It's About Children - Issue 3 2014 by East Tennessee Children's Hospital

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A Sweetwater family faces the challenges of a painful, potentially life-threatening disease.

See how Joseph Peeden, M.D., solved one of our medical mysteries.

Brittany Overton is alive today thanks to an automated external defibrillator -- and school staff trained to use it.

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It's About Children - Issue 3 2014 by East Tennessee Children's Hospital

  1. 1. 30 25 Children’s Hospital license plate If you were one of the first 1,000 people to reserve a license plate or you’d like to get one, visit your local county clerk’s office to pick up your plate. Little Critter merchandise Kohl’s department stores Books, plush toys and other gifts are $5 each. Visit www.kohls.com for more information. All net profits from local stores will help fund our helmet safety program. Extra Life—a 24-hour game marathon Mark Your Calendar FLETCH Savings Card OCT. NOW Through SEP. NOW Starts at 8 a.m. In your own home Free to sign up. Ask your friends to sponsor you. Visit www.extra-life.org to register. Open to everybody— from hardcore gamers to Candy Crushers and role-playing adventurers. All local proceeds help provide training and purchase medical equipment for the hospital. Get the card by making a $40 donation to Children’s Hospital. Visit www.etch.com/FLETCH SavingsCard to find out how to get your card. Use it to save 20 percent at select retail stores and restaurants between Oct. 24 and Nov. 2. Your donation helps provide medical equipment for the hospital. 2 It’s About Children, Issue 3 • 2014
  2. 2. Spotlight 4 9 12 18 Courageous Colemans A Sweetwater family faces the challenges of a painful, potentially life-threatening disease. The smile saver See how Joseph Peeden, M.D., solved one of our medical mysteries. Shock factor Brittany Overton is alive today thanks to an automated external defibrillator—and school staff trained to use it. Safer scans for children Our new CT scanner reduces exposure to radiation by up to 70 percent. Connect with us: 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 NOV. 8 13 DEC. 5 Safe Sitter class for children ages 11 to 14 9 a.m. to 3 p.m. Children’s Hospital’s Koppel Plaza Building (Meschendorf Conference Room) Class costs $25. Call 865-541-8165 to register. Learn correct babysitting techniques, emergency responses and how to use babysitting as a business. MEDIC blood drive DEC. 7 a.m. to 4 p.m. Children’s Hospital’s Koppel Plaza Building (Meschendorf Conference Room) It’s free. Call 865-541-8165 for more information. All blood used at Children’s Hospital is provided through MEDIC. One donation can help up to three people. Donors must be at least 17 years old, weigh more than 110 pounds and have an ID. Donate at www.etch.com/ItsAboutChildren 3
  3. 3. Story by E. Anderson Photos by Michael Dayah continued on page 6 4 It’s About Children, Issue 3 • 2014
  4. 4. Donate at www.etch.com/ItsAboutChildren 5
  5. 5. “I noticed he’d gone back to crawling—he’d stopped walking,” Connis said. “I unzipped his onesie, and his foot was swollen. I knew what to look for, so I knew he had to go to the hospital.” That was the first of many trips to East Tennessee Children’s Hospital for Jonavin. His sickle cell disease led to several bouts of pneumonia and pain crises in his first year. “We take him to Children’s Hospital, and they give him pain medicine and fluids,” Connis said. “It’s been a rough road for him. I’ve lost count of how many transfusions he’s had.” As a mother, the pain crises are the hardest, Connis said. “He’s in pain, and he’ll just start screaming and saying, ‘I’m hurting. I’m hurting,’” she said. “It’s really difficult to watch him go through that when there’s nothing I can do.” A one-in-four chance Three years after Jonavin was born, Connis gave birth to Juliana. The Colemans were thrilled to discover their daughter didn’t have the disease, but was only a carrier of the sickle cell gene. A few years later, Jenayah was born. Connis and Willie knew there was a one-in-four chance she’d have sickle cell disease, but were hopeful because her sister was spared. They were devastated when Jenayah was diagnosed with the disease at 2 weeks old. “That one hit us hard,” Connis said. But unlike Jonavin’s constant visits to Children’s Hospital, Jenayah’s sickle cell disease seemed to be under control. That continued from page 4 He’s just 11 years old, but Jonavin