Pg. 7-8, Cover Story: Life Support Pg. 3-4
Personalized Medicine How seeking better cancer treatments helps a Riley oncologist find personal balance Pg. 5-6
Meet a child whose life was changed by this high-tech tool Pg. 11-12
Voices of Riley A chance encounter in a Riley hallway teaches unforgettable lessons Pg. 13
Replay A boy with a rough start seizes his second chance
Why We Give Second-cousins whose lives were saved at Riley inspire a generous gift
We welcome your story suggestions. email ideas to g Please firstname.lastname@example.org.
Alexis Ellenberger Portage
Sleeping Beauty When 5-year-old Alexis Ellenberger sleeps, her soft snoring is music to her mother’s ears. The rattling noises that Alexis made as an infant were so loud that Robin Dickens recorded them to convince local doctors that something
Alexis recovering from surgery at Riley Hospital in 2008
was wrong. But it wasn’t until she brought Alexis to Riley Hospital for Children at IU Health that she felt her concerns were addressed as the first in a series of serious medical conditions was
“They saved her life.” -Robin Dickens
discovered. Robin first insisted that she and Alexis’ father Jack bring their daughter to the Riley Emergency Department when she was 1 month old. Although Chicago was closer to the couple’s home in Portage, Ind., and they didn’t have a referral, “I just knew it was the best hospital,” Robin says. “The doctors there listened and did something about it,” she adds. The first night Alexis underwent a sleep study in Indiana’s only pediatric sleep clinic. The Sleep Disorders Center at Riley evaluates children and youth of all ages, from premature newborns to 18-year-olds. Her sleep study and additional testing helped doctors to diagnose severe obstructive sleep apnea and conditions that caused Alexis’ airway to collapse every time she inhaled. Emergency surgery followed on April 2; the family went home a few days later. When Alexis developed other problems, her parents returned to Riley, where her multiple, complex medical issues tapped the expertise of other specialties, including: pulmonology; otolaryngology (ear, nose and throat); developmental pediatrics; orthopedics; and gastroenterology. An MRI in February 2009 showed that Alexis had PVL, a type of brain injury that affects infants. That led doctors to recommend genetic testing, which revealed a disorder called chromosome 5 duplication.
“They did so many different tests on her to find out the cause of things,” Robin says. “They saved her life.” Today, Alexis calls the scar on her abdomen (from a feeding tube inserted at six months) her “warrior wound” and vies to do everything her 10-year-old sister Callie does. She doesn’t like being separated from her parents, but Robin says her “wild, smart and funny” daughter is already excited to start kindergarten in August.
RILEY SLEEP CENTER As Indiana’s only Pediatric Sleep Disorders Center, Riley has a comprehensive team of specialists available including: pediatric pulmonologists; behavioral pediatricians; neurologists; psychiatrists; pediatric otolaryngologists; pediatric plastic surgeons; pediatric urologists; and a specialist in dysmorphology and developmental pediatrics.
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It’s a privilege to come to work to think of how to make things better for children.” - Jamie Renbarger, M.D.
Jamie Renbarger, M.D., arrives home from work in the evening tired but happy to see her husband and daughters. Just a few hours earlier, the pediatric oncologist was at the bedside of 3-year-old Kelly Garcia-Leocadio, who received a stem cell transplant at Riley Hospital for Children at IU Health during her fight against Hodgkins lymphoma. “You want to play a game, don’t you?” Dr. Renbarger asked softly, in fluent Spanish, as she smiled into the little girl’s somber face. “She looks really good today,” she reassured Kelly’s mother, with a calming and composed demeanor. The challenges of working with difficult-to-treat pediatric cancers
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don’t seem to deplete Dr. Renbarger — instead her work keeps her centered. “Right after I came back from maternity leave from my first child, I was taking care of a girl who was born on the same day as my daughter,” recalls Dr. Renbarger. Sadly, that child did not survive her battle with acute myeloid leukemia. “That hit way too close to home. I know we want to enjoy every day. I don’t want to miss out.”
