Spira 2016 2 by Children's Hospital & Medical Center

Childrenâ&#x20AC;&#x2122;s Hospital & Medical Center

2.2016

Contents 4

Journey into the Future: Children’s Launches Critical Expansion, Capital Campaign

Losing Weight, Gaining a Healthier Future: Saving Young Lives with Bariatric Surgery

Back to Class with Confidence: School Re-Entry Program Helps Ease Patients’ Transition

Four-Legged Therapy: Facility Dog Joins Children’s Team

John and Lindsey Elsaesser: The Miracle of It All

Ambitious Because We Care

Spira Spira is the biannual magazine of Children’s Hospital & Medical Center, 8200 Dodge St., Omaha, NE 68114. Spira@ChildrensOmaha.org SpiraMagazine.org

C H I LD R E N ’S E M B RAC E S N EW M I S S I O N AN D VI S I O N

Children’s Hospital & Medical Center’s founding mission — So that all children may have a better chance to live... — has rooted the organization and reflected its heart for almost 70 years. The statement was forged in the 1940s as a polio epidemic gripped both the nation and the Midwest, heightening the community’s need for expert pediatric care.

Now, as Children’s embarks on a new era of growth and transformation, we find ourselves at a reflection point. The timing is right to modernize our mission and vision as we embrace who we are today and what we aspire to be. We have expanded in recognition, size, outreach, service, expertise, collaboration and reputation. We are a healthy organization that has a powerful mandate to provide routine-to-complex care for all children, and our focus now extends well beyond their survival to their quality of life. Our new mission better reflects that: To improve the life of every child — through dedication to exceptional clinical care, research, education and advocacy. Given all that we are today, it is a more apt promise to our patients and their families. Our new vision is equally inspiring: To be a global leader for children’s health. Incredibly bold? Yes, but only because we care.

“If we are an organization with global impact and reach, we will attract the best and brightest to Omaha to be part of our institution,” explains Richard G. Azizkhan, M.D., Children’s President & CEO. “That, in turn, will continue to fuel our growth, impact and relevance in this highly competitive world of medicine and academics. Most importantly, we will be able to deliver on our moral obligation to care for the very smallest and sickest among us.” We commit to this bold, bright future with resolve, optimism and a strong sense of responsibility — because the children and families we serve deserve nothing less.

JOURNEY INTO THE FUTURE Childrenâ&#x20AC;&#x2122;s Launches Critical Expansion, Capital Campaign

Rendering of the Hubbard Center for Children

THIS IS A JOURNEY INTO THE FUTURE. A RIBBON-CUTTING CEREMONY CIRCA 2021. A parade of local dignitaries takes the podium, speaking about necessary growth, the power of collaboration and Omaha’s ingrained penchant for philanthropy. Above all, they talk about completeness of care, the implications for families near and far and the start of a bold, new era for Children’s Hospital & Medical Center.

WELCOME TO THE HUBBARD CENTER FOR CHILDREN, A CUTTING-EDGE EXPANSION THAT WILL ELEVATE CHILDREN’S CAMPUS AT 84TH & DODGE STREETS AND ACCELERATE EFFORTS TO BUILD ONE OF THE NATION’S LEADING EPICENTERS OF PEDIATRIC HEALTH CARE.

“It’s fundamentally about children, their families and the impact that you can have on the lives of people that you may never even meet,” says Richard Azizkhan, M.D., Children’s President & CEO. In time, the dirt will be moved, the footings set and the steel erected. For now, the promise of the Center is best reflected through architectural renderings and the vision of those developing this latest milestone in the life of Children’s — a timeline that includes the 1948 founding, the move west in 1981 and the opening of the free-standing hospital in 2000.

Rendering of the Hubbard Center for Children

“It’s really taking us not just one level but two or three levels higher than we have been. It is ambitious, but it’s because we care,” Dr. Azizkhan says. “I want my grandchildren and great grandchildren to have the benefits of a better health care delivery system and a better health status.” Growth projections make it clear: to realize Children’s mission in the future — and to meet the needs of families right now — the institution must grow. “We have children who are leaving our community for specialized health care in other children’s hospitals. They’re going to Denver, Kansas City, Boston and Cincinnati. It’s because we have gaps — and those gaps are going to be closed,” Dr. Azizkhan explains.

Rendering of the Hubbard Center for Children

2.2016

CENTER FOR CHILDREN: ❱❱ Neonatal Intensive Care Unit ❱❱ Fetal Care Center ❱❱ Pediatric Intensive Care Unit ❱❱ Cardiac Care Center ❱❱ Surgical Services ❱❱ Emergency Department ❱❱ Short-Stay Observation Unit

“IT’S ABOUT MUCH MORE THAN A BUILDING; IT’S ABOUT OUR COMMUNITY.” Richard Azizkhan, M.D., President & CEO Children’s Hospital & Medical Center

“THE HUBBARD CENTER FOR CHILDREN WILL FOSTER THE GROWTH OF OUR PEDIATRIC CRITICAL CARE IN THE HEARTLAND AND ACROSS THE WORLD. OUR EXPANDED PROGRAMS AND RESEARCH WILL ELEVATE OMAHA TO A TOP DESTINATION FOR THE BEST IN PEDIATRIC SPECIALTY CARE.” Beth Greiner, Executive Director & Chief Development Officer Children’s Hospital & Medical Center Foundation

WHAT GROWTH LOOKS LIKE: THE HUBBARD CENTER FOR CHILDREN ❱❱ 10 floors (including one underground) ❱❱ 500,000 square feet ❱❱ Up to 100 new beds ❱❱ Attached parking garage “Children’s, from a size perspective, will double in the next 10 years because of the kinds of services and programs we bring to bear,” Dr. Azizkhan says. “We’re going to bring in the right kinds of specialists. We’re going to have the integrated teams that can care for those children with complex and rare disorders.”