Coleman already has a plan for his life: Play football. Go to college. Become a professional athlete. His 5-year-old sister, Jenayah, also has dreams—to combine her fiery personality with a set of pom-poms and a megaphone as she cheers for her brother and his future teammates. But Jonavin and Jenayah’s mom, Connis, has her own wish—a cure for the painful, life-threatening disease that may keep her children on the sidelines. The first diagnosis Jonavin was just a month old when his newborn screening confirmed he had sickle cell disease. Connis and her husband, Willie, were overwhelmed. “I was upset. I was crying. I went on the Internet and read about sickle cell disease,” she said. “My husband has a cousin who has kids with it, but other than that, we knew nothing about it.” Sickle cell disease is an inherited blood disorder in which the red blood cells are abnormally shaped. Instead of their normal round shape, the cells are shaped like sickles, which can result in serious infections, chronic anemia, damage to organs and extremely painful episodes—often referred to as pain crises. Jonavin was an active baby. He surprised his parents when he pulled himself out of his crib at 4 months old and was walking at just 9 months old. That’s when he had his first pain crisis. 6 It’s About Children, Issue 3 • 2014
  6. 6. all changed when she was 4. “She’d been in preschool all day and was fine. I picked her up, and she was fine when we got home,” Connis said. “Then she came up to me and said, ‘Mama, I want …’ and just started babbling. I couldn’t understand what she was saying, and I thought she was trying to be funny.” Connis realized quickly it was no laughing matter. Jenayah’s tongue was rolling in her mouth, which was twitching uncontrollably. The Colemans rushed Jenayah to their local hospital in Sweetwater, Tenn., where doctors told them Jenayah had had a seizure. When anti-seizure medications didn’t alleviate the mouth twitching, Jenayah was transported by ambulance to Children’s Hospital, where doctors confirmed Connis and Willie’s worst fear. Their 4-year-old daughter had had a stroke. “We knew that strokes were a possibility, but Jenayah was doing fine. It was Jonavin who was having all the crises, so this was really unexpected,” Willie said. In good hands Connis describes the staff at Children’s Hospital as invaluable to her. “It was scary to watch Jenayah’s stroke, but I knew she was in good hands. The doctors and nurses were really good about keeping me calm,” she said. “If they have to be in the hospital, I’d rather they be at Children’s Hospital than anywhere else.” Jenayah has since recovered, but will need a blood and marrow transplant. They’re currently trying to find a matching bone marrow donor. In the meantime, Jenayah goes to Children’s Hospital for monthly exchange transfusions, during which her blood is removed and replaced with donor blood. And Jonavin goes to Children’s Hospital every other month for testing and regularly to treat his pain crises. “There have been a couple of times we’ve had to get a double room because they were both admitted,” Connis said. “But they’re always so sweet at Children’s Hospital. The kids love it there.” For Connis, the hardest part of watching her children battle sickle cell disease is the worrying. “I’m on edge all the time. I feel like I can’t enjoy the happy things because I’m always afraid the other shoe will drop. I worry that Jenayah will have another stroke or Jonavin will have another pain crisis,” she said. “It’s hard to enjoy life.” Still, both she and Willie are grateful for the support of the Children’s Hospital staff, who’ve gotten to know the Colemans well. “They’ve done a great job with the kids,” Willie said. “They’ve become like a second family to us.” continued on page 8 Donate at www.etch.com/ItsAboutChildren 7
  7. 7. 8 What is it? Key points: Sickle cell disease Sickle cell disease is an inherited blood disorder in which the body makes sickle-shaped red blood cells instead of normally round cells. Because those cells aren’t smooth, they become stuck in the body, leading to extremely painful episodes. Symptoms can range from mild to severe, including infections, swelling of the hands and feet and strokes. Who gets sickle cell disease? It affects 90,000 to 100,000 Americans. It especially affects the African-American population—occurring in one of every 500 births. Is there a cure? A blood and marrow transplant is the only known cure for sickle cell disease, but it can be risky, especially for young children. Most patients with sickle cell disease manage their symptoms with regular fluids, pain medication and transfusions. How red blood cells move through blood vessels Normal red blood cells Sickle-shaped red blood cells It’s About Children, Issue 3 • 2014