In the genes: creative science Dr. Renbarger considered a career in music, but she discovered creativity could also be applied to science and pursued medicine. She joined Riley in 2002 and found her niche in cancer
research. She received the Presidential Early Career Award for Scientists and Engineers in 2011. Dr. Renbarger now sees Riley Hospital cancer patients and conducts pediatric research for Riley through the Indiana Institute for Personalized Medicine. She says her creative side loves the challenge of seeking patterns and putting information puzzles together, and her practical side likes the promise of concrete results: “What I do is very practical. I can easily see the clinical application. It’s easier for me to get excited about what I do because it seems so practical and relevant.” Her current work aims to figure out the perfect balance of chemotherapy drugs for each patient based on his or her genetic makeup. If the child’s genes are programmed to metabolize a chemotherapy drug quickly, the child may have fewer side effects, but the drug won’t work as well. If a patient
National Pediatric Research Leader Riley Hospital for Children at IU Health is one of the nation’s leading pediatric research hospitals, with teams of scientific investigators researching: cancer; diabetes; heart defects; and asthma. To learn more about the pediatric research supported by gifts to Riley Children’s Foundation, visit: wellscenter.iupui.edu Three-year-old Kelly Garcia-Leocadio, Indianapolis, with Riley oncologist Jamie Renbarger, M.D.
Dr. Renbarger at home with daughters Grace and Clare, and husband Andy
metabolizes slowly, the drugs may create permanent, disabling sideeffects such as low blood counts, nerve damage or cognitive impairment. IU Pediatrics Chairman Wade Clapp, M.D., says Dr. Renbarger is leading her department in this research area. “Her work helps make certain that patients receive the right dose of drug and at the correct interval to kill the cancer and also ensure that the patient doesn’t develop long-term complications,” says Dr. Clapp. This work is also just one example of how Riley Hospital is embracing the exploding field of genome-therapy. “I would say in the next 10 years we’re going to be sequencing everybody,”
says Dr. Renbarger. “And we are one of a few centers in the country that is positioned to use that information to improve how we take care of patients. It’s a really exciting time to be here.”
Seeking balance On a scientific level, Dr. Renbarger’s pediatric cancer research is about balancing medicine’s positive and negative effects. On a human level, it’s about balancing challenges with hope. After a week spent on the stem cell transplant floor helping children like Kelly fight uphill battles, she can return to the lab and search for ways to improve their outcomes. “It provides a good emotional
balance,” Dr. Renbarger explains. “I’m looking beyond just the acute events into how we can make their lives better. It’s a privilege to come to work to think of how to make things better for children.” On a personal level, research has helped Dr. Renbarger balance work and family. For all the time and energy she pours into her long, packed workdays (“I’m about 10 minutes late to every meeting!” she confesses), she says research offers important scheduling flexibility. “I work really hard, but this gives me the power to organize how I do it,” she explains. “I take the kids to school about half the time and my husband, Andy, takes them half the time. On days that I’m not taking them to school, I start work at 5:30 or 6 a.m.” And, each night, after a long day searching for better ways to treat pediatric cancer, Dr. Renbarger has dinner with her family. Even if the meal comes at a late hour, it is a tradition she insists upon, and one she treasures. It’s her way of making good on that promise to herself inspired by cancer’s tragedies: enjoy every day.
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Reaching into the Future:
A Robot Revolutionizes Surgery “It was a win-win for our hospital, our program and the kids.” - Mark Cain, M.D.
