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Children’s Hospital & Medical Center 2.2015
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Page 1: Spira 2015 2

Children’s Hospital & Medical Center

2.2015

Page 2: Spira 2015 2

Contents

4 Improving Children’s Lives Through Cutting-Edge Research: Gary A. Perkins Pediatric Research Institute

10 Advocating for Medically-Complex Children

14 A Zoo in Your Room: San Diego Zoo Kids Channel Brings a Virtual Zoo Inside Hospital Rooms

18 Where Every Day is New: Children’s Newborn Intensive Care Unit Tackles New Challenges Every Day as a Level IV Unit

22 Cardiac Outreach: Extending High-Quality Care to Children Throughout the Region

24 A Changing of the Guard

Spira

Spira is the biannual magazine of

Children’s Hospital & Medical Center,

8200 Dodge St., Omaha, NE 68114.

[email protected]

SpiraMagazine.org

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A NEW SOURCE OF SUPPORT FOR PATIENT FAMILIES

Children and families living with heart conditions can find information and inspiration on Children’s smallbeats heart blog (smallbeats.ChildrensOmaha.org). The blog is a welcoming, conversational place where Children’s team members share personal experience, professional wisdom and empowering stories from children and families living with serious heart conditions. The conversation continues on an accompanying Facebook page.

The Lionfighters blog (Lionfighters.ChildrensOmaha.org) is for children and families facing childhood cancer. Every day, Children’s caregivers see these families fight the disease like lions — with raw courage and fierce determination. Lionfighters offers professional expertise and real-life encouragement to strengthen them for the fight.

Both blogs feature posts from various medical team members, from doctors and nurses to chaplains and psychologists, as well as parents. Sometimes, connecting with others who truly understand is the best medicine.

You don’t have to be a patient

or family in Omaha — or even in

North America — to benefit from

two online resources pioneered by

the experts at Children’s Hospital

& Medical Center. Through two

blogs, Children’s aims to provide

the knowledge and support that

families crave when facing a life-

changing medical diagnosis.

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“The Institute is committed to pushing the bounds of pediatric medicine to ultimately develop new innovations, treatments and cures — advances that can only come through clinical and basic science research focused on children.”

WILLIAM B. RIZZO, M.D.

Executive Director, Gary A. Perkins Pediatric Research Institute

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IMPROVINGCHILDREN’S LIVES

CUTTING-EDGE RESEARCH

T H ROUGH

Children’s Hospital & Medical Center’s Jessica Snowden, M.D., sees herself, first and foremost, as a pediatrician.

“I just happen to be a pediatrician who works with mice a lot,” she says.

That work — collaborative, continuous and potentially life-saving — is leading to a deeper understanding of infectious disease.

“My focus is on cancer — and on collaboration,” says Don Coulter, M.D., a pediatric hematologist/oncologist at Children’s who also believes in the tremendous power of research partnerships.

“I don’t think researchers should be doing anything in isolation, especially when you’re dealing with diseases in children,” Dr. Coulter says. “We should be working together, as a team, because that’s what these kids and these families deserve.”

Drs. Coulter and Snowden are just two of the physician-researchers pursuing medical breakthroughs at the new Gary A. Perkins Pediatric Research Institute, an organization of clinicians, investigators and educators dedicated to improving the lives of children through innovative research.

“The Institute is committed to pushing the bounds of pediatric medicine to ultimately develop new innovations, treatments and cures — advances that can only come through clinical and basic science research focused on children,” says William B. Rizzo, M.D., Institute Executive Director and Children’s clinical service chief of Inherited Metabolic Disease.

Launched in late 2015, the Gary A. Perkins Pediatric Research Institute was born of a steady and significant growth in research activity at Children’s. In 2008,

approximately a dozen projects were under study with a research budget of $3.5 million. Right now, 155 projects are underway with a cumulative budget of approximately $9 million. By the end of this academic year, that number is expected to approach 200 projects.

To take advantage of current research strengths, the Institute focuses on four key areas of medicine: cancer, cardiac care, infectious disease and rare disease.

“We want to look at issues that are relevant to the lives of actual kids and make them better by working collaboratively with our clinical and basic science counterparts,” says John W. Sparks, M.D., chair, Department of Pediatrics at University of Nebraska Medical Center and Children’s chief academic officer.