  8. 8. Joseph Peeden, M.D., solves medical mysteries. “It’s not like on television, where the ants in the Story by Cassidy Duckett Photos by Michael Dayah walls are the cause of the problem. It’s boring and a lot of hard work,” he said. “But it’s important because at the end of the day you get to help the child.” continued on page 10 Donate at www.etch.com/ItsAboutChildren 9
  9. 9. It wasn’t. Jordan could no longer open her mouth wide enough to fit more than one french fry inside. The middle school cheerleader and pageant winner was losing her smile. “It got worse and worse,” Sheri said. An explanation Throughout her life, Jordan has become familiar with trips to the hospital. She has an autoimmune disease and a thyroid disease in addition to her arthritis. When she was in fourth grade, Dr. Peeden discovered a cyst in the center of her brain. “She’s been through so much and always does it with a smile,” Sheri said. “It was incredibly painful to watch her lose that.” But Jordan knew she could rely on Dr. Peeden. “She’s so confident in him, so she never seemed worried. She said, ‘Don’t worry, Mom. I trust him. He’ll figure it out,’” Sheri said. Dr. Peeden quickly discovered that Jordan’s jaw joint— the mandibular condyle—had completely disintegrated due to her rheumatoid arthritis. He’d only seen one other child who had the same symptoms since he became a doctor in 1975. “It’s a common diagnosis, but Jordan had a rare manifestation,” he said. As the leader of the Diagnostic Clinic at East Tennessee Children’s Hospital, Dr. Peeden takes a second look at complex cases that seem to have no clear answer. He works with SuAnne Cobb, care coordinator, and Meghan Buckner, social worker, to agree on a unifying diagnosis. If the small team can’t determine a solution, they find someone who can. For 14-year-old Jordan Henegar, Dr. Peeden’s persistence resulted in more than a diagnosis. “He was able to save her smile,” said Sheri Henegar, Jordan’s mother. Literally. The discovery “One morning I was fixing Jordan’s hair for school when I heard her jaw pop back into place,” Sheri said. The right side of her daughter’s face was drooping downward. Her smile was crooked. “Jordan said, ‘It happens all the time, Mom. I just pop it back in.’” Sheri realized that Jordan hadn’t been eating her favorite foods, but instead requesting soft meals like soup and mashed potatoes. “I started self-restricting my diet,” Jordan said. She’d been diagnosed with juvenile rheumatoid arthritis as an infant. “I figured it was just another flare-up.” 10 It’s About Children, Issue 3 • 2014
  10. 10. Sheri cites Dr. Peeden as the difference in Jordan’s life. “He’s brilliant,” she said. “I don’t have any doubt that Jordan would be in a wheelchair now if it weren’t for Dr. Peeden. He doesn’t just get patients treated, he wants them to have a high quality of life.” As the mother of a child who frequently comes to the hospital, Sheri finds solace in Dr. Peeden’s unfailing focus on finding an answer. “Once he’s involved, you feel like he’s moving as quickly as he can to get the right treatments for your child—like it’s his priority in life,” she said. “I can’t imagine going through this without someone you trust like I trust Dr. Peeden. How wonderful to have that in our backyard.” Visit www.etch.com/ ItsAboutChildren to experience Jordan Henegar’s journey. A solution After her appointment with Dr. Peeden, Jordan’s life quickly changed. The bow tie-wearing doctor searched the country for a treatment and discovered gel injections being tested at Cincinnati Children’s Hospital Medical Center. “He immediately called Hermine Brunner, M.D., and cashed in his favor, as he likes to say,” Jordan said with a laugh. The Oak Ridge teen traveled to Ohio for the treatment, which was injected into all of her joints including her jaw. “They say it’s more intense than brain surgery,” Jordan said. “You have to hit 1 millimeter of space with the gel or the muscle stops responding.” A happy ending A week later, Jordan could cheer and eat her favorite food, steak, again. She has returned to Ohio one time since 2011 for another round of injections. The honor roll student doesn’t take her success for granted. She said, “I wasn’t supposed to be able to walk when I was little, but now I can cheer and do anything I want to do.” Donate at www.etch.com/ItsAboutChildren 11
