It's About Children - Issue 1 2014 by East Tennessee Children's Hospital

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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.

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It's About Children - Issue 1 2014 by East Tennessee Children's Hospital

  1. 1. 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
  2. 2. 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
  3. 3. 4 It’s About Children, Issue 1 • 2014
  4. 4. Story by E. Anderson Photos by Michael Dayah Donate at www.etch.com/ItsAboutChildren 5
  5. 5. 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
  6. 6. 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 Donate at www.etch.com/ItsAboutChildren 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
  7. 7. • • • • 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
  8. 8. ade Payne Photos by W Donate at www.etch.com/ItsAboutChildren by Audrey Madigan continued on page 10 9
  9. 9. 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
  10. 10. 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
  11. 11. 12 It’s About Children, Issue 1 • 2014
  12. 12. 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
  13. 13. 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
  14. 14. 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
  15. 15. 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
  16. 16. Visit www.etch.com/donate to donate to the expansion project. Donate at www.etch.com/ItsAboutChildren 17
  17. 17. 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
  18. 18. 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
  19. 19. NON-PROFIT ORGANIZATION U.S. POSTAGE PAID 2018 Clinch Ave. • P.O. Box 15010 Knoxville, Tennessee 37901-5010 RETURN SERVICE REQUESTED Nothing puts a smile on aNothing puts a smile on a child’s face quicker than getting a gift— child’s face quicker than getting a gift For questions about the magazine, email pparson@etch.com. If you receive a duplicate issue or need to update your address, call 865-541-8723 or email LAMadigan@etch.com. Visit www.etch.com/ ItsAboutChildren to sign up to receive this magazine electronically. PERMIT 433 KNOXVILLE, TN

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