ercedes Magaña is not only a Riley kid; she is part of Riley history. This winter the 5-year-old from Washington, Ind., was the first child to undergo surgery with the da Vinci robot in a Riley Hospital for Children at IU Health surgery suite. Mercedes suffered from kidney reflux which required surgery. Riley Pediatric Urologist Ben Whittam, M.D., recommended using the da Vinci robot. “She had urine that backed up into her kidney that over a long time can cause kidney scarring and hypertension,” says Dr. Whittam. “Her surgery (ureteral reimplantation) was one of the newer therapies available with the robot.” Riley surgeons have used the da Vinci surgical system on children in the past. But those young patients, along with Riley staff, had to travel through tunnels to IU Health University Hospital for the procedure. This time, the 2,220– pound robot came to them. “Things went amazingly. We brought the robot over through the tunnels with the help of clinical engineering,” explains Dr. Whittam. “Our operating room is already dedicated and designed to work for children. In keeping the patients here, I think we provide a better level of care and comfort for both the family and the child. I like to say we get the home court advantage.” Amanda Magaña, Mercedes’ mother, couldn’t agree more. “It’s always scary when your child has surgery, but it eased my mind knowing we didn’t have to move her to another hospital,” she said. Other advantages of the robot surgery include a shorter recovery time and minimal scarring. Mercedes’ playful and energetic personality barely skipped a beat. “Mercedes was able to get back to her regular activities in two weeks,” said Magaña. “She feels much better and her incision is barely visible. We couldn’t be happier.” The da Vinci robot is now being brought to Riley once a month, helping urologists tackle complex cases in even the youngest of patients. “Riley has one of the busiest surgical urology practices in the country. The robot needed
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Riley urologist Ben Whittam, M.D., (above) performed the first da Vinci robot surgeries at Riley Hospital for Children. The robot allows surgeons to perform delicate procedures through incisions smaller than than the width of a dime.
to be more accessible to move our program forward,” says Riley’s Chief of Urology, Mark Cain, M.D., whose team handles 2,800 surgeries and 13,000 outpatient visits per year. Dr. Cain and his colleagues also travel to see patients in 15 satellite clinics across the state. “Bringing the robot to Riley is a great thing for the kids,” says Dr. Cain. “It was a win-win for the hospital, our program and the kids.”
Photo by: Meghan Hochgesang
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Trauma to Thankfulness “Mrs. Peterson, we got in an accident.” The phone call came from the babysitter who was driving three of Becky and John Peterson’s four children to a basketball game in Carmel while the couple attended an event in downtown Indianapolis. Picturing a fender-bender, Becky asked if everyone was okay. She wasn’t prepared for the answer: “I don’t know.” First responders began treating Charlie, Kate and Gabriel and preparing to take them to the nearest hospital. But within minutes, a firefighter called Becky with a change in plans. “He told me, ‘Due to the severity of the injuries for your youngest child, Gabriel, we’re coming to Riley,’” recalls Becky. “And I fell on my knees. Our friends got down with us and started praying.” The Petersons knew that Riley Hospital for Children at IU Health is the place children go when their injuries are serious: It’s Indiana’s only Level I Pediatric Trauma Center. The couple arrived before the ambulance and saw their 5-year-old, Gabriel, being rushed through the doors. Riley chaplain Rev. Anastasia Holman brought the Petersons and a social worker into a small, private room and prayed with them. “What I wanted to do was walk with them on their journey of fear,” 7 l RileyKids.org l Riley Messenger
Rev. Holman recalls. “I was just trying to give them comfort, answer their questions, surround them with love and comfort and peace.”
Making the best of the worst What the Petersons experienced inside that small room was just one component of a carefully coordinated trauma plan. When a Level I trauma occurs at Riley Hospital, a page goes out to the entire trauma team which includes: a pediatric trauma surgeon; an Intensive Care Unit physician and charge nurse; a chaplain; a social worker; a Child Life specialist; a respiratory therapist; and a radiologist. “When families are in distress, they are not at their best, so having that support for them emotionally helps
“They made such an effort to keep the kids together. We will always be grateful for that.” – Becky Peterson
Charlie, Kate and Gabriel Peterson of Indianapolis today, and in December, 2011 (below).
those weeks are now blurry memories punctuated by unforgettable moments: neurosurgeon Laurie Ackerman, M.D., ordering them to get some sleep and lean on their family and friends; Ronald McDonald House volunteers serving them a spaghetti dinner after nearly 30 sleepless hours; a staff member named “Miss Ruby” stroking Gabriel’s hair and reassuring them that they were going to “get their baby back”; a physical therapist coaxing Gabriel to walk; and Riley School Program teacher Lindsay Waymouth working patiently with flash cards to help him think like a kindergartener again. “The care we got from all the staff and volunteers was amazing,” says Becky. “They went so far above and beyond. They truly care.”
the trauma team do their job,” explains Riley Emergency Department Manager Terry Stigdon, R.N., whose team handled more than 34,000 patient visits last year. “If you stood back and watched, you’d be in awe. Everyone has the same goal — to provide the best experience in the worst circumstances.”
