http://www.etch.com/about_us/its_about_children.aspx Read these stories in Issue 1 2014 of It's About Children by East Tennessee Children's Hospital: - Despite the challenges of her condition, Raelyn Haun is anything but frail. - From birth to behind the wheel, see how we’ve made an impact in Jonathan Johnson’s life. - When Luke Copas was born, his brain had no room to grow. Twelve years later, he’s a published author.

2. Mark Your Calendar
MAR.
22
Dancing with the Knoxville Stars
7 p.m. to 11 p.m.
Knoxville Expo Center
Sponsorship table prices range from $1,000 to
$
10,000; additional tables are $400 to $500;
general seating is $60 a ticket.
Call 865-541-8441 or visit www.etch.com/DWTKS
to purchase tickets. Proceeds go toward the
purchase of medical equipment at the hospital.
APR.
26
Color Me Rad 5K
9 a.m.
Knoxville Civic Auditorium-Coliseum
Registration is $37. Use the code CHILDREN5K
to save 5 percent and have 15 percent go to
Children’s Hospital.
Visit www.etch.com/ColorMeRad to register.
Proceeds go toward the purchase of medical
equipment at the hospital.
MAY
17
Car seat inspections
9 a.m. to 12:30 p.m.
Oak Ridge Fire Department
It is free.
You do not have to register to attend. We
will teach you everything you need to know
to make sure your car seat is used and
installed correctly.
2
It’s About Children, Issue 1 • 2014

3. Spotlight
JUN.
23
Peyton Manning Golf Classic
Morning round begins at 8 a.m.;
afternoon round begins at 1:30 p.m.
Fox Den Country Club
Sponsorship packages range from $500 to
$
25,000; individual tickets are $350.
Call 865-541-8441 or visit www.etch.com/
GolfClassic to register for the event or for
sponsorship opportunities. Proceeds go
toward the purchase of equipment in our
Emergency Department.
APR.
7
5
MAY
CPR class for parents and
teens age 14 and older
6 p.m. to 10 p.m.
Children’s Hospital’s Koppel Plaza Building
(Meschendorf Conference Room)
Class costs $25.
Call 865-541-8262 to register. Learn CPR so
you can respond to emergencies in your home.
4
A hunger to get stronger
9
Seeing the future clearly
Despite the challenges of her
condition, Raelyn Haun is anything
but frail.
From birth to behind the wheel,
see how we’ve made an impact in
Jonathan Johnson’s life.
12
A Titanic recovery
16
We need you
When Luke Copas was born, his
brain had no room to grow. Twelve
years later, he’s a published author.
When a child gets sick or injured,
we get to do our best. Still, we can
do more. And you can help.
Connect with us:
MAR.
29
26
APR.
Safe Sitter class for teens
age 14 and older
9 a.m. to 3 p.m.
Children’s Hospital’s Koppel Plaza Building
(Meschendorf Conference Room)
Class costs $25.
Call 865-541-8262 to register. Learn correct
babysitting techniques, emergency responses
and how to use babysitting as a business.
Donate at www.etch.com/ItsAboutChildren
www.etch.com/ItsAboutChildren
It’s About Children is a publication
of the Marketing Department at
East Tennessee Children’s Hospital.
Editor: Paul Parson
Designer: Deborah Hosterman
Cover photo by Michael Dayah
3