Neonatal Intensive Care Unit

Theodore F. Hubbard, M.D., Cardiac Care Center

The Hubbard Center for Children will house Nebraska’s only Level IV Neonatal Intensive Care Unit (NICU), shifting it from leased space across the street and closer to Children’s highly-skilled pediatric specialists and diagnostic and surgical facilities.

The Hubbard Center for Children also holds the promise of the best outcomes and the best experience for young heart patients and their families. It will serve as the new home for Children’s Theodore F. Hubbard, M.D., Cardiac Care Center, a facility that offers the most specialized expertise and technology available, providing medically complex heart patients like Katelyn Larson a lifetime of comprehensive care. Now an active toddler, Katelyn received a heart transplant at Children’s as a baby.

“It will make a huge difference for us to all be together in the same building," says Nicole Birge, M.D., NICU medical director. "Every time we have to bring a baby out of the NICU and across the street to have a procedure or surgery, it can be very stressful for the babies, and sometimes they don’t handle that trip very well. The Center will minimize that stress.” Children’s youngest patients and their families will benefit from at least 48 state-of-the-art rooms in the new NICU.

Fetal Care Center The Center also will be home to an important companion program to Children’s Neonatal Intensive Care Unit — the Fetal Care Center. For expectant moms carrying high-risk babies, it provides advanced diagnostic and delivery services, and for those fragile infants, immediate access to Children’s team of specialists. “We want to be able to keep moms and babies together,” Dr. Birge says. “With this expansion, we're hoping to be able to provide more labor and delivery services to mothers so they can stay here in the hospital with their babies.”

Pediatric Intensive Care Unit Right now, Children’s Pediatric Intensive Care Unit (PICU) cares for the region’s sickest, most critical children and teens. Projections indicate patient need will grow by 40 percent by 2025. To accommodate, the expansion will house Children’s PICU and space for additional pediatric or neonatal intensive care capabilities. “Expansion for the PICU is vitally important because right now, we’re running at capacity pretty much every day,” explains Andrew Macfadyen, M.D., PICU medical director. “The last three years here at Children’s, we’ve seen an incredible amount of growth as far as the number of kids who need our services.”

“Katelyn has a complex health issue that will be a lifetime challenge. The fact that Children’s has a program that will allow her to go there for lifetime care is so comforting for me,” says Wendy Larson, Katelyn’s mother.

Surgical Services Expansion will double Children’s surgical services capacity as well. The need for that additional surgical space is critical. Surgery volumes increased by 13 percent in 2015 alone, driven by more specialties, more complex cases and a larger regional reach. With more operating rooms between the hospital and the new Hubbard Center for Children, Children’s will be ready to meet future needs. “We think of how we can make this the best children’s hospital in the country. This expansion gives us that chance — that chance to really lead the rest of the country in caring for children,” says Robert Cusick, M.D., pediatric surgeon.

Emergency Department A larger, more modern Emergency Department is another element of Children’s growth. It will allow more patients to be seen more quickly. “Our current Emergency Department has physical space that was really designed for volumes about 60 percent of what we’re seeing right now. As we continue to grow, that number is going to become more and more stretched,” says William McDonnell, M.D., clinical service chief, Emergency Department.

Short-Stay Observation Unit If patients need to be monitored after treatment in the Emergency Department or after an outpatient surgery, a Short-Stay Observation Unit will offer appropriate, cost-effective care for patients who might otherwise be transferred to an inpatient floor.

ONLY THE BEGINNING… WITH THE CENTER, MORE ROBUST PROGRAMS AND SERVICES WILL BE POSSIBLE, INCLUDING ENHANCEMENTS TO PROGRAMS OF NATIONAL PROMINENCE LIKE OSTEOGENESIS IMPERFECTA, WHICH DRAWS PATIENTS FROM ACROSS THE COUNTRY AND AROUND THE WORLD.

2.2016

CLINICAL CARE: NEW PROGRAMS AND SERVICES ❱❱ Colorectal Center ❱❱ Neurosurgery ❱❱ Fetal Surgery ❱❱ Neuro-oncology ❱❱ Transitional Care ❱❱ Expanded Pain Management ❱❱ Behavioral Health Medical Stabilization ❱❱ Larger Pharmacy ❱❱ Enhanced Radiology & Pathology services

The Center also will support the advanced research needed to take pediatric care to the next level and attract the nation’s best caregivers. “We’re aspiring to become a $100 milliona-year funded research enterprise over the next 10 years,” Dr. Azizkhan says. “We’re currently at about $10 million in funding.” Collaborating with local partners and taking advantage of current research strengths in pediatrics, the Gary A. Perkins Pediatric Research Institute will focus on four key areas of medicine — cancer, heart, infectious disease and rare diseases — with the goal of finding new cures and treatments, improving outcomes and, ultimately, saving young lives. “When I think of genetic services that we’re going to be able to provide over the next 10 years, it’s extremely exciting,” says Eric Rush, M.D., medical director, osteogenesis imperfecta and metabolic bone programs. “We’re talking about targeted therapeutic clinics; we’re talking about precision medicine for children. That’s going to be

reality. There is no reason we shouldn’t be providing that high level of care at the cutting edge here at Children’s.” With eyes on the future, Children’s has always valued the opportunity to educate the next generation of health care professionals as a teaching hospital. New facilities and leading-edge programs will raise the bar on Children’s ability to prepare future caregivers — clinicians who may, one day, help staff the massive expansion. “We’re doubling our institution. It’s not just our capacity but it’s also the number of people that need to be employed to serve in the various roles,” Dr. Azizkhan says. Connected physically and integrated architecturally, the Hubbard Center for Children will stand between the hospital and Specialty Pediatric Center. A ceremonial groundbreaking officially launched the project in December. Construction is expected to last until 2021. What Children’s is creating is ambitious, but it’s the ‘why’ that truly resonates —

an unwavering belief that families deserve a greater depth and breadth of pediatric services and the highest-value care closer to home; that a strong children’s hospital will draw expertise from around the country; and that new facilities will allow education and research efforts to flourish. “This expansion is transformative for Children’s. It’s really taking us to the major leagues in terms of children’s hospitals,” Dr. Rush adds. A former community hospital, now a regional and national academic medical center, Children’s is embarking on a new era of dramatic transformation and significant growth. The journey into the future is underway. “We are excited about pushing our skills, pushing our programs, pushing our personnel to new limits,” says Robert Spicer, M.D., clinical service chief, Pediatric Cardiology. “I think we want to do that locally, regionally, nationally — so that we can do the best that we can for as many as we can.” 9