G A R Y A . P E R K I N SP E D I AT R I C R E S E A R C H I N S T I T U T E

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The Institute utilizes the clinical resources of Children’s and the University of Nebraska Medical Center (UNMC), as well as UNMC’s established skill in basic science research, epidemiology, genetics, pharmacology and statistics. A long-time partnership with the Pediatric Research Office provides administrative and regulatory support, plus the research nurses and clinical coordinators needed to implement studies. Add to that cooperation with the College of Public Health, which is instrumental in study design, statistical analysis and population-based investigations, and a collaboration with the Munroe-Meyer Institute with its expertise in genetic testing, clinical genetics, child behavior and psychology.

“All of these relationships — and the formalization of the Institute — allow us to pursue funding we couldn’t have pursued before, recruit a broader range of physician-scientists and secure our status as one of the top children’s hospitals in the nation,” Dr. Sparks says.

Dr. Coulter, an Institute researcher, is energized by the potential impact of a recently-launched project; a collaborative, comprehensive research effort with two overarching goals:

❱ Gain a better understanding of disease occurrence and causation in children throughout the state of Nebraska.

❱ Ensure those children and their families — urban and rural — have access to proper health care support services and education.

This particular Institute project was born out of the Pediatric Cancer Research Group, a state-funded initiative to address an alarming occurrence of pediatric cancer in Nebraska. (According to national level data from the Centers for Disease Control and others, Nebraska had the fifth highest incidence of pediatric cancer in 2010 and remained in the top ten in 2012.)

“So, you start thinking about cancer, and then you start thinking about all of the other diseases that we treat at Children’s and UNMC. Where are these diseases coming from? Where are those families and how can we help them?” asks Dr. Coulter.

In addition to collaborating with cardiologists, surgeons and cancer specialists from Children’s and UNMC, and geneticists from the Munroe-Meyer Institute, the research project relies on the expertise of epidemiologists at UNMC’s College of Public Health and scientists at University of Nebraska at Omaha who are proficient in GIS (geographic information systems) mapping.

“If we can find places where any sort of disease happens at higher frequency, we can try to figure out exactly why that’s the case, and we can also make sure that there are support services in place to help people in that community,” Dr. Coulter says.

Project participants plan to release preliminary maps for review by other Institute participants by the end of 2015.

Dr. Jessica Snowden’s research interest dates back to her second year of fellowship when she cared for numerous children afflicted with shunt infections. “I thought, ‘Why don’t we know more about this?’ and realized no one had ever done this kind of research.”

Eight years later, the Institute’s Dr. Snowden is one of the few researchers in the world using an animal model to better understand shunt infections, including how to prevent them and how to more effectively treat patients (optimally without having to remove the shunt).

“The shunts seem to be infected in the same people over and over again, and when they get infected, it can cause learning issues, seizures and a lot of neurologic problems,” Dr. Snowden explains.

In patients with hydrocephalus, shunts are surgically placed to drain excess fluid from the brain. To conduct her research, Dr. Snowden implants, in baby mice, a catheter made of the same material as a shunt. The catheter is then infected with Staphylococcus aureus or epidermidis — the two most common bacteria that infect people.

“We can use this mouse model to see what kind of cells are being recruited into the brain at the time of infection and how those cells are reacting. We also can use the model to test different treatments and do some behavioral studies,” she says.

“All of these relationships — and the formalization of the Institute — allow us to pursue funding we couldn’t have pursued before, recruit a broader range of physician-scientists and secure our status as one of the top children’s hospitals in the nation.”

JOHN W. SPARKS, M.D.

Chair, Department of Pediatrics at University of Nebraska Medical Center and Chief Academic Officer, Children’s Hospital & Medical Center

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She continues, “We’re going to be building new bridges with the genetics department as we work on translating our work into the human realm over the next couple of years.”

Dr. Snowden believes it is absolutely essential that clinical entities like Children’s and UNMC are invested in the research process “because we see how our work is going to translate to a broader scale. We see how my work with mice is going to help the premature baby, born two years from now, have a better outcome.”

Among the other potential breakthroughs currently under Institute investigation:

❱ The use of “microbubbles” as a more effective and less dangerous way to treat blood clots in children (versus traditional blood-thinning medications).

❱ Clinical trials involving new antibiotics, primarily for infections caused by multi-drug resistant bacteria.

❱ A phase II clinical study that could revolutionize the way doctors treat Sjögren-Larsson syndrome (SLS), a yet untreatable, inherited disease. Dr. Rizzo, Institute Executive Director, is considered the nation’s foremost expert on SLS. “Pharmaceutical companies are becoming more interested in rare diseases, and we’re excited about that,” he says.