4. 4
It’s About Children, Issue 1 • 2014

5. Story by
E. Anderson
Photos by
Michael Dayah
Donate at www.etch.com/ItsAboutChildren
5

6. Little Raelyn Haun has a fan club at East Tennessee
Children’s Hospital. While visiting the hospital for her frequent
appointments, the 18-month-old and her mom, Alissa, are
quickly surrounded by doctors, nurses and the many clinical
staff members who have cared for Raelyn her entire life. And
Raelyn readily soaks in the attention from her adoring fans—
greeting them with her brightest smile and happy coos.
For the Hauns, Children’s Hospital is more than a hospital.
It’s a home full of love and familiar faces—people who have
become family.
In 2012, Alissa was surprised to learn she was pregnant
with a baby girl. She already had her hands full with her then
6-year-old son, Cameron, who suffered with an autoimmune
deficiency that required multiple surgeries and weekly
infusions in his leg. Alissa’s pregnancy seemed to go as
planned—but she was unaware that a common virus would
change the course of their lives forever.
Early ultrasounds showed that Raelyn had echogenic
bowel—a bright area on her intestine that can be an
indication of a chromosomal abnormality. Then, during
Alissa’s third trimester, tests showed that the ventricles of her
baby girl’s brain were enlarged. Doctors performed a cesarean
section when Alissa was 38 weeks pregnant, and immediately
took Raelyn for more tests and treatment.
“I didn’t get to hug her or kiss her or anything,” Alissa
said. “It was so hard. I didn’t even get to hold her for 14
hours.”
6
Tests showed that Raelyn had cytomegalovirus (CMV), a
common virus that affects 50 to 80 percent of adults in the
U.S. by the time they are 40. Most children or adults who
contract CMV show either no signs of illness or just those
of a common cold or flu. CMV stays with a person for his
lifetime, going through periods of dormancy and active
infection. Most people never even know they have it,
but when a mother passes CMV to her unborn child, the
long-term effects can be devastating.
“I just remember when they told me that she had CMV
saying, ‘OK, well, how long until it’s gone?’” Alissa said.
“They said, ‘You don’t understand. This will affect your baby
her entire life.’ I can’t even begin to describe how I felt.”
The Hauns were able to take Raelyn home to meet her
new family for a few days. Then, at just 7 days old, Raelyn
began an eight-week course of inpatient treatment at
Children’s Hospital. She was given Ganciclovir, an antiviral
drug often administered to post-transplant patients, to prevent
CMV from spreading to healthy cells. The treatment caused
Raelyn to lose the full head of dark hair with which she was
born. During those two months at the hospital, Alissa and her
family—Raelyn’s brother, Cameron, especially—were grateful
for the kindness the Children’s Hospital staff showed them.
“Cameron spent his entire summer break at the hospital
with us. He was so scared for his sister. But the nurses know
Cameron really well and they’d take him outside to play,
or dress up like cops and robbers for him,” Alissa said.
“I don’t know how I’d have made it without the people at
Children’s Hospital and all the support they gave us.”
It’s About Children, Issue 1 • 2014

7. Following treatment, Raelyn was able to
go home. Alissa and her daughter only had to
travel from their home in Sevierville to Children’s
Hospital for short visits. Then, when Raelyn was
6 months old, she suffered her first grand mal
seizure. She was also diagnosed with failure to
thrive—meaning she wasn’t gaining weight as
expected—and was given a feeding tube.
Raelyn’s CMV has affected nearly every system
of her body in some way. In addition to the seizures,
she has anemia as well as a neurogenic bladder, which
causes a lack of bladder control and often requires
catheterization. She also has quadriplegic cerebral palsy,
which affects all four of her limbs and makes wearing braces
on her arms and legs necessary. She takes 11 medications
daily—some several times a day—and in addition to regular
appointments at Children’s Hospital, Raelyn has three
different therapies—speech, occupational and physical—
every week. Still, despite her daughter’s limitations, Alissa is
determined to give Raelyn a bright future.
“You hear about all these medical problems she has,
and you expect to see this frail little child. But she has a
hunger to get stronger. I can see it,” Alissa said.
Pediatric physiatrist Nadine Trainer, M.D., is the Medical
Director of the Rehabilitation Center at Children’s Hospital,
and sees Raelyn regularly.
“She really is such a beautiful little girl, and she has a
naturally great temperament,” Dr. Trainer said. “No matter
what she has to undergo while she’s here, she always has a
smile on her face that just lights up the room.”
Alissa has become an advocate for CMV awareness
and prevention—leaning on online support groups and
becoming involved in annual conventions for other parents
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like her through the Brendan B. McGinnis Congenital CMV
Foundation.
“CMV is preventable, but so many people don’t know
about it. I don’t want hundreds of thousands of other moms
to go through what I do,” she said.
Alissa also relies on the care and support she receives at
Children’s Hospital.
“I have never taken my kids anywhere else. There’s
another hospital five minutes away from me, but I’d rather
drive an hour because I know I’ll get the best care possible at
the hospital where they know my kids as well as I do.”
continued on page 6
continued on page 8
7