  11. 11. Story by Cassidy Duckett Photos by Michael Dayah Brittany Overton (center) with April and Travis Freeman—two of the Anderson County High School staff members who helped save the teen’s life 12 It’s About Children, Issue 3 • 2014
  12. 12. Anderson County educators save student’s life with AED Brittany Overton had been at school for about 15 minutes on Jan. 14, 2014. The Anderson County High School freshman was chatting with a friend when she suddenly fell to the ground in the courtyard. Her classmates, teachers and family didn’t know it then, but Brittany’s heart was in cardiac arrest. “My heart went into an irregular beat,” Brittany said. “I wasn’t getting enough blood into my brain.” Luckily, staff members at her school had been trained to use an automated external defibrillator (AED)—two of them hung on the walls around the school at the time. Travis Freeman, an assistant principal, was close to Brittany and did CPR with other school staff until Ben Downs, another assistant principal, retrieved an AED from a school hallway. Freeman’s wife, April, who’s a registered nurse and teacher at the school, gave Brittany two shocks with the machine. Her pulse returned. Because Brittany hit her head when she fell, she was transported to the University of Tennessee Medical Center’s Emergency and Trauma Center. After an initial examination, Brittany was brought to the Pediatric Intensive Care Unit (PICU) at East Tennessee Children’s Hospital for five days. “I was in complete shock at the hospital,” said Kim Smith, Brittany’s mother. “Everybody in the PICU was great and explained everything that was going on every day. It was so nice to know what to expect.” Brittany was diagnosed with Long QT syndrome. It caused her heart to go into ventricular fibrillation, which is an irregular heartbeat. Though she’d passed out two other times in her life, she didn’t have any warning signs or other health problems. continued on page 14 Donate at www.etch.com/ItsAboutChildren 13
  13. 13. for these vital machines. Toward the end of the 2013-2014 school year, a group at her school created a video project that included Brittany’s story to apply for an additional AED. They won, and a third lifesaving machine now sits on the sprawling Anderson County High School campus. During her time in the PICU, Brittany was given a defibrillator that monitors her heart rhythm and gives her an automatic shock if it becomes abnormal. Other than going to her six-month checkups with Dr. Sharma, the 15-year-old has settled back into normal school days. She hopes to take a class during her junior year that will allow her to ride along with emergency medical technicians. “I’ve always wanted to be a first responder,” she said. In May, Brittany’s heart rate jumped beyond 200 beats per minute while she was shooting hoops in the driveway. “Her defibrillator shocked her, so we took her to the Emergency Department at Children’s Hospital,” Kim said. “The cardiologist on call had beat us there and already gotten us a room, so when we arrived they brought us right to him where everyone was ready and waiting. They were wonderful.” To increase awareness about sudden cardiac arrest in children and improve school staff’s ability to respond to it, Children’s Hospital has offered the Project ADAM Tennessee program since 2011. The initiative places automated external defibrillators (AEDs) in local schools, helps train and coordinate staff to prepare for emergencies and provides information about emergency best practices. Schools that participate in Project ADAM Tennessee are offered support at no cost and are considered heart-safe upon completion of training. Since 2011, Children’s Hospital has placed AEDs in more than 80 schools, with more on the way. Visit www.etch.com/ItsAboutChildren to see if your child’s school is heart-safe. continued from page 13 “She was just feeling normal at school on a normal day,” said Sumeet Sharma, M.D., Brittany’s pediatric cardiologist at Children’s Hospital. “For most people, their first episode is their last. She’s lucky her school had an AED and the staff was trained to use it.” “AEDs are most often used in schools during physical activity—on the playground or during a game or field day— but cardiac arrest can happen any time as in Brittany’s case,” said Karen Smith, Project ADAM Tennessee coordinator at Children’s Hospital. “Up to 25 percent of our population is in school on a regular day, so having this lifesaving equipment available is a very wise investment.” Staff members who are trained and not afraid to use an AED in emergency situations are essential to saving the lives of children in school. Nationally, 70 percent of people feel helpless to act in an emergency like Brittany’s due to lack of training. However, when staff members are trained, their intervention significantly increases the chance of survival. Though Brittany didn’t think much about the AEDs hanging on her school’s walls before, her experience has spread awareness among her fellow students about the need 14 It’s About Children, Issue 3 • 2014