Keeping it together Becky and John Peterson left the quiet room with Rev. Holman and came back into the ER as the ambulance carrying Charlie and Kate arrived. Becky shudders remembering how frightened her children were. Charlie, age 10, was in terrible pain with a broken arm and collarbone. Seven-year-old Kate’s face was cov-
ered in blood due to a large cut that required more than 100 stitches. But Gabriel’s condition was the most critical. He had a traumatic brain injury and was placed on a ventilator. It was a long, terrifying night. But once Gabriel was removed from the ventilator and began breathing on his own, the Petersons began to feel hope and relief. The Riley staff made arrangements for the children to have side-by-side rooms in the Simon Family Tower during their recovery. “They made such an effort to keep the kids together,” says Becky. “We will always be grateful for that.”
More than medical care Gabriel spent three weeks recovering at Riley. For the Petersons,
More than a year later, Gabriel is an energetic first-grader who loves Legos and sports and is clearly adored by his siblings. His only lingering issues involve impulsivity, which is common with brain trauma. Kate’s scar is nearly invisible and Charlie is completely healed. After all they received from Riley, the Petersons say it’s their turn to give back. For Christmas, their extended family gave to Riley in Gabriel’s honor instead of exchanging gifts. “I hate that the accident happened the way it did, but we are so blessed,” says Becky. “We are so thankful for everyone and what they did for us.”
Did you know? Riley’s new emergency department, scheduled to open in the Simon Family Tower this summer, will include adjoining rooms to allow for easier management of siblings involved in a trauma.
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In the News Parents Magazine Ranks Riley Hospital Among the Nation’s Top Children’s Hospitals Riley Hospital for Children at Indiana University Health is the only children’s hospital in Indiana ranked by Parents magazine. The magazine ranked Riley 11th nationally and extended particular recognition to two pediatric specialty areas: neonatal care, which ranked 4th in the nation, and pulmonary care, which ranked 7th. To create the rankings for overall quality and specialty care, Parents considered everything from family-friendliness of facilities to treatment success and groundbreaking research in key areas. In addition to this recognition by Parents magazine, Riley at IU Health has been nationally recognized by U.S. News & World Report, ranked in 10 out of 10 pediatric specialties in the publication’s 2012-2013 edition of Best Children’s Hospitals. “We are proud to be honored by Parents magazine,” said Dr. Jeff Sperring, president and CEO of Riley at IU Health. “This type of outside recognition earned by our hospital and our neonatal and pulmonary care teams speaks to the deep commitment of our physicians, nurses, researchers and staff to providing the highest level of care to the children and families that we serve every day.”
OF NOTE • g • g
Riley Hospital for Children was renewed as Indiana’s only Level I Pediatric Trauma Center in January.
Fraternal Order of Eagles raised more than $300,000 to purchase a new pediatric mobile intensive care unit for the Lifeline fleet.
A Vermont teen became the first pediatric patient to receive an abdominal wall transplant in Indiana. The IU Health transplant team performed the groundbreaking surgery at Riley Hospital on 17-year-old Mariah Bowman, whose rare disorder left her unable to eat for nearly four years. With her intestines also replaced, Mariah is now able to enjoy food again.
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Mervin C. Yoder, Jr., M.D., the director of the Wells Center for Pediatric Research (which houses Riley’s research programs), has been awarded the rank of distinguished professor, the most prestigious academic appointment Indiana University can bestow upon a faculty member.
Rev up your motorcycle for the 20th anniversary of Miracle Ride May 31-June 2. Join 6,000 Riley supporters for a full weekend of activities including a lap around Indianapolis Motor Speedway.
America’s largest high school dance marathon resides at Carmel High School. On February 23, nearly one-quarter of the student body – 1,200 students – raised a school record $294,206 for Riley Hospital. Super Mario Brothers has made a triumphant return. The “Powering Up for Kids” theme at Butler University Dance Marathon, complete with Mario and Luigi costumes and activities, raised $128,853 for Riley Hospital on February 23.