“FOR MORE THAN 60 YEARS, PHILANTHROPY IS THE CORE REASON CHILDREN’S HAS BEEN ABLE TO PROVIDE THE BEST MEDICAL CARE FOR THE SICKEST AND SMALLEST CHILDREN OF THE HEARTLAND. OUR DONORS RECOGNIZE THAT ENSURING CHILDREN ARE HEALTHY IS NOT ONLY VITAL TO THEIR FUTURE — BUT OUR REGION’S GROWTH AS WELL.” Beth Greiner, Executive Director & Chief Development Officer Children’s Hospital & Medical Center Foundation

CHANGING LIVES TOGETHER. THAT IS THE NAME OF THE FIVE-YEAR, $50 MILLION CAPITAL CAMPAIGN THAT WILL HELP SUPPORT THE CRITICALLY-IMPORTANT HUBBARD CENTER FOR CHILDREN AND FUEL CHILDREN’S AMPLIFIED RESEARCH EFFORTS. “Children’s is at a pivotal moment," says Beth Greiner, executive director and chief development officer, Children’s Hospital & Medical Center Foundation. "As the only pediatric hospital in the region, we are often at capacity and children are being referred to facilities more than three hours away. Our kids deserve the best medical care and the new Hubbard Center for Children will ensure gaps in care are filled.” The ambitious expansion will require widespread community investment, including the generosity of benefactors who have put children first again and again, decade after decade. The Theodore F. and Claire M. Hubbard Family Foundation has pledged a lead gift to the project in honor of Theodore F. Hubbard, M.D., and his wife Claire M. Hubbard. In addition to naming the building, the foundation has also pledged support to core areas

2.2016

within the facility, including the new Theodore F. Hubbard, M.D., Cardiac Care Center and the Claire M. Hubbard Healing Garden Solarium. Ted Hubbard Jr. and his wife, Colleen, have generously funded the new Rooftop Garden. “We have great people here that are very giving and philanthropic in the way they think about life,” says Richard Azizkhan, M.D., Children’s President & CEO. “If we can’t do something extraordinary in this community, who else is going to be able to?” Robert Spicer, M.D., clinical service chief, Pediatric Cardiology, says investing in Changing Lives Together is an investment in the future of our children. “It’s creating a legacy of your own through the care of kids who are in need. I can think of no greater challenge and no greater responsibility than to ensure the care of kids.”

THE HUBBARD CENTER FOR CHILDREN: DR. THEODORE F. AND CLAIRE M. HUBBARD Dr. Theodore F. and Claire M. Hubbard were longtime Omaha residents and philanthropists. Dr. Hubbard, who died in 1995, was a pioneer in the field of cardiology, serving his entire career in Omaha helping people in Nebraska and western Iowa. Claire M. Hubbard died in 2011. Over the years, the Hubbard family has generously supported numerous Nebraska institutions, including the University of Nebraska Medical Center, University of Nebraska-Lincoln and Omahaâ&#x20AC;&#x2122;s Henry Doorly Zoo and Aquarium.

LOSING WEIGHT,

Gaining a Healthier Future SAV I N G YO U N G LIV ES WI TH B A R I ATR IC S U R GERY

ackenzi Berglund is quickly moving from a life confined by what she can’t do — to a life defined by what she can. “I’m definitely more confident now than I ever was,” she says. “I’m more outgoing.” Clothes shopping with her friends? Mackenzi can do that now. She also can swim underwater, learn to ride a bike and really explore her strengths on the track and volleyball court. “She can be a kid now — and that’s the most exciting thing,” says Dana Hoover, Mackenzi’s mother. “She can be a normal 14-year-old.” At her heaviest, Mackenzi weighed 362 pounds, had a body mass index (BMI) of more than 52 and suffered from a host of health issues: type II diabetes, pulmonary hypertension, polycystic ovarian syndrome, fatty liver disease… All of them related to her weight. Alarming bouts of sleep apnea

2.2016

triggered the need for a tracheotomy (trach) tube and ventilator hook-ups at night.

'Dr. Cusick’ is Robert Cusick, M.D., a boardcertified pediatric surgeon at Children’s.

“Diet, exercise plans, medication — we tried everything,” says Hoover.

‘Carly’ is nurse practitioner Carly Frost, MSN, FNP-BC, who works with overweight and obese children through Children’s HEROES (Healthy Eating with Resources, Options and Everyday Strategies) pediatric weight management program.

And nothing worked. Mackenzi, who was born weighing 7 pounds, 10 ounces (Hoover’s first born and smallest baby), just kept gaining excessive amounts of weight. She weighed 72 pounds at 2 years old, 96 pounds two years later. “We didn’t know what was going on,” Hoover recalls. “She wasn’t over-eating. It was just happening.” By age 11, Mackenzi had reached the 362-pound mark. “Dr. Cusick and Carly saved her life,” Hoover says. “If they didn’t push for her to have the surgery, as fast as she was growing, she would have had a heart attack or something massive — a stroke."

‘The surgery’ is a gastric sleeve resection, a laparoscopic (minimally-invasive) procedure during which a stapling device is used to remove about 85 percent of a patient’s stomach. Dr. Cusick has partnered with the bariatric surgery team from Nebraska Medicine, headed by Cori McBride, M.D., to perform the procedure. They also partner on gastric bypass surgeries, which shrink the size of the stomach and reroute the intestines. For Mackenzi — and children like her — these bariatric procedures are a connection to a healthier way of life. They also are a last resort.