Funding for the Gary A. Perkins Pediatric Research Institute is derived from multiple sources, including external grants, philanthropic sources (including Children’s Hospital & Medical Center Foundation and University of Nebraska Foundation) and UNMC funds.

At the heart of it all lies a firm belief that the future of pediatrics lies in advancing the field, going to the forefront by developing new therapies, treatments and cures.

“The Institute is the critical next step for a place like Children’s Hospital & Medical Center or UNMC. This is the piece we need to show that we truly are a medical center,” says Dr. Coulter.

INTERNATIONAL IMPACT A native of Nigeria, Stephen K. Obaro, M.D., is working to ensure the Gary A. Perkins Pediatric Research Institute has a global impact. Before coming to Omaha, he trained and worked in West Africa and the United Kingdom. His research efforts take him back to Africa (and diagnostic labs in Nigeria, Kenya, Democratic Republic of Congo and Angola) at least once every two months.

“We set up improved diagnostic labs to understand what is causing serious infection in children and how their bodies are responding,” explains Dr. Obaro. “We use that information to inform companies interested in developing vaccines and provide guidelines on how those infections can be prevented.”

Successes include the generation of an early prevention pneumococcal conjugate vaccine that has the ability to protect against a limited number of pneumococcal bacteria strains. (Pneumococcal bacteria is one of the most common causes of severe pneumonia, as well as ear infection, sinus infection, meningitis and blood stream infection.)

While on location in Africa, Dr. Obaro also studies a number of genetic conditions, including sickle cell disease, and how they contribute to increased susceptibility to different infections.

“From a global perspective, there is a lot that we can learn from developing countries in improving our skill set in clinical care and research and improving outcomes for children.”

Stephen K. Obaro, M.D.

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He led Children’s Hospital & Medical Center with a steady hand and a bold vision, overseeing its evolution from a community hospital to a nationally-renowned, regional medical center. Gary A. Perkins, namesake of the Pediatric Research Institute, retires this year after amassing a 30-year record of accomplishment as the President and CEO of Children’s.

“I’ve always tried to make certain that whatever we did was best for the children,” says Perkins.

The result is a legacy of dedicated service to children’s health, built one milestone at a time, marked by a dramatic expansion in the breadth and depth of care Children’s provides to families throughout the region.

“As a leader in an organization, you have to continue to remake yourself and be a continuous learner. You have to be open to new ideas and opportunities,” Perkins says.

Defining moments abound for Children’s over the last three decades. Above all, says Perkins, was the hospital’s move in 2000 from the north tower of Methodist Hospital into its current, free-standing facility.

“That resulted from a vision, shared among us at Children’s, on the need to grow,” he says. “We’ll always remember the process of moving to the new building and involving a broad base of people from the community.”

“The community was on our side, and we knew we were doing the right thing,” recalls Jere Fonda, a retired Omaha business owner and former Children’s Board member.

In 2007, another momentous accomplishment — the signing of an institutional affiliation agreement between Children’s and the University of Nebraska Medical Center within the department of pediatrics.

“Combining resources allowed us to expand in different specialty areas and recruit specialists we had not been able to bring to the community before,” Perkins explains. “This also brought a new

GARY A. PERKINS: Celebrating a Legacy of Dedicated Service to Children’s Health

“When Gary began working with me and the board, we used to kid about being the best at 84th and Dodge. That’s never where Gary was at. He wanted to be the best in the region, the best in the country, the best in the world.”

DR. KEN BIRD

President and CEO, Avenue Scholars Foundation, Former Children’s Board Member

Gary A. Perkins

2.20158

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focus on how we could work collaboratively to expand research in the area of pediatric medicine.”

A dedicated research focus, says Perkins, will continue to elevate Children’s — and the field of pediatric medicine.

“The Pediatric Research Institute will bring a new level of treatment to the children we serve and contribute to advances in the broader field of children’s health,” says Perkins. “This, I believe, is a key to continuing our progression from a regional medical center to one that has a national presence.”

Over the decades, through times of challenge and change, the quietly confident, collaborative chief executive had one guiding force — Children’s mission: So that all children may have a better chance to live.

“The mission has not only focused me, but I think it focuses everyone who is a part of Children’s,” Perkins says. “The mission of healing children is very compelling.

“As I look at the mission of Children’s, that’s what Gary was all about. He lived it in the organization; he lived it in the community; he lived it in his personal life,” says Dr. Ken Bird, President and CEO of Avenue Scholars Foundation and a former Children’s Board member.