Riley Highlights Remembering Stephen: An extraordinary gift honors an extraordinary life When 18-year-old Stephen Hamer spoke at his graduation from Highland High School in Anderson, his battle with Ewing’s sarcoma was near its end. Still, his spirit was stronger than ever. “When I got the news I probably wouldn’t live more than a year,” the honors student told his classmates, “I decided to live every day to its fullest.” Now, more than 11 years after Stephen’s death, his father Tom Hamer is still hearing stories of how his son’s bright spirit impacted others: how he reached out to welcome a new kid at school; how he quietly tutored students with disabilities; *To read more about Stephen’s story please how he would drive his visit RileyKids.org/stories convertible with the top down when the circumstances in his own life on chilly autumn days. “He were less than ideal,” explains Scott. learned to squeeze every bit out of Driven by a desire to help save a 24-hour day,” says Tom. lives while honoring his son’s memory, After his cancer diagnosis at age Tom made a generous gift to pediatric 15, Stephen proudly shared his Riley cancer research at Riley Hospital. story to raise support for the hospital The new stem cell transplant unit in and other non-profit organizations. He the Simon Family Tower will soon bear earned several leadership awards for Stephen’s name. “No child should get his service to the community. “He was cancer,” says Tom. “We’ve got to keep incredible,” says Tom, recalling how pushing ahead. I want to do my part to Stephen insisted on walking the entire support pediatric research so that some golf course with his high school teamday they will be able to say, ‘We found mates even when the cancer came back it. We have a cure.’” a second time and invaded his lungs. Tom’s son Scott shares that passion “He didn’t complain. We lost a good for cancer research, and says this gift one when we lost him.” to Riley is a meaningful way to honor Stephen’s older brother, Scott his brother’s extraordinary life. “Riley Hamer, especially admired his Hospital was a special place for Stephen brother’s compassion. “Stephen had an and our family,” explains Scott. “We uncommon ability to put others before found hope and love there.” himself and see the best in others even
Pink Label Event is April 26-27, Cool Creek Commons at 146th and Greyhound Pass, Carmel
Help raise funds for The Caroline Symmes Endowment for Pediatric Cancer Research benefiting Riley Hospital for Children at The Pink Label Event, a high-end consignment sale featuring women’s, children’s, and men’s fashions and accessories. Admission is complimentary. Visit CarolineSymmes.org for more information on the April 26-27 event.
Get Inspired and “Share” Riley on Facebook Eight-year-old Maggie Keinsley of Fort Wayne inspired thousands of people by sending a heartfelt note and a $20 gift to Riley in honor of her friend, Camryn Saal, who is being treated at Riley for cancer. A post on the Riley Children’s Foundation Facebook page set off a flood of positive comments, “shares” and “likes.” To see uplifting posts like this and connect others with Riley, “like” us on Facebook.com/ RileyKids; re-tweet us on Twitter.com/ RileyKids; or view our videos on YouTube.com/RileyKidsVideo.