  14. 14. Every day, between one and three children or teens suffer sudden cardiac arrest in the United States. In cases like Brittany’s, having an automated external defibrillator (AED) and trained staff in school means the difference between life and death. The portable, lightweight device can deliver an electric shock to the heart to return it to normal rhythm if delivered within three to five minutes of the emergency. By having an AED on site and knowing how to use it, school staff may increase a child’s chance of surviving sudden cardiac arrest by 30 percent. Otherwise, students would have to wait for emergency personnel to arrive. Every minute that passes means a 10 percent drop in survival rates. Because sudden cardiac arrest can occur in children and teens with no history of heart conditions and no warning signs, training staff to use an AED anytime, anywhere in the school is essential. Staff members are given specific roles when an AED is in use, including crowd control, coordinating emergency personnel, providing CPR and using the AED. Not all schools are equipped with an AED or have staff trained to use it. Children’s Hospital places AEDs, trains staff and establishes emergency plans in local schools through the Project ADAM Tennessee program. Ben Downs, an assistant principal, who retrieved the AED used to save Brittany Overton’s life 1. Electrodes, or sticky pads, are put on the chest of the person who’s having sudden cardiac arrest. 2. The automated external defibrillator (AED) sends information about the person’s heart rhythm to a computer in the AED to determine if a shock is needed. 3. If the person’s heartbeat is irregular and a shock is needed, the AED will charge its internal capacitor to give a shock. 4. An automated voice tells the user when to give a shock. 5. The shock hopefully restores normal heart rhythm to the patient. Donate at www.etch.com/ItsAboutChildren 15
  15. 15. 16 It’s About Children, Issue 3 • 2014
  16. 16. His career-making touchdown wouldn’t be possible without your life-changing donation. Every dollar you give to East Tennessee Children’s Hospital helps save a life. Help expand our services to include a new surgery center, a new 44-bed Neonatal Intensive Care Unit and more space to treat children with chronic conditions. Visit www.etch.com/expansion or call 865-525-GIVE to donate or learn more about the $75 million expansion. Donate at www.etch.com/ItsAboutChildren 17
  17. 17. Safer scans for children News Children’s Hospital is now using a new computed tomography (CT) scanner that cuts exposure to radiation by up to 70 percent. It not only increases your child’s safety, but it also decreases time spent at the hospital. The Toshiba Aquilion PRIME 80 scanner uses special software to determine the lowest possible radiation dose while maintaining image quality. This software allows each scan to be tailored to each child. In addition to safer scans, the new CT scanner is 20 percent faster than the previous scanner. Because the machine has a wider scanning area, scans are completed quicker and there is a decreased chance of patient motion. The increased speed in scanning may reduce the need for sedation, which involves medicine that relaxes children during medical procedures that may be stressful, painful or require a child to hold still. “For our patients and their families, this groundbreaking technology means a quicker and safer trip to the hospital, with the same high-quality test results,” said Barry Payne, radiology manager at Children’s Hospital. 18 It’s About Children, Issue 3 • 2014