Fonda adds, “You have to ask, ‘Are the children and the families better off today than they were when Gary first took over?’ They are better off. A lot of people will shake Gary’s hand and say congratulations on your retirement. I not only want to shake his hand, I want to say thank you for a job well done. You know children.”

Perkins says he’s looking forward to the next chapter in life — he’s just not sure yet what that next chapter holds.

“I’m starting the fourth quarter of life — and I want to make it a good quarter. I want to continue to be involved. I want to contribute, but I want to have a little bit more latitude than I had in the past.”

1985 Gary Perkins becomes Chief Executive Officer of Children’s Hospital

1987 Children’s installs the first bi-plane heart catheterization lab in Omaha

1996 Children’s Physicians launches, establishing a network of pediatric primary care offices throughout the community

2000 Children’s moves from the north tower of Methodist Hospital into its current, free-standing facility

2007 Institutional affiliation agreement formally signed with the University of Nebraska Medical Center

2009 The debut of a new brand and a new name: Children’s Hospital & Medical Center

2010 Specialty Pediatric Center opens

2012 Children’s designated the state’s only Level II-verified Pediatric Trauma Center

2013 Launch of the state’s only pediatric heart transplant program and the Fetal Care Center at Children’s Hospital & Medical Center

2015 Children’s unveils the Dr. C.C. and Mabel L. Criss Heart Center

Launch of the Gary A. Perkins Research Institute

HOW DO YOU BUILD A LASTING LEGACY? ONE MILESTONE AT A TIME.

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MEDICALLY-COMPLEX CHILDREN

ADVOCATING Two years later, it is still difficult for Wendy Larson to talk about.

“Her breathing started changing. She couldn’t calm down. Nothing we could do would soothe her. Our doctor at Children’s looked at her EKG and said we have to get her to the Pediatric Intensive Care Unit.”

The Larson’s infant daughter, Katelyn, hadn’t been eating well and developed a cough. Then, on that unforgettable August night, an episode of vomiting, profuse sweating and lethargy elevated lingering concern to a local ER visit. An X-ray signaled a possible enlargement of Katelyn’s heart, prompting an early morning ambulance run — 2.5 hours — to Omaha and Children’s Hospital & Medical Center. The Larsons expected to be sent back to Odebolt, Iowa, with an antibiotic; instead they were told their 12-week-old daughter needed a heart transplant.

“It just felt like a tornado,” Larson says. “We were terrified.”

for

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Thirty-five days later, on Sept. 12, 2013, Katelyn became the third child ever to receive a heart transplant at Children’s. “She was so happy that morning,” Larson recalls. “She made eye contact with everyone; she was cooing and laughing. It was like God had given her peace, and it brought so much peace to us. She was comforting us.”

More than two years old now, Katelyn is, in her Mom’s words, a true “overcomer,” an amazing little girl who is doing everything she is supposed to be doing — and more. “We’re so thankful. She has had nothing but outstanding results since we got out of the hospital.”

And even though it is still difficult for Larson to talk about the ordeal, she does. She shares the uncertainty, the pain, the triumph in hopes of improving the quality of life for other medically-complex children and their families. “We’ll do anything to help advocate and give back to Children’s for what it did for us. It’s the least we can do.”

Just last June, the entire Larson family (Wendy, husband Chad, Katelyn and sons Nick and Jake) traveled to Washington, D.C., with Liz Lyons, Children’s government affairs representative, to advocate for children with medical complexity. Lyons travels to D.C. a few

times a year to build relationships with lawmakers, but this was her first time bringing a patient family.

“That was such a gift to be able to go. It was a big deal for our family,” Larson shares. “Connecting with the other parents and seeing other children that are so spunky and full of life, it just takes your breath away. It’s incredibly emotional.”

The visit, organized in conjunction with Children’s Hospital Association, coincided with Family Advocacy Day and included time spent lobbying for the Advancing Care for Exceptional Kids Act of 2015 (ACE Kids Act). The legislation promises to reduce the burden for families of medically-complex children on Medicaid, streamlining and otherwise improving how care is delivered.

“We have a deep and special connection to this group of kids,” says Michael Brown, executive vice president at Children’s. “Many of the needs they have can only be met at a children’s hospital, and being a ‘safety net provider,’ we’re going to take care of them. That frames why this type of advocacy is such a huge priority for us.”