8. •
•
•
•
8
About one in every 150 children is born with a congenital
CMV infection. One in five of those infants will suffer
permanent effects as a result of CMV.
CMV is classified among the same viruses that cause
chicken pox and shingles. It is a common virus that is
usually harmless. Among every 100 adults, 50 to 80 will
contract CMV before they are 40. Most will not know,
as the virus often remains dormant.
CMV can be transmitted by close contact with people
who have CMV in their urine, saliva or other bodily fluids.
It can be spread from a mother to her unborn fetus.
About one to four of every 100 women who have never
been infected with CMV have their first CMV infection
during pregnancy. About one-third of women who
become infected with CMV for the first time during a
pregnancy will pass the infection to their infant.
Nadine Trainer, M.D., Medical Director of the
Rehabilitation Center at Children’s Hospital, said she often
treats children with CMV, but the effects can manifest
differently in each child.
“Most pregnant women don’t know they have it. They
could just have respiratory symptoms,” she said. “There’s no
rhyme or reason why some people get it and others do not.
It is one of the major causes of cerebral palsy.”
Dr. Trainer said preventing CMV is similar to preventing
common colds or other illnesses.
“Good hand-washing and hygiene is really the key,
especially while you’re pregnant—and just using common
sense around people who are sick,” she said.
It’s About Children, Issue 1 • 2014

9. ade Payne
Photos by W
Donate at www.etch.com/ItsAboutChildren
by Audrey Madigan
continued on page 10
9

10. continued from page 9
Deana and Jeff Johnson had been waiting a long time
for this day. Their much-hoped-for baby, a son named
Jonathan, had arrived. But their joy soon turned to concern
when Jonathan’s doctor thought something was wrong with
the newborn’s right eye.
“I can remember thinking, ‘We’ve waited so long for
a baby, something can’t be wrong,’” Deana said.
Her doctor recommended a pediatric ophthalmologist
examine Jonathan as soon as possible. That’s when Gary
Gitschlag, M.D., from East Tennessee Children’s Hospital,
entered the Johnsons’ lives. After a careful examination,
Dr. Gitschlag discovered Jonathan had a cataract in his right
eye. The Johnsons were shocked.
“We’d never heard of a child having cataracts before,”
Deana said. “We thought cataracts only developed in older
adults.”
But unfortunately, that’s not the case.
A dangerous situation
Approximately three out of 10,000 infants younger than
age 1 have cataracts. The number increases between the ages
of 1 and 10. However, identifying cataracts or other vision-
related problems in infants is difficult because they cannot
speak. It is even harder if they are born with poor vision
10
because they have no way of telling the difference between
their vision and what normal should be.
The eyes work like a camera. Each eye has a lens that
helps focus on visual images. The lens of the eye, normally clear,
brings objects into focus on the lining inside the eye called the
retina. When the lens becomes cloudy and obstructs vision, it
is called a cataract.
Cataracts in children are particularly dangerous because
they may interfere with vision development. If, as in the case of
Jonathan, a cataract is present in only one eye, the child prefers
to use the good eye and ignore the eye with the cataract. This
can lead to amblyopia (lazy eye) and strabismus (wandering eye)
or even permanent vision loss.
A challenging treatment
Surgery to remove Jonathan’s damaged lens was the first
step in his treatment.
“Here I was, a new mother having to put my 1-month-old
son in the hands of a total stranger. I was so frightened,” Deana
said. “Even preparing Jonathan for surgery was difficult. A
person can’t eat or drink before surgery so I wasn’t able to feed
Jonathan before his operation. I had a 1-month-old baby crying
to be fed, and I couldn’t do anything for him. Knowing he was
hungry and not being able to help him was so hard.”
Their trust in Dr. Gitschlag was well-placed. The surgery was
successful. But that was only part of what needed to be done. In
some sense, the hardest part of the treatment was yet to come.
Jonathan now had to start wearing a contact lens in his
right eye.
“Putting a contact into the eye of a 6-week-old baby was
not easy,” Deana said. “Putting a contact into the eye of a
toddler was even more difficult.”
In addition to wearing a contact, Jonathan’s good eye had
to be patched to force his brain to use the eye with the lens.
Deana admits it was a real struggle keeping an eye patch on
Jonathan 10 hours a day for four years.
It’s About Children, Issue 1 • 2014