“THIS IS NOT A COSMETIC SURGERY. THIS IS A LIFECHANGING SURGERY.” Robert Cusick, M.D., PEDIATRIC SURGEON

“These aren’t children who are a little overweight. These are children on the extremes of obesity,” Dr. Cusick says. Candidates for bariatric surgery at Children’s must have a BMI of at least 40 or a BMI of 35 with another significant co-morbidity, such as diabetes, obstructive sleep apnea, lipid disorders, pulmonary hypertension or fatty liver disease. To give a little context: ❱❱ A BMI of 18 to 25 is considered “normal” weight. ❱❱ A BMI of 25 to 30 is considered overweight. ❱❱ A BMI of 35 is considered obese. “On average, the children we’ve operated on are around a BMI of 50,” Dr. Cusick says. “Our average ending BMI is in the range of 35. So, they’re still obese after this; they’re just in a much healthier place.” Children’s launched its bariatric surgery program in 2013. As of November 2016, nine patients have undergone bariatric surgery, and six are currently in the evaluation process. “If these kids can achieve great success without surgery, we’d love that. But when they don’t achieve that success, we want to be able to offer bariatric surgery,” Dr. Cusick says. Mackenzi underwent her procedure in October of 2015. It took less than an hour. More than a year later, the results are dramatic. The Nebraska City freshman is down almost 120 pounds, and her activity level is way up. She walks a lot, plays volleyball and throws shotput for the track team. She is no longer on medication for pulmonary hypertension or Type II diabetes, her polycystic ovarian syndrome has improved and her liver is normal. “I knew this was going to be a big deal,” she says. In June, Mackenzi had her trach tube removed after 11 years, which means, in addition to sleeping better, she can actually go underwater when swimming with her

2.2016

friends. Mom celebrated the milestone (and Mackenzi’s 14th birthday) with a surprise party, which included lots of friends and a DJ. Mackenzi started coming to Children’s for treatment and monitoring when she was just 6 months old. She has had a total of seven surgeries, including a heart catheterization at age 7. Three years ago, Mackenzi enrolled in the family-centered HEROES program. A multi-pronged effort to get overweight or obese children on the path to proper health, HEROES is the only pediatric weight management program in the region. It combines medical management, nutrition, behavior and fitness classes, behavioral health therapy and consultations with various specialists. “Every day we see severely obese patients with BMIs above 35, 40 or more. For these patients, it is a challenge to decrease BMI to the ‘normal’ levels of an acceptable weight with only our program,” says Cristina Fernandez, M.D., pediatrician and medical director of the HEROES program. “For that reason, bariatric surgery will be an option for some of those patients who are morbidly obese and already learning about a healthy lifestyle with our program.” Children on the bariatric surgery pathway participate in a six-month preparation program before surgery, meeting monthly with the multidisciplinary HEROES team, which includes Dr. Fernandez and Frost, a social worker, psychologist, dietitian and exercise specialist. “It’s a lot of behavioral modification we’re teaching and reinforcing,” Frost says. “We talk about basic eating-healthy-for-life and portion control, making more meals at home instead of going out and not eating for emotional reasons.” During the six months, the team is also gauging a patient’s crucial ability to comply: Are they taking their medicine? Are they showing up for appointments? “After surgery they’re going to be on a special liquid diet for three weeks post-op.

They’ll have to take frequent small sips of liquid. If they drink a lot, they’re going to get nauseated. If they don’t drink, they’re going to get dehydrated. We’ve had a couple of patients who’ve had to come back to the hospital for IV fluids because they were non-compliant. In other words, they can get really sick from non-compliance,” Dr. Cusick explains. Mackenzi more than proved her ability to comply during the six-month pre-op program. “She lost close to 20 pounds because she was so determined to start that diet and eating-for-life regimen,” Frost says. Throughout the process, Mackenzi was engaged in all discussions. Dr. Cusick explained the risks of the gastric sleeve resection, which include a small risk of a leak or bleeding from the staple line, bowel obstruction, dehydration and the potential for vitamin deficiencies. Mackenzi never wavered… “Surgery was the biggest thing I have ever done,” she says. …neither did Dr. Cusick. “He was amazing,” Hoover says. “I feel like there was never a doubt in his mind that this is what she needed.” Hoover’s insurance company, though, was not as certain. “We fought for a year between appeals and phone calls,” she says.

Dr. Cusick concurs: insurance companies still present a major hurdle in the realm of pediatric bariatric surgery. “They deny the procedure because it’s expensive and they say it’s experimental,” he says. “We go into this prepared for the ‘battle’ of getting it approved. In the last two years, there is increasing evidence that it has good outcomes.” That evidence includes a recent article in the New England Journal of Medicine (“Weight Loss and Health Status Three Years after Bariatric Surgery in Adolescents”), which found “significant improvements in weight, cardio-metabolic health and weight-related quality of life at three years after the procedure.” Dr. Cusick adds, “It’s not hard for someone to do the math: insurance companies can either pay for the surgery or pay for these ongoing health conditions. The surgery is very successful at helping them lose weight, but it’s even more successful at correcting the co-morbidities.” Doctors have since traced Mackenzi’s dramatic weight gain to a genetic anomaly that triggered a rare overgrowth syndrome. She returns for check-ups and lab work every six months. (Visits were more frequent immediately after surgery and included home health visits for the first two to three weeks.) She eats smaller meals more often, supplements with vitamins and minerals to combat any deficiencies and drinks a lot of water.

