,000 supporters of WVU Children’s Hospital at Ruby
Memorial were “Puttin’ on the Ritz” on Saturday, Feb. 8, at the
11th Annual Gala, which was held at the Morgantown Event
Center at Waterfront Place.
Larry Rhodes, MD, chair of the WVU Department of Pediatrics
and physician-in-chief at WVU Children’s, encouraged Gala
attendees to Bid for Good in support of the WVU Children’s
Hospital Fetal Diagnostic Center (see sidebar).
Mike Clark, evening news anchor at WTAE in Pittsburgh, served
as the master of ceremonies. During the program, Robert
Gustafson, MD, chief of pediatric cardiothoracic surgery and
surgeon-in-chief at WVU Children’s, presented the 2014 WVU
Children’s Hospital Award to Bruce McClymonds, president and
CEO of WVU Hospitals.
This year’s Gala included two new features – a second, afterhours live auction and the Mercedes CARe for Kids Raffle. A total
of 15 big ticket items were up for grabs during the live auctions,
including trips to Ocean City, Maryland, North Carolina’s Outer
Banks, and the beaches of Jamaica.
Bobby Nicholas, manager of development for WVU Children’s,
presented the 2014 Children’s Hospital Community Service
Award to Andy and Diana Claydon of Morgantown.
The evening wrapped up with two musical acts – Big Bad
Voodoo Daddy and Powerhouse Band.
Photo Captions:
A. (From left to right) Denese Carter,
Valerie Fletcher, Robert Fletcher, Diane
Lewis Jackson, Kenny Jackson, Debbie
Robinson, Angela Maxwell, and
Twyla Coffman
B. Big Bad Voodoo Daddy hit the
stage first
C. Bruce McClymonds, president and
CEO of WVU Hospitals, receives
congratulations at the announcement
of his selection as the winner of the
annual WVU Children’s Hospital
Award.
D. Approximately 1,000 people
attended this year’s Gala. This is just
a portion of the crowd.
E. WVU President E. Gordon Gee, PhD,
(standing, center) talks with George
Spirou, PhD, (right) director of the WVU
Center for Neuroscience, and Allie
Karshenas, PhD, director of clinical
operations for the WVU Clinical and
Pharmacologic Research Center.
F. (From left to right) Cheryl Jones, RN,
director of WVU Children’s Hospital, and
her daughter, Amanda Jones, pose for a
photo with Deedee and Brent Wilmoth,
chair of the WVU Children’s Hospital
fundraising campaign
G. Andy and Diana Claydon, owners
of University Motors, received the WVU
Children’s Hospital Community
Service Award.
H. The guests at the Toothman Fordsponsored table: (left to right) Joe
Radcliff, Brian and Buffy Lough, Brad and
Rachel Summers, Alex Langdon, Paige
Miller, Stephanie Toothman, Jennifer
Lowry, and J.R. Toothman
WVU Children’s Hospital
Fetal Diagnostic Center
The number of pregnant West Virginia women receiving prenatal care
during all three trimesters of their pregnancy is well below the national
average. The rate decreases drastically the further the mother is from a
major medical center, like WVU Children’s Hospital.
Some women are able to travel hours for regular appointments in our
Morgantown clinics. However, a lot of women are not. The lack of prenatal
care and diagnostics leads to delayed diagnosis of complications and risky
deliveries for women across the state.
With enough help from generous donors, we will be able to establish a
centralized WVU Children’s Hospital Fetal Diagnostic Center. The center
will provide comprehensive diagnostic testing, prenatal services, and
prenatal education to the expectant mothers across the state.
Early diagnosis of complications or birth abnormalities will allow mothers
and their doctors to prepare delivery and treatment plans, many of which
may include delivering at a tertiary clinic, like WVU Children’s. Prenatal
care services and education will allow for healthier, more successful
pregnancies and deliveries—providing a brighter future for our youngest
Mountaineers.
For more information on supporting the Fetal Diagnostic Center,
call 304-598-4346 ext. 5.
WVUChildren’s
Children’sHospital
Hospital
WVU
POBox
Box8200,
8200,ROC117
ROC117
PO
Morgantown,WV
WV 26506
26506
Morgantown,
Make a Gift That Makes a
Difference
For many of us, nothing is more precious than the lives and health
of children. Your gift to WVU Children’s Hospital is a way to help
children when they’re most vulnerable.
You can learn more at wvukids.com.
Complete this gift form and send to:
WVU Children’s Hospital, PO Box 8200, ROC117
Morgantown, WV 26506
Step #1 Fill in Your Personal Information (Please print clearly)
Name ___________________________________________________________________
Address _________________________________________________________________
City________________________State ______ Zip __________ Phone:_______________
Step #2 Make Your Gift
(Gifts are tax deductible as provided by law.)
Monthly Pledge
I want like to make a monthly pledge over the next 3 years:
[] $10 a month [] $25 a month [] $50 a month [] $_____ a month
One-Time Gift
[] Enclosed is my one-time $______gift payable to WVU Children’s Hospital
Step #3 Method of Payment
[] Check or Money Order Enclosed
[] Credit Card – please visit givetowvukids.com OR call 304-598-4346 to arrange
[] Stock Contribution – please call 304-598-4346 to facilitate
Step #4 Please Use My Donation to Support:
[] Greatest Needs
(Currently Building Expansion Fund)
[ ] Supportive Care Program
[ ]Fetal Diagnostic Center
[ ] Other ___________________________
Thank you for making miracles happen.
WVU Children’s Hospital Leadership
Larry Rhodes, MD
Physician-in-Chief
Chair, Department of Pediatrics
Michael Vernon, PhD
Chair, Department of Obstetrics and Gynecology
Cheryl Jones, RN, MSN
Director
Executive Editors
Dee O’Palko
Angela Jones-Knopf
Questions or comments:
[email protected]
Contributing Writers
Sarah Felton
Leigh Limerick
Mary Power
Inpatient and most outpatient services of WVU Children’s Hospital are operated by West
Virginia University Hospitals, a member of the West Virginia United Health System.