  18. 18. At the Knoxville spring Color Me Rad 5K, the most enthusiastic participants weren’t all seasoned athletes or experienced runners. According to 2-year-old Grayer Morgan’s parents, the 3-foot-tall tyke stole the show. “He did the whole race,” said Misty Morgan, Grayer’s mother. “Then afterward he was dancing and wanted to be close to the stage so he could hear the music. He loved it.” For the Morgan family, the colorful race was more than a test of endurance. They gathered a team of family and friends to raise money for Children’s Hospital, which the race benefits and where Grayer is treated for acute lymphoblastic leukemia. “We spread the word and told everyone that if you’re going to run a race, this should be the one,” she said. Thanks to donors like you, the spring event raised $15,074 for Children’s Hospital and splattered thousands of runners—including Grayer—in bright pink, purple, yellow, orange and blue. Your Dollars at Work Rad race Donate at www.etch.com/ItsAboutChildren 19
  19. 19. Your Dollars at Work Cruising for a cause With engines roaring and revving, the Good Fellas motorcycle group blazed down East Tennessee’s roads this summer to raise money for Children’s Hospital. The Maryville-based club created T-shirts featuring artwork by two hospital patients for the ride. The event raised $695, which will be allotted toward Children’s Hospital’s most immediate need. Sponsors included Buffalo Wild Wings Café, Cruzes Tint and Tune, Bi-Lo Markets and Gary Underwood Construction. Saying “I do” to giving Newlyweds Lindsey Crosnoe-Shipley and Adam Shipley didn’t revel in registering for new dishes and silverware during their engagement. Instead, they chose to forego traditional wedding gifts altogether. Guests invited to their May nuptials and reception were encouraged to make a donation to East Tennessee Children’s Hospital. Adam and Lindsey raised $885 for Children’s Hospital, which will help provide social work-related services for patients and their families. Lindsey is a medical student at Quillen College of Medicine in Johnson City, Tenn., and Adam works for the U.S. government in Washington, D.C. 20 It’s About Children, Issue 3 • 2014
  20. 20. Hitting the jackpot After selling a winning Tennessee Lottery ticket worth $259.8 million, the Kroger at 6702 Clinton Highway received $25,000 of the winnings—and gave it all away. Children’s Hospital was one of five local causes to receive $5,000 from the Kroger. The donation will be used toward the purchase of much-needed medical equipment for the hospital. Kroger was the first Tennessee Lottery retail winner to give all of its winnings to charity. Kroger has long been a supporter of Children’s Hospital and has raised thousands of dollars for it through the Children’s Miracle Network Hospitals. Pey-ing it fore-ward Fox Den Country Club was packed with more than 230 golfers and one NFL quarterback this June to raise money for Children’s Hospital and the PeyBack Foundation. Thanks to participants like you, the 17th annual Peyton Manning Golf Classic raised more than $165,000 that will be split between the two causes. Children’s Hospital will use its half to purchase much-needed equipment to safely lift and transport patients, high-tech infant monitors and special machines to keep newborns warm. In between swings, the golfers visited with Manning, who’s the quarterback for the Denver Broncos. All of the money raised for PeyBack, Peyton’s own foundation, will be used for causes in our region, including leadership programs and opportunities for disadvantaged youth. Gold sponsors of the tournament were Cellular Sales, Knoxville News Sentinel and Republic Plastics Ltd. Donate at www.etch.com/ItsAboutChildren 21
  21. 21. Enjoy something for the entire family—from designer trees and holiday gift shops to children’s activities and live entertainment. Wednesday, Nov. 26, to Sunday, Nov. 30, at the Knoxville Convention Center 30th anniversary ticket prices: $8 for adults; $4 for children ages 4 to 12; free for children age 3 and younger; $20 for a family four-pack (online only) Buy tickets at www.fantasyoftrees.org or at the door. Proceeds go toward the purchase of medical equipment at East Tennessee Children’s Hospital. 22 It’s About Children, Issue 3 • 2014
  22. 22. Donate at www.etch.com/ItsAboutChildren 23
  23. 23. 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 Get useful news and information about your child’s health. 2018 Clinch Ave. • P.O. Box 15010 Knoxville, Tennessee 37901-5010 RETURN SERVICE REQUESTED 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. NON-PROFIT ORGANIZATION U.S. POSTAGE P A I D PERMIT 433 KNOXVILLE, TN Visit www.etch.com/ItsAboutChildren to sign up for our free e-newsletter.

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