Even at her heaviest, Mackenzi says bullying was not an issue for her. She credits a great support system both in Auburn, where she lived for most of her life, and Nebraska City, where she moved more than two years ago. Mom, on the other hand, says she received her share of criticism for allowing the surgery to go forward. “They’d say, ‘That’s the worst thing you can ever put your kid through,’” Hoover recalls. “It’s not,” Mackenzi answers. Dr. Cusick says the efficacy of the procedure is changing public opinion and the opinion of reluctant primary care providers. He calls his work with young bariatric surgery patients “one of the most rewarding things I’ve done as a pediatric surgeon because you see huge transformations in these kids. We’ve tried all the medical things and seen them fail. To finally have that success — it changes their whole outlook on life. Their whole persona is changed.” That’s certainly been the case for Mackenzi. “She wanted her life to change,” says Mom. Mackenzi calls it her journey (she even has her own hashtag: #MackenzisJourney), and she knows there is more progress to make. Still, when she looks at old pictures, she can’t believe how far she has come. She can imagine a vibrant future. “I can do more now than I could ever do before.”

2.2016

BACK TO CLASS with

CONFIDENCE School Re-Entry Program Helps Ease Patients’ Transition

Chase Fisher’s infusaport made him special and he knew it. Nobody else in Chase Fisher’s first grade class at Grace Abbott Elementary had one or had any idea what it was for. And he wanted to show it off. So when Christy Hogan, a child life specialist at Children’s Hospital & Medical Center, offered to go to Chase’s school to tell his classmates about the device as part of the hospital’s School Re-Entry program, his answer was emphatic: “YES!” “He’s a very social kid,” says Chase’s dad, Adam Fisher. “So he wanted to show off his port so all the kids would know about it.”

t the time, the port was still pretty new. Doctors had just found malignant tumors behind both of Chase’s eyes, caused by his neurofibromatosis (NF1). Chase was diagnosed with the disorder, which can cause tumors to grow inside and outside the body, when he was just a baby. But until he was 7 years old, his NF1 hadn’t caused any malignant tumors. Shortly after beginning first grade, Chase’s teacher noticed he was having a hard time focusing, paying attention and seeing the white board in the front of the room. An MRI scan revealed that he did, in fact, have tumors, and that those tumors were cancerous.

kindergarten through 12th grade who live within a 50-mile radius of Omaha, provides a system and process for a child life specialist to educate a patient’s classmates and teachers about his or her illness. The goal is to help make that patient’s transition back to school — or absences during treatment — easier and more comfortable for everyone.

So Chase got an infusaport. It was placed in his chest to distribute chemotherapy into his blood stream to try to shrink the tumors. He started getting out of school every Tuesday afternoon to get his infusions at Children’s. He sometimes only went to school for half the day on other weekdays because he was too tired to stay.

Children suffering from chronic diagnoses or who have undergone substantial physical changes often have to face considerable social and physical challenges, on top of academic challenges, when they return to a school environment. They often are asked a lot of questions, are unable to participate in the same physical activities as others, don’t have the stamina to make it through the entire school day or have worries or fears about being accepted as different. The program at Children’s helps the child — and his family — through all of those challenges by educating teachers and classmates about his or her diagnosis, treatment plan and side effects so they don’t have to. It also is designed to provide reassurance to other students and instill empathy and tolerance about the situation when the child returns.

His friends started asking lots of questions. Why did you get sick? How did it happen? How did you know you were sick? Where is your port? That’s when Hogan, who has worked in her role at Children’s for 19 years, thought Chase might be a good candidate for the hospital’s School Re-Entry program. Children’s received grant funds to develop the program in 1994, and it has been provided by Child Life staff ever since. The program, offered to patients in

“We tell a child’s classmates or teachers everything, so the child can just go back to school and be a kid,” Hogan says. “They can focus on school and fun, and not have to focus on everything that happened to them.”

“My goal is to help everyone in the room say words like ‘cancer’ or ‘chemo’ with confidence,

and know it’s OK to say those words,” says Hogan. “We want everyone to feel like it’s not wrong to talk about being sick.” Because every child’s situation is different, every presentation is different, Hogan explains. Some kids, like Chase, have to leave school on a regular basis for chemotherapy treatments. They might miss classes every week, in some cases for months or entire years. Other kids might have regular medical procedures at school, like blood testing or shots to treat diabetes. And some kids might undergo physical changes like hair loss or a change to their face as the result of a surgical procedure. All of these situations inspire different questions and require different explanations. When preparing each presentation, Hogan and Melissa Epley, the other child life specialist at Children’s involved in the program, consider the age of the child, their diagnosis, treatment plan and any requests from his or her family. They ask the child who they want at the presentation, whether it’s the entire class, part of the class or just their closest friends. And they talk with family members about how they want certain commonly asked questions answered. “Sometimes the school visit is about helping the teachers get comfortable,” says Hogan. “Some are very worried about having a chronically sick child in their school. They need some reassurance to help them feel comfortable. You encounter lots of different scenarios.”

“I felt like a burden was taken off of us. For all the things we were given responsibility for, this was something we could give to someone else.” TAMARA FISHER,

2.2016

Mom

Younger kids sometimes want to incorporate “Monkey in My Chair,” a national program that provides each child with a “monkey kit” that includes a big stuffed monkey that takes their place in school when they can’t be there. Older kids often prefer to have a smaller group of close friends meet with the child life specialist. When Chase was helping Hogan plan his presentation for last September, he knew he wanted to show his classmates his port. So Christy talked about it. She brought an X-ray of the back of Chase’s eyes where the tumors were. She talked about how chemo would be used to try to make those tumors smaller and how chemo may or may not affect Chase in the following year. While she was talking, Chase sat in the front of the class, smiling and helping when he could.

every three months for the next year and check-ups with an ophthalmologist every couple of months. Chase’s journey hasn’t been easy for him or his family. And it’s not over yet. But the support he received through Children’s School Re-Entry program last fall provided Chase and his family with a foundation of support when they really needed it. It also gave Hogan a chance to serve the Fisher family in a different but very special way. “You take care of people and love them all,” Hogan says. “But once you’ve done a school visit for someone, they have a different level of appreciation for Children’s. It just makes you proud to have been able to do that for them.”