The ACE Kids Act was introduced in the Senate on January 29, 2015, by a group of bipartisan cosponsors led by Sens. Charles Grassley (R-IA) and Michael Bennet (D-CO);

and introduced in the House on January 27, 2015, by a group of bipartisan cosponsors led by Reps. Joe Barton (R-TX) and Kathy Castor (D-FL).

“We want to see this legislation approved before the end of the year,” says Lyons.

Once enacted into law, the ACE Kids Act would:

❱❱ Improve❱coordination❱of❱care❱for❱children❱through❱the❱creation❱of❱a❱nationally-designated❱network❱designed❱for❱and❱around❱medically-complex❱children.

❱❱ Address❱problems❱with❱fragmented❱care❱across❱state❱lines❱(“Every❱state❱has❱its❱own❱Medicaid❱program,❱and❱every❱state❱operates❱its❱Medicaid❱program❱differently,”❱Lyons❱says.)

❱❱ Gather❱national❱data❱on❱complex❱conditions❱to❱help❱researchers❱improve❱treatments❱for❱rare❱diseases.

❱❱ Potentially❱save❱an❱estimated❱$13❱billion❱over❱its❱first❱10❱years❱through❱reduced❱emergency❱room❱visits,❱reduced❱hospitalization❱and❱reduced❱duplication❱of❱care.

“The Act will be really beneficial. Having a less complicated and more streamlined system would be wonderful,” Larson says.

Chad and Wendy Larson spending some special time with Katelyn before her transplant surgery.

2.201512

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Six percent of the children enrolled in Medicaid are considered medically-complex, but they account for 40 percent of pediatric Medicaid costs. Iowa Medicaid covers Katelyn’s ongoing health care needs, including a prescription bill that runs in the tens of thousands of dollars, quarterly cardiac appointments and a yearly biopsy.

While the Larsons are extremely grateful for the financial help, the system does have its frustrations. It can be difficult to navigate. The Larsons’ coverage has been inexplicably cancelled at times, and problems have arisen with out-of-state medical visits. During a Fourth of July trip to Knoxville, Tenn., a suspected case of chicken pox sent Katelyn to the ER twice. “I gave them our insurance, assuming it’s a national coverage program. Then we get home and we get bills in the mail, saying they don’t cover Iowa Medicaid,” Larson explains. “With the ACE Kids Act, it would make it a universal, nationwide network. That would make a huge difference for families. You’re under so much stress and anxiety caring for a child with complex issues. Having ancillary stress is so unnecessary.”

While in Washington, D.C., the Larsons and Lyons met with lawmakers from Colorado, Iowa and Nebraska, including Sens. Deb Fischer (R-NE), Ben Sasse (R-NE) and Grassley, and Reps. Brad Ashford (D-NE) and Steve King (R-IA). “They were wonderful people, and to have them understand the importance of this legislation was amazing,” Larson says. “I think it was really eye-opening for them to hear what families like ours go through, but also to see Katelyn and a beautiful outcome with her.”

Lyons agrees — having Katelyn in Washington, D.C., helped make the group’s time that much more effective. “It was a really big day on the Hill for little Katelyn. She was a trooper,” Lyons shares. “It’s a lot easier to get appointments when you have an adorable 2 year old with you. We instantly had everyone’s ear, and everyone was very receptive, asking a lot of questions about how this would work and where the savings would come from.”

If and when the legislation passes, states would have to opt into the national framework. “Our goal is to not only work within our state but outside of our state as well,” Lyons says. “We would be very interested in seeing all of the regional states — Iowa, Nebraska, Kansas, South Dakota, Colorado, Wyoming — opt in because there is a lot of patient sharing. It’s in the best interest of the kids and their parents.”

Katelyn’s parents say they are extremely grateful for the opportunity to speak for their family and on behalf of families like theirs. “I would have never imagined that we could have anything good come of this, but we have had blessing upon blessing,” Larson says. “Hopefully this will pave the way for other families who are trying to navigate the system to not have the hassle, the headache and the stress that we’ve had to go through, to let that piece be eliminated from their child’s care.”

Ten percent of the patient population at Children’s is considered medically-complex, a designation characterized by:

❱❱ A❱chronic,❱severe❱health❱condition

❱❱ Substantial❱health❱service❱needs

❱❱ Major❱functional❱limitation

❱❱ High❱health❱care❱resource❱utilization

“We think this subgroup of kids needs to be recognized and protected in this changing health care environment,” says Michael Brown, Children’s executive vice president.

Aside from working to optimize legislative opportunities, including the ACE Kids Act, Children’s is working internally to:

❱❱ Define❱metrics❱and❱develop❱a❱database❱to❱track❱them❱in❱the❱hospital❱and❱clinics.