11. A successful
outcome
The Johnsons’ perseverance and
hard work paid off. Today, Jonathan has
no vision impediments. The Sevierville teen
can do whatever he chooses to get involved
in—even play basketball, which he loves.
“Jonathan’s parents played a huge role
in the success of his treatment,” Dr. Gitschlag
said. “It’s tough to go through what they did.
It takes team work with this kind of treatment.
I have a part and parents have a part. Without
them, it doesn’t work.”
The team also includes Dr. Gitschlag’s staff.
“We had no idea when we first began this journey how
important Dr. Gitschlag and his staff members would become
to us,” Deana said. “They are like family. They have known
Jonathan all his life.”
Jonathan is now 16 years old. The tiny baby Dr. Gitschlag
first treated is a head taller than he is and obtained his driver’s
license recently. A milestone made possible by his parents’
loving dedication to repairing his sight and Dr. Gitschlag’s care.
Visit www.etch.com/ItsAboutChildren to
experience Jonathan Johnson’s journey.
Donate at www.etch.com/ItsAboutChildren
11

12. 12
It’s About Children, Issue 1 • 2014

13. ATita ic re o e
n
c v ry
Story by R.J. Vogt • Photo by Michael Dayah
When Luke Copas was born, his brain had no room
to grow.
Today, 12 years later, Luke’s brain has produced two
question-and-answer books—a third book is due this year.
You might call it a titanic recovery.
On June 26, 2001, Luke joined the Copas family. His
mother, Sabrina, immediately thought something about Luke
seemed different.
“The front of his head was perfect, but the back was
cone-shaped,” she said. “His face was perfect. It was
beautiful.”
Despite friends and family who tried to convince her Luke
was fine, Sabrina persisted. During his two-month checkup,
Sevierville pediatrician James Hollingsworth, M.D., discovered
that Luke’s sagittal suture had fused, preventing normal skull
growth. Luke needed an operation.
Hollingsworth immediately directed Sabrina and Luke to
East Tennessee Children’s Hospital and Lewis W. Harris, M.D.,
the only fellowship-trained pediatric neurosurgeon in East
Tennessee.
Harris set the surgery for Sept. 19, 2001. Although the
events of Sept. 11 were keeping Sabrina’s husband, Robby,
busy at a nearby Air Force base, he was able to be at
Children’s Hospital for his son’s surgery and recovery.
Before beginning the surgery, Harris carefully explained
all the details involved in Luke’s surgery to Sabrina.
After a difficult surgery, Harris delivered a healthy baby
back into Sabrina’s grateful arms.
“I don’t believe things just happened out of luck,” Sabrina
said. “I believe they are answered prayers, and Children’s
Hospital plays such a pivotal, key role in that.”
Not long after Luke’s surgery, Sabrina started to notice
other peculiarities about her son.
“He was very stoic, very quiet—and he studied
everything,” Sabrina said, adding that at the age of 18
Donate at www.etch.com/ItsAboutChildren
months old, Luke basically potty-trained himself.
“At 2, he started putting together puzzles like they
were nothing to him,” she said.
Luke’s learning curve continued to improve, and by
age 4, Sabrina began to marvel at his voracious appetite
for the written language. At the time, Robby was deployed
to Iraq, so to pass the time Sabrina said she would read to
Luke, as mothers tend to do.
Unlike most little boys, however, Luke was uninterested
in monsters or wizards or talking animals. Luke wanted to
hear about the Civil War and the Bible. His love for history
deepened in the third grade.
“He had a teacher who had a book that was called
882½ Amazing Answers to Your Questions About the Titanic,
and he memorized it, verbatim,” Sabrina said.
Whether describing the Titanic to his classmates or his
family, Luke could not stop sharing facts about the infamous
shipwreck. While attending a young authors’ conference,
the young boy presented his own book of facts about the
Titanic; one of the guest lecturer authors expressed a prophetic
prediction.
“He said he had never seen a book like that,” Sabrina
said. “He told Luke right there, ‘You will be a published author
someday.’”
Weeks later at the grand opening of the Titanic Museum
in Pigeon Forge, Luke had a chance to share his book with
Mary Kellogg-Joslyn, a TV producer who co-owns the Titanic
Museum. She asked if the museum could have his book
published to be sold there.
Two book deals later, Luke has had opportunities to meet
descendants from the ship’s crew as well as participate in
book signings.
“Honestly, if it weren’t for Children’s Hospital, Luke’s life
wouldn’t even resemble what it is today,” Sabrina said.
13