“He was really eager and excited to be a part of it,” Hogan remembers. Tamara Fisher, Chase’s mom, was not just glad to have Hogan talk to Chase’s friends and teachers — she was relieved. “I felt like a burden was taken off of us,” Tamara says. “For all the things we were given responsibility for, this was something we could give to someone else… that was really comforting.” It’s also comforting now to the family that Chase’s tumors have shrunk during his year of chemo. His last infusion was the week of Thanksgiving 2016. After that, he has MRIs

FOUR-LEGGED THERAPY Facility Dog Joins Children’s Team C

hildren’s Hospital & Medical Center’s newest employee is also its most popular. No one seems to mind if he snuggles up for a power nap during the workday or takes frequent breaks outside.

Child Life specialist Britta Carr — who some might argue has the coolest job in the world — is Sven’s handler. She’s his boss, landlord and “dog mom,” as the two work and live together 24/7.

That’s because Sven brings pure, four-legged joy and comfort to everyone he meets. And, beyond warm feelings, the 1-year-old golden retriever is providing unique, specialized therapy to young patients.

“I wanted to be a veterinarian when I was little, so this role is a dream job that combines two things I love: working with kids and animals,” says Carr.

In November 2016, he joined Children’s team as the hospital’s first-ever resident facility dog. A 40-hour-a-week employee with patients to see and therapy to facilitate, Sven is not only popular — he’s busy, too. “The facility dog assists our Child Life staff in providing support and normalization in the hospital setting,” says Terry Patterson, Children’s manager of Family Resources. “This is more than just a diversion; this is therapy.” It’s that distinction that sets Sven as a complement to Children’s handful of pet therapy dogs and volunteers, who frequent the hospital for a few hours each week to deliver feel-good diversion and distraction. The Child Life department at Children’s offers psychosocial support to patients and families while hospitalized. Experts in child development, child life specialists promote effective coping through play, preparation education and selfexpression activities.

2.2016

Carr flew down to Atlanta to meet Sven and train with him just a week before his first day on the job in Omaha. Sven, on the other hand, has been training for his role since birth with Canine Assistants — a non-profit organization that trains and provides service dogs for individuals with physical disabilities and hospitals. Canine Assistants’ breeding program funnels into a training program with a special health care track, usually lasting six to eight months. During that time, Sven spent many hours at Children’s Healthcare of Atlanta and lots of quality time with humans. “We really expose them to all aspects of human life, so they trust people and they can handle the noises and the equipment of the hospital,” explains Karen Casto, director of Canine Assistants’ hospital program. “We don’t use many commands or cues; for us, it’s all about the trust and the bond.” Carr directs Sven as they provide various therapeutic interventions needed throughout Children’s inpatient units and outpatient oncology clinic. Sometimes the team is brought in to motivate a patient to comply with their

“Having Sven present just helps everyone exhale and release some of the tension.” BRITTA CARR, CHILD LIFE SPECIALIST

Britta Carr and Sven

treatment plan — whether that’s taking a medicine or getting them out of bed to walk or participate in therapy. “The reward of being with the dog can be key to a child’s positive outcome, incentivizing them to do things that might not feel good,” explains Patterson. “When a parent or nurse or child life specialist can’t get a patient to do something, they might do it for the dog.” Another job for Sven is helping young patients through uncomfortable treatments and painful procedures. “Our goal would be that the dog could get up on the bed so the child could be getting an IV in one hand and petting the dog with the other,” says Carr. Carr and Sven also are called in to offer bereavement support in end-of-life situations. Having a dog to hug and pet in those sad moments can be a comfort to siblings, as well as staff. “Staff have hard days,” adds Carr. “Having Sven present just helps everyone exhale and release some of the tension.” Carr says Sven also is great working with children with special needs. The facility dog serves as an “amazing sensory intervention” for kids that can’t communicate verbally. On top of the specific, strategic benefits of having Sven on Children’s team, he also just generally makes the hospital a better, less scary place to be.

“Many children and families are missing their dogs at home, so he normalizes the hospital environment,” says Patterson. “They’re not thinking about being a patient anymore; they’re thinking about being a normal kid.” And, amid a busy day of patient consultations, Sven gets breaks to do what his normal canine counterparts do. That includes some much-needed time alone in a quiet area. The pup also enjoys the perk of seeing a mobile groomer every other week. “Oh, he’s pampered and spoiled,” laughs Carr. The connection between children and canines seems like a natural one, yet the hospital dog concept hasn’t been around for long. “Hospital placement has really been within the past few years, so it’s a fairly new thing nationwide,” says Casto. “It’s catching on, though, because everyone sees the benefits of animal-assisted therapy in health care.” Patterson says different methods of support are especially needed as Children’s patient population grows in size, acuity and complexity. The versatile role Sven plays will be increasingly in demand, as Children’s continually looks to improve the outcomes and experiences of all patient families. “When Sven is around, it completely changes the atmosphere.”

John and Lindsey Elsaesser with their daughters; Ali, 5, Evie, 7, Lyla, 9, and Charlotte the hedgehog

2.2016

JOHN AND LINDSEY ELSAESSER:

The Miracle of It All F

riday night and the Elsaesser house is alight with energy — the output of three jammied sisters and the family’s newest addition: a spiky hedgehog princess who, at present, is being paraded around the living room in a cozy, pink blanket. Bedtime is nearing, normalcy reigns — and that is the miracle of it all. “When I was 12 weeks pregnant, they knew something was wrong with Evie,” Lindsey Elsaesser recalls. She and husband John remember the swirl vividly: the ultrasound that led to an initial diagnosis of type II osteogenesis imperfecta (OI), the lethal form of the brittle bone disease; the unflinching decision to continue the pregnancy; and the realization that their baby girl — and second child — was likely going to die during childbirth or shortly after. “They told us that if she survived delivery, she may have a few minutes or a few hours,” Lindsey says. John adds, “We were preparing ourselves for the worst — but hoping for the best.”