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VOICES of RILEY Matthew’s Angel: A Lifesaving Encounter in the Hallway by: Hope Dyer Matthew was born April 27, 2000; I knew right away something was wrong. We couldn’t lay him down to sleep — we had to put him in a swing or hold him. Matthew cried a lot and would often turn blue around his mouth. I called the doctor almost every day. At his 1– Hope Dyer, month checkup, Matthew’s oxygen Wolcottville, Ind. blood level was dangerously low. Mother of Riley patient The doctor told us he could get Matthew an appointment at Riley Matthew Dyer Hospital for Children next week.* Two of my friends were with me, and they said, “No, tell him NOW!” So, I called back, and our doctor told us to bring Matthew to Riley the next day. By the time my husband Joe and I got to Riley Hospital, we knew something was very wrong. Dr. Rich Schreiner just happened to walk by me in the lobby as I waited for Joe to park the car. He stopped and asked me if I needed help. The whole time he was looking down at Matthew in his car seat. He bent down and touched Matthew, then asked me if he could have him. I said, “No!” Then he asked me to go with him, and said that Matthew needed help. I was scared, but Dr. Schreiner said, “Please, you have to trust me,” so I went with him upstairs. The cardiology team asked us to hold Matthew and help him calm down. Then, Dr. Caldwell told me to lay Matthew down and step back. They were on Matthew like a swat team. Joe and I stepped out of the room. We were very scared. Dr. Caldwell came out and asked us why Matthew wasn’t brought in sooner. I explained that we were following the advice of our hometown doctor, and I started to cry. Dr. Caldwell looked at me and said something I will never forget: “This is not your fault. You didn’t do anything wrong. I am sorry.” He went back in and they did emergency surgery to save Matthew’s life. We found out Matthew would need more surgery the next day, for arterial switch of the great arteries. On the morning of the surgery, performed by John Brown, M.D., I was in the shower when I started to cry. I was begging God, “Please, please let my baby be okay. I love him 11 l RileyKids.org l Riley Messenger
so much.” I know this might sound crazy, but I felt God wrap his arms around me and help me to my feet. Then I knew Matthew was going to be okay. I went back to the room, and told Matthew that he had to fight. I told him how much we loved him. Once we got the news that he Matthew had made it through the surgery, my husband gave me a big kiss that I will never forget! We were so happy and relieved. As Matthew recovered, the nurses told us they couldn’t believe how much Dr. Schreiner had been on that floor to check on him. We never saw him. I guess you don’t see angels, though. Today, Matthew is 12 years old and doing great, thanks to follow-up care at Riley that included a pacemaker. He is a blessing, and we cannot thank Riley enough. It was a miracle for Dr. Schreiner to be at that door; I am so happy that I trusted him. We thank God, the Riley doctors and nurses, Ronald McDonald House, family and friends for saving Matthew. I know there are angels out there.
My Most Unforgettable Riley Moment by: Richard Schreiner, M.D. I will never forget that day about 12 years ago when I met Hope Dyer in a hallway. Her son became the most memorable patient I encountered in my 38 years at Riley Hospital, even though he wasn’t even technically my patient. Richard Schreiner, M.D. I remember noticing that Former Physician–in–Chief, the woman I was passing in the Riley Hospital for Children hall looked kind of dazed, so I at IU Health stopped to see if I could help. When I looked down into the car seat next to her, I truly thought her baby was dead. His color was blue-black. I remember thinking, “Oh my God, how am I going to tell her?” I introduced myself as I got down on one knee. I touched the baby and he moved a little, so at least I knew he was still alive. I had to think quickly and decide whether to take them upstairs to the heart center or rush the baby to the emergency room. I decided on the heart center. I brought Mrs. Dyer
Riley Emergency Department Riley’s emergency department is open 24 hours a day, 7 days a week, and physicians in every pediatric specialty are
Matthew Dyer of Wolcottville, Ind., reunites with the man who helped save his life 12 years ago, Richard Schreiner, M.D.
available. Parents should know that if their child is seriously ill, they can come to Riley any time for immediate treatment.
along, trying to reassure her. Once we arrived I said to the nurse across the desk, “This baby needs to see a cardiologist now.” The nurse started to explain the normal procedure, then she took one look at the child in the car seat and said, “I’ll take that baby!” She immediately knew this was a critical situation. Drs. Randy Caldwell and Tim Cordes were right there and immediately started resuscitating him. His pH and blood oxygen were extremely low; most doctors who care for adults would say that’s not compatible with life, but it can be in a baby — sometimes. This baby was probably minutes from death. He scared the daylights out of me. The cardiology team quickly found that the baby had transposition of the great vessels, which means the two main blood vessels in the heart are reversed. I had assumed the child would have brain damage due to prolonged, severe lack of oxygen. I lost touch with the family after the baby recovered from his heart surgeries and was sent home, but I never forgot them. About four years ago, I found a little envelope in my office with a note inside. “Dear Dr. Schreiner,” it said. “I don’t know if you remember me, but when I came to Riley Hospital seven years ago you stopped and grabbed me and took me to the heart center. I just wanted to thank you for saving Matthew’s life.” There was a picture of the boy, who I
now know is named Matthew Dyer. He is a beautiful, healthy, smart child. I called Mrs. Dyer that night and we talked about that unforgettable day. I learned the true reason she had appeared to be so dazed: she hadn’t really slept since Matthew was born because he was so sick. She told me how terribly guilty she felt that she didn’t bring Matthew to Riley sooner, but how grateful she was that Randy Caldwell had made a point of telling her it was not her fault. She told me if he hadn’t done that, she would have gone crazy. For Randy (who is now the head of cardiology at Riley) to realize that this mother was in such pain, and for him to take that moment to reassure her, proves that he is not just a wonderful doctor, he’s a wonderful human being. For every story like this, there are hundreds of others that demonstrate what the spirit of Riley is all about. Yes, we help sick kids heal. But their families need us too. So when you wear a Riley uniform you need to always go about your day ready to help, whether by guiding someone through the winding halls or by giving them words of reassurance that they’ll never forget.