14. News
Responding to behavioral
health needs
In an effort to meet the needs of regional pediatricians
and care for more of the community’s children, Children’s
Hospital opened its Developmental Behavioral Center Jan. 1.
Led by Deborah Christiansen, M.D., the center is
designed to bridge the gap between general pediatrics and
any subspecialty—like psychiatry or neurology—associated
with a developmental or behavioral diagnosis.
The center was established in direct response to area
physicians, who, in our recently completed comprehensive
community health needs assessment, identified behavioral
health as their first priority in addressing the unmet needs
of their pediatric patients.
When a child’s primary care or subspecialty care
physician refers his patient to the center, Dr. Christiansen
and her team perform a comprehensive evaluation and
formulate a customized treatment plan. They assess the
child’s chronological and developmental age and often
make referrals to other disciplines, such as psychology or
14
physical, occupational or speech therapies, to complete the
evaluation. Our team also is committed to keeping the
referring physician informed throughout the process.
Our behavioral health team specializes in the
medical management of conditions including:
• Attention-deficit/hyperactivity disorder (ADHD)
• School-related learning problems
• Mild anxiety
• Autism spectrum disorders
• Mild depression
• Developmental delays
• Sleep disorders
• Feeding problems
• Tic disorders
Visit www.etch.com/DBcenter for
more information about the
Developmental Behavioral Center.
It’s About Children, Issue 1 • 2014

15. Helping children sleep
At one time or another, every parent has coped with
a child who will not sleep. While they vary in severity, sleep
disorders are becoming more prevalent in children and
adolescents and can affect a child’s behavior, mood,
schoolwork and overall health.
In January, Children’s Hospital opened the Sleep
Medicine Center at our west campus, located on Westland
Drive at Pellissippi Parkway. The center, which provides
easier access to families for sleep assessments and the
latest diagnostic testing equipment for sleep medicine, has a
soothing environment featuring art with sleeping animals.
Ehab Mansoor, M.D., who is board-certified in
pediatrics and fellowship-trained in sleep medicine, leads
the center, which is the only one in the area to offer
pediatric and adolescent sleep disorder expertise. Patients
who are referred to the center will have an initial assessment
by Dr. Mansoor and his team to determine if testing and
treatment, including a sleep study, are needed. The center
provides clinical evaluation, diagnosis and management of
pediatric sleep conditions.
Our sleep lab was previously located in the Neurology
Department on the main hospital campus. Within two years,
the need for sleep studies at Children’s Hospital
is expected to grow more than 25 percent.
Visit www.etch.com/sleep for more
information about the Pediatric Sleep
Medicine Center.
One of the country’s top hospitals
The Leapfrog Group recently announced its 2013 list
of Top Hospitals, including Children’s Hospital.
We were one of 13 pediatric hospitals honored for
setting the highest standards in safety and quality. Top
Hospitals have lower infection rates, higher survival rates
Donate at www.etch.com/ItsAboutChildren
for high-risk procedures, decreased lengths of stay and
fewer readmissions.
Out of all the adult and pediatric hospitals receiving
the award nationwide, we were the only hospital in
East Tennessee and one of only five in the state.
“Our staff earned this award because of their tireless
dedication to our patients. They make a lifesaving impact
every day, and I am so proud of them,” said Keith Goodwin,
President and CEO of Children’s Hospital.
The award is given annually to the highest performing
hospitals on the Leapfrog Hospital Survey. It is not given to
a set number of hospitals, but rather to all urban, rural and
pediatric hospitals that meet the high standards defined in
each year’s Top Hospitals methodology.
The 2013 Top Hospitals list was closely culled from a
record number of 1,324 hospitals voluntarily participating
in the Leapfrog Hospital Survey. To qualify for this honor,
eligible hospitals must also earn an “A” from Leapfrog’s
Hospital Safety Score, which grades hospitals based on
expert analysis of infections, injuries and medical errors.
15