More than seven years later… “Lyla will say, ‘Evie almost died, and God took care of her,’ and Evie will say, ‘He did — He sure did,’” Lindsey says. “It’s one of those ‘hardest things’ that you would do over.” A vibrant testament to the power of hope and faith, innovative treatments and medical expertise, Evie — whose very name means life — is a gift, say Mom and Dad. “She is our happiest kid and she loves a lot,” Lindsey shares. “She loves people. She loves to do stuff, to go places. We were at the pumpkin patch, and she wasn’t just walking through the mud, she was stomping through the mud. She was enjoying it so much I couldn’t even be mad at her.” Born on September 19, 2009 — 6 pounds, 11 ounces and 16.5 inches long — Evie gave her parents (and all of the gathered family, friends and church acquaintances) an hour, then two, then three… The next day — a Sunday — John and Lindsey received the call from their pediatrician: Evie’s heart and lungs appeared to be okay — she was cleared to go home.

John and Lindsey Elsaesser with their daughters: Ali, 5, Evie, 7, and Lyla, 9

“We didn’t even bring a car seat,” Lindsey remembers.

“Without that drug, her bones could have disintegrated,” Lindsey says.

With the exhilarating news came an unexpected and baffling twist — X-rays and other tests were now calling into doubt the initial diagnosis of OI. Clarity would come about two weeks later after seizures triggered a trip to the ER and a series of diagnostic tests.

That drug, Strensiq, was approved by the FDA after Evie’s 6th birthday.

“Thank God for Dr. Lutz,” Lindsey says. Richard Lutz, M.D., a pediatric endocrinologist at Children’s Hospital & Medical Center, made the discovery based on Evie’s blood test results; her alkaline phosphatase level was low, a sign she had hypophosphatasia (HPP), a rare disorder that softens bones and teeth. Dr. Lutz’s research then connected the Elsaessers to a clinical trial for an experimental HPP drug. Evie joined when she was nearly 3 months old.

2.2016

“It went to market, and people are getting better,” she continues. A real fighter, says Dad, Evie still gets Strensiq shots three times a week. She also takes an oral seizure medication, wears hearing aids and a chest brace to address a protruding sternum. She was on oxygen for a time, but not anymore. “Lindsey should get an honorary nursing degree,” says John, who is an operating room nurse with Nebraska Medicine. “I would be working and she would be going to all of the doctor’s appointments. There were some hard times where she would look in the rearview mirror, Evie would be blue, and she would have to pull over.”

Evie sees Dr. Lutz every six months at Children’s, where she has also undergone her series of surgeries. Internationally renowned pediatric orthopedic surgeon Paul Esposito, M.D., has operated on her feet and placed a rod in her right femur. Pediatric neurosurgeon Mark Puccioni, M.D., and Jason Miller, M.D., who specializes in plastic surgery, reconstructed Evie’s once cone-shaped skull to relieve pressure on her brain. “Children’s is a go-to place for Evie,” John says. “Call it a second home if you want.” “She loves it,” Lindsey adds. Mom and Dad love it too, so much so that they have expanded their involvement from longtime patient parents to active members of Children’s Family Advisory Council (FAC). “I feel like we’re at a place where we have a little wiggle room to do things like this. We couldn’t have done it when she was young,” Lindsey says. “We were tired for a lot of years.”

John and Lindsey Elsaesser

John says he was sold on the idea of the FAC as soon as he learned dinner and child care were provided. “It’s like a date night,” he says — with the added benefit of real impact. The Elsaessers say their voice is heard, their input valued. “I just want to have an opinion,” Lindsey laughs. And she and John have given theirs on everything from signage in the hospital and Specialty Pediatric Center — to the need to make the surgery waiting room a little more private to the importance of having a “real” bathroom in each of the Pediatric Intensive Care Unit rooms. “It’s really amazing,” Lindsey says. “They want to know how to make things better.” She and John joined the FAC more than a year ago. They’ve enjoyed meeting an array of staff members, including the present and former CEOs, and learning more about the planned Hubbard Center for Children expansion (which will have actual bathrooms in each of its PICU rooms). Lindsey says, “It gives you a sense that these people really care. They want to see kids get better.” “And as much as possible, make it an inviting and comforting place for parents,” John adds. Extra bonus: “Evie loves the FAC meetings because she gets to go to Kids Camp with her sisters,” Lindsey shares.

“It’s really amazing. Children’s wants to know how to make things better.” LINDSEY ELSAESSER Mother and member of Children’s Family Advisory Council

Evie is in first grade now. Along with her sisters, Lyla, 9, and Ali, 5, she splits time between Trinity Classical Academy on Monday and Wednesday and home schooling on Tuesday, Thursday and Friday. She loves to swim, and even joined the Rockbrook swim team over the summer. “There are points where I want to hold Evie’s hand, maybe there is a puddle or un-level ground, and she’s like, ‘No Dad, I got it.’ She wants to do it herself and show us that she can conquer whatever she puts her mind to,” John says.

2.2016

Evie also enjoys riding her bike, jumping on the trampoline and playing with Charlotte, the spiky princess, a hedgehog and her 7th birthday present. “Evie has a great personality. She’s very straightforward about her health. People ask her what her brace is for and she says, ‘My ribs stick out too far,’ or ‘I have HPP and my bones are soft.’ She’s very secure in who she is,” Lindsey says. “I tell her, ‘God has big plans for you’ because He does.” Mom and Dad say that if Evie can go six months without having a seizure, surgery or other event, they’ll take a little trip, just the two of them. That hasn’t happened yet. But life has reached a level of normalcy that allowed for a family trip to Mount Rushmore in May as well as the Elsaessers' involvement in extracurriculars like the FAC and speaking engagements at American Academy of Pediatrics small group meetings. “It’s been really fun to be part of the hospital and other groups,” says Lindsey, an avid blogger during her pregnancy who now keeps connected to the HPP community through Facebook. “It’s so fun to share her joy.”