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“Every baby that comes into the NICU is a special baby with a special story, but he was just a little rock star.” -NICU caregiver Laura Smith, R.N.
Gabriel Wittmer, Evansville
Gabe’s Second Chance One Sunday last fall, the Wittmer family had gathered to watch the Colts on television, when they noticed 5-year-old Gabriel across the living room throwing an imaginary football in a slow-motion, exaggerated ballet. Then Gabe explained to his puzzled audience: “That was a replay.” Thanks to the persistence of his medical team at Riley Hospital for Children at IU Health, Gabe got a “replay” of sorts after a precarious start in life. Josh and Peggy Wittmer learned their third son had a congenital diaphragmatic hernia—a hole in the muscle between his chest and abdomen—when Peggy was five months pregnant. Immediately after his birth by c-section at IU Health University Hospital on May 24, 2007, he was transferred to Riley’s Newborn Intensive Care Unit (NICU). Peggy, meanwhile, remained in bed, sick from anesthesia and sick with worry. Then, pediatric surgeon Thomas Rouse, M.D., appeared in her doorway: “Dr. Rouse personally wheeled me to Gabe’s side,” she recalls. “We were quite worried about Gabe,” Dr. Rouse says. “I wanted to make sure she 13 l RileyKids.org l Riley Messenger
could spend what we thought at that point was a little bit of time with him.” A chaplain was called to baptize Gabe and offer comfort to his family. But the next morning Dr. Rouse and other specialists determined that Gabe might have a chance if they put him on ECMO, a bedside infant heartlung bypass machine. “This was a baby we were going to say goodbye to,” recalls NICU caregiver Laura Smith, R.N. “Then the whole plan of the day changed. Every baby that comes into the NICU is a special baby with a special story, but he was just a little rock star.” “He kept doing a little better than how we thought he’d be doing,” Dr. Rouse says. A CT scan revealed what the surgeon calls “a very uncommon form” of the condition, in which Gabe’s liver was crushing his lungs. Dr. Rouse repaired the hernia in a high-risk but essential surgery. Gabe would need additional procedures but went home after two months at Riley Hospital. Dr. Rouse continues to provide his follow-up care through Riley’s partnership with Deaconess Gateway Hospital near the Wittmers’ home in Evansville. Gabe’s parents call their kindergartner their “sweet and vinegar” because he is at the same time loving and stubborn. He loves school and playing football outside with his big brothers. He joined a t-ball team – a milestone his mother dreamed about during pregnancy but feared she would never see. Thanks to his Riley replay, the Wittmers are watching their son savor childhood – at full speed.