16. Every day parents do the best they can for their children.
They prepare healthy meals for them.
They make sure they’re dressed appropriately for the weather.
They help them with their homework.
They make sure they get plenty of sleep.
But when their children get sick or injured, that’s when the staff at
Children’s Hospital gets to do our best. We offer the specialized pediatric
care that children need during these crucial times.
Still, we can do more. And you can help.
Our new expansion project will feature a 268,000-square-foot, five-story
building. The space will expand services for children with chronic conditions such
as cystic fibrosis and other special needs. Forty-four private Neonatal Intensive
Care Unit (NICU) rooms will enable us to give the best possible care to our tiniest
patients. We’ll also add new operating rooms and desperately needed new
parking spaces. Enhanced family areas, such as a rooftop garden, will give our
patient families a place to relax and relieve their anxiety.
At Children’s Hospital we have big plans to grow, and we’re asking
you to be a part of it. This $75 million expansion project simply cannot
happen without your help. Your donations will be essential in making sure
we have the space to offer the specialized care our patients so deserve.
Call 865-525-GIVE or visit www.etch.com/donate to donate to the
expansion project.
Proposed sketch of new expansion project
16
It’s About Children, Issue 1 • 2014

17. Visit www.etch.com/donate to
donate to the expansion project.
Donate at www.etch.com/ItsAboutChildren
17

18. Your Dollars at Work
Hispanic radiothon generates nationwide support
Inspiring listeners from all over the country, WKZXFM 93.5, greater Knoxville’s Hispanic radio station, raised
$66,000 for Children’s Hospital during its recent three-day
radiothon.
Sharing on-air interviews with staff and patient
families, WKZX DJs Milton Pineda and Mercedes Cuevas
far surpassed the station’s fundraising goal of $50,000.
Donors from all over the country called in wanting to
support the work of Children’s Hospital.
“We couldn’t believe it,” Cuevas said. “Calls came in
from Texas, Oklahoma and all over the U.S., from people
who just wanted to help.”
At least 5 percent of our patients in fiscal year
18
2013 were Hispanic. To meet the needs of this patient
population, we offer 10 interpreters to help Spanishspeaking families. Families are generally assigned a specific
interpreter with whom they can establish a relationship.
These interpreters work with families to interpret verbal
information and translate medical forms, which helps
reduce anxiety and makes it easier for parents to make
care decisions.
In addition to interpreters being available for families
while their children are in the hospital, the Medical Office
Building now has a full-time interpreter who can help
set and cancel appointments, and coordinate care with
other doctors and specialists.
It’s About Children, Issue 1 • 2014

19. Having fun and saving lives
Since 2008, tens of thousands of game enthusiasts from
across the U.S. and beyond have gathered virtually on an
autumn Saturday to help save the lives of children.
During Extra Life, participants play console games,
tabletop role-playing games or even lawn sports and board
games to raise money for their local Children’s Miracle
Network Hospital. Gamers can play for the full 24-hour
marathon, or any hours of their choosing, and raise money
by asking for donations from friends and family.
Recently, 220 gamers who played from their homes or
the Knoxville Convention Center raised $15,000 for Children’s
Hospital—almost four times the amount raised last year.
Ellen Cole, the Children’s Miracle Network Hospitals
Program Director for Children’s Hospital, said Extra Life is a
fun way for people of all ages to support the children of their
community.
“It gives people a chance to do what they love while
making a difference in the lives of children,” she said.
Big hearts equal big donation
Employees with hearts as big as the
warehouse stores in which they work
raised $14,803 for Children’s Hospital.
Since 1988, Costco locations across the
U.S. and Canada have participated in a
month-long fundraising campaign to raise
money for Children’s Miracle Network
Hospitals like ours.
This year, employees of the Knoxville
Costco set weekly fundraising goals and
hosted special activities to meet these
goals. To keep their employees motivated,
managers of the store allowed employees
to throw pies in their faces when they
surpassed their goals.
While extra events helped raise funds,
most donations were made one dollar at
a time by selling Miracle Balloon icons at
cash registers. Organizations like Costco
and their employees play a vital role in
supporting Children’s Hospital.
Donate at www.etch.com/ItsAboutChildren
19

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