This particular day — a Friday — little Charlotte, swaddled in pink, is the focus. Even though she is Evie’s birthday gift, Lyla and Ali are equally enamored. In unison, they discuss the hedgehog’s bath and bathroom habits (which, at times, are intertwined). Mom loves that; she’s learning to be a pet person. One by one, the girls line up and kiss Dad goodnight. “I love you,” they say. “I love you, too,” he replies. Well after lights out, the patter of little feet persists — both Charlotte’s (she can run up to three miles in her wheel at night, the girls share) and at least one of the jammied siblings. “That’s Evie,” John says. And that, again, is the miracle of it all.

The Elsaesser family cuddles up for a story before bedtime.

Lindsey and John also are willing to share their advice to fellow parents of medically complex children; sage words borne of experience: ❱❱ Treasure every moment because even in the bad, there is still good. ❱❱ Nothing is a given. ❱❱ Make things fun. ❱❱ Be positive because your child is listening. ❱❱ Give your spouse lots of grace — and ask how they’re doing. “That meant a lot to me when John would ask,” Lindsey says. ❱❱ Find a church community. ❱❱ Ask for help. People want to help you. ❱❱ Take it day by day.

AMBITIOUS BECAUSE WE CARE

2.2016

Commentary by Richard G. Azizkhan, M.D. President & CEO Children’s Hospital & Medical Center

Back in the 1940s, as a polio epidemic gripped both the nation and the Omaha region, Henry Doorly, then-publisher of the Omaha World-Herald, and Dr. C.W.M. Poynter, then-dean of the University of Nebraska Medical Center, came together with a shared vision for children — what developed into Children’s Memorial Hospital and what has since grown into Children’s Hospital & Medical Center. Henry Doorly and Dr. Poynter were ambitious because they cared. Today, as we navigate a new chapter of growth and embrace an inspiring new vision, we hold on to the same sense of ambition and obligation that fueled our founders. We plan and strive today because the children and families in our care are counting on us to be the best, now and into the future. They deserve our boldest plans and biggest dreams. At the same time, a bold vision is nothing more than a dream if it is not achievable. To that end, we have developed — and are in the process of deploying — a multipronged, 10-year strategy that includes: Providing the safest and highest quality care ❱❱ Children’s is committed to being a high-reliability organization, synonymous with safety. Delivering a remarkable patient and family experience — every time ❱❱ We will nurture a culture of service for every child who needs us, offering our very best every day to design and deliver an outstanding patient experience every time. Advancing education and research ❱❱ Always looking ahead, Children’s will enhance its commitment to providing an outstanding learner experience and continue our push to find new cures and treatments by advancing our groundbreaking Gary A. Perkins Pediatric

Research Institute. In fact, we’re aspiring to become a $100 million a year funded research enterprise over the next 10 years — a ten-fold increase from current funding. Engaging the community to improve the well-being of children ❱❱ We will be an advocate for children’s health by elevating our efforts to engage the community and its policy makers, nurture community-focused health initiatives and strengthen advocacy to influence policy and promote Children’s mission. Growing programs and resources to provide access to every child who needs us ❱❱ To serve more and serve better, we will grow and strengthen targeted, existing programs and services; develop and grow new programs and services; build collaborative partnerships and identify new avenues to increase access and reach. Positioning Children’s to thrive in a changing future ❱❱ Children’s will work to continually frame its future around greater value and growth, being proactive today so we can be successful tomorrow. Strategic plans are critical in communicating, with our team and our community, what we are trying to accomplish — but they fall short without execution. Managing this process will require engaged, compassionate and committed leaders, including our community and academic partners. Today’s Children’s is blessed with willing and eager collaborators and strong foundational elements: compassionate, high-quality people; sound infrastructure; outstanding philanthropy and community support; comprehensive data; and good financial stewardship.

We are born into our times, and we have to take advantage of opportunities to make the most of what we can accomplish. Our vision for the future — just like Henry Doorly’s and Dr. Poynter’s — is ambitious because we care and because it needs to be. We have an obligation to care for children with the most complex and chronic disorders that require special infrastructure and the expertise of our physicians, nurses, pharmacists and support personnel. We have to create a flexible environment that allows us to take advantage of new technologies and approaches. Our expansive and leading-edge Hubbard Center for Children, set to open in 2021, will do all of that while freeing up capacity for continued growth. Some people are motivated by material things. We are motivated by creating a better world for children. I have seen the enormity of the needs of children and their families in many of the places I have lived and worked. You cannot help but be moved by those experiences. Years from now, I want our grandchildren and great grandchildren to have the benefits of a better, more affordable, more convenient health care delivery system and a better health status. Over the next 10 years, we will use the appropriate metrics to monitor our progress so we can make course corrections, accelerate and decelerate depending on where we are. This is a very exciting time for Children’s and I can think of no better team to advance with—from our skilled physicians and researchers to our tireless nurses and administrators, even our valet drivers who enhance the patient experience every day. (In the spirit of pure generosity, they decided, among themselves, to donate all of their tips — more than $3,500 — back to benefit Children’s. Remarkable.) I am energized by the champions for children inside our walls and out in our community. You are important to the organization and to me personally — outstanding because you care. 29

Children’s Honored with 2017 Women’s Choice Award

Children’s Hospital & Medical Center has been named a Best Children’s Hospital by the Women’s Choice Award®, America’s trusted referral source for the best in health care. “Our Best Children’s Hospitals award helps raise awareness of the top quality care offered for children — not only the critically ill — with specialists, services and technologies for their unique needs,” says Delia Passi, founder and CEO of the Women’s Choice Award, and former publisher of Working Woman and Working Mother magazines. “Our goal is to help moms — and parents — make educated, confident decisions about where to take their children for a wide range of health care services.” The list of 54 award winners, including Children’s, represents hospitals that have met the highest standards for pediatric care. “This recognition reflects our commitment to providing the highest quality of care and best experience for the children and families we’re entrusted to serve,” says Richard Azizkhan, M.D., Children’s President & CEO.

2.2016

ChildrensOmaha.org