Emergency Care at its Best
Associate Editor Jason Mueller
You won’t have to look any further than the cover of this issue of Riley Messenger to realize how any family anywhere in Indiana might need the expertise provided at Riley Hospital for Children in a moment’s notice. The Petersons were enjoying an evening out when they received a call that literally dropped them to their knees. Three of their children had been in a car accident and were in ambulances on their way to Riley Kate, Charlie and Gabriel Peterson Hospital — their youngest was gravely injured. As you read the Petersons’ story you’ll learn why Riley was more than the right place, it was the only place for their children that day. Their diverse injuries were given immediate care at the highest level. The youngest boy’s serious head injury received the urgent attention that saved his life. And, equally important for a family in the midst of such an unfathomable crisis, the Petersons were tended to by an array of professionals — chaplains, Child Life specialists, nurses and physicians, all of whom helped to meet their family’s complex medical, emotional and spiritual needs. Riley Hospital’s Emergency Department was recently recertified by the American College of Surgeons as Indiana’s only Level I Pediatric Trauma Center. Last year children made more than 34,000 emergency visits, arriving in cars, ambulances and helicopters at Riley’s Emergency Department — the only place in our state with staff members trained and equipped to handle the most serious trauma cases. When the new Emergency Department opens this summer in the Simon Family Tower the number of children being treated is expected to significantly increase. The expansion of the Emergency Department has only one motivation — the same motivation that drives all strategic decisions at Riley Hospital for Children — the needs of the children of Indiana. We are grateful to the Petersons and to the hundreds of Riley families who tell us their stories so that we can share them with you. In reading their stories we know you will find the rewards for the support you provide — and the inspiration for your ongoing commitment.
Art Director David Birke
Riley Messenger Spring 2013 Dedicated to friends and partners of Riley Children’s Foundation Riley Children’s Foundation 30 S. Meridian St., Suite 200 Indianapolis, IN 46204-3509 RileyKids.org Email: riley@RileyKids.org Jim Morris Chairman, Board of Governors Kevin O’Keefe President and Chief Executive Officer Robin G. Bellinger Chief Development Officer Maureen Manier Chief Communications Officer Vicki Mech Hester Chief Strategy Officer David Schapker Chief Financial Officer
Editor Trisha Shepherd
Contributing Writers Nancy Alexander Jennifer Carmack-Brilliant Photography Esther Boston Meghan Hochgesang Kimberly K. Housley Dave Jaynes Linda Tipton Tim Yates
Kevin O’Keefe President and CEO Riley Children’s Foundation
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OUR RILEY STORY
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With a rich 140-year as nice and patient as he is talmuch that the entire team of doctors history, Evansville-based ented. He saved our son’s life.” would come in, even late at night,” says Koch Enterprises, Inc., has A few months after Luke David. “They talked through every long embraced philanthropy. was born, his second cousin, decision right there with us. We were After several of the Koch Katy Koch, also found her never in the dark.” Katy needed 14 days family’s youngest members life in the hands of Riley of kidney dialysis, but under the care of needed care at Riley Hospital specialists. Her parents, Riley nephrologist Jeffrey Leiser, M.D., for Children at IU Health last David and Sharlet Koch, she slowly recovered. year, the privately-owned became concerned when Today, Katy is back to gymnastics, Luke Gilberg, Evansville corporation said “thank you” doctors in an Evansville ballet and swimming. Her second cousin, by making a generous gift to Riley. hospital couldn’t pinpoint what was Luke, is also doing great. He can sit up When Katy Gilberg, a member of the making their 4-year-old daughter vioand eat on his own, and continues hitting Koch family, and her husband Josh wellently sick to her stomach. When Katy’s all developmental milestones. “The support comed their youngest son, Luke, in June liver and kidneys began to fail, she was from our family is just amazing,” Katy 2012, he needed immediate surgery at airlifted to Riley Hospital where doctors Gilberg says about the Koch Foundation’s Riley. He had hydrocephalus and a rare found the problem gift to Riley, which helps to support condition called tracheoesophageal immediately: hemolyticRiley physicians who see patients fistula, where the esophagus is connected uremic syndrome (HUS) at Deaconess Gateway Hospital in to the trachea but not to the stomach. caused by an E. coli Newburgh. David Koch says the “Child Life specialists would check on me, infection that Katy family business felt giving back to hold Luke while I showered and bring likely contracted from Riley was simply the right thing to him gifts,” Katy says through tears of unpasteurized apple do. “We hope to reach out and help gratitude while describing their 10-week cider or a petting zoo. people in the same way we have Katy Koch, Evansville stay. “Our surgeon (Alan Ladd, M.D.) is “We appreciated so been helped.”