❱❱ Align❱existing❱resources❱to❱develop❱a❱continuum-based❱care❱manager❱program.

❱❱ Develop❱frameworks❱for❱ensuring❱accessible,❱coordinated❱and❱comprehensive❱care.

❱❱ Develop❱a❱standardized❱program❱for❱management❱of❱transitions.

❱❱ Maximize❱reimbursement❱and❱minimize❱cost.

“We are working hard to improve the care for all of our patients, but those that are medically-complex are requiring even better care coordination. We believe the ACE Kids Act would be a giant step in the right direction,” says Liz Lyons, Children’s government affairs representative.

“WITH THE ACE KIDS ACT, IT WOULD MAKE IT A UNIVERSAL, NATIONWIDE NETWORK. THAT WOULD MAKE A HUGE DIFFERENCE FOR FAMILIES.”

WENDY LARSON, MOTHER

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San Diego Zoo Kids Channel

Brings a Virtual Zoo

Inside Hospital Rooms

inYour RoomZOOA

2.201514

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But this two-toed sloth, along with several of her other friends — Tonka, the golden eagle, and Chutti, the greater one-horned rhino, among several others — have been greeting, educating and entertaining patients at Children’s over the past few months.

They all star on the San Diego Zoo Kids Channel, a new closed-circuit television network that launched on Channel 45 at Children’s in June, designed to bring the zoo to children and families who aren’t able to visit in person. The channel broadcasts pre-recorded educational segments and footage of animals at the San Diego Zoo and the project’s partner zoos, including Omaha’s Henry Doorly Zoo & Aquarium, the Los Angeles Zoo, the Denver Zoo and Utah’s Hogle Zoo. It also includes keeper and scientist interviews, the San Diego Zoo’s famous Panda Cam and other live online cameras. The channel also is available at Children’s Carolyn Scott Rainbow House.

“(The Channel) is a slice of life that has nothing to do with a poke or a scan, a doctor or a nurse,” explains Cherie Lytle, manager of patient experience. “It’s an escape, a fantastic distraction and something the kids can look forward to.”

Xena isn’t a visitor most patients would

expect to meet at Children’s Hospital &

Medical Center. She spends more time in trees

than on the ground. She likes to hang upside

down all day instead of stand up straight.

Some of her favorite snacks are tree shoots

and leaves. And Central and South America

feel more like home than Omaha.

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The station debuted at Rady’s Children’s Hospital in San Diego in December of 2013, and has since been installed in 18 facilities, including 11 children’s hospitals and six Ronald McDonald houses across the country. South Dakota businessman T. Denny Sanford provided the initial funding to begin the project, as well as a $7.5 million donation to sustain and develop new programming over the next five years.

Rick Schwartz, ambassador for San Diego Zoo Global, who stars as the “host” in many of the segments, says the team has already produced about 12 hours of original content that loops continuously on the channel, and would like to record an additional 13 hours before the end of the year. Whenever a new segment is available, it is added to the rotation.

The inherent connection between animals and humans — and how that connection can help the healing process — was the impetus for creating a channel about zoo animals specifically for kids at hospitals.

“Our goal is to reconnect people with nature and wildlife,” says Schwartz. “We as humans have that innate connection with animals, but we don’t use it in our daily routine.”

That connection — in a nutshell — makes us happy. According to research conducted by the University of Missouri Veterinary School, levels of the hormone oxytocin increase when humans and animals interact. In addition to improving our moods, this hormone can help people heal and become healthier.

Watching two baby lions play, a porcupine get a check-up or a mother tiger give her baby a bath can distract children in the hospital from discomfort, pain or feelings of fear or loneliness. Perhaps more important, these images bring joy, which is important not only for children staying at the hospital, but also for their entire families.

Grace Jansen, an 8 year old from Gretna, has been in remission from leukemia since last December. But after getting bitten by a bug at camp, she was admitted

to Children’s for a couple of weeks this summer, to ensure the bite didn’t cause too much bleeding or lead to an infection.

It was during that stay when Grace watched the San Diego Zoo Kids Channel for the first time. She remembers watching a segment about a monkey (her favorite zoo animal), and another one about a giraffe. When you’re in the hospital, you can’t go outside and play as much as you can at home, Grace says. So it was fun to have a new activity — especially one that involved animals — to pass the time.

“I just thought it was cool because it was like having a zoo in your room, but you’re watching it,” she says.

If she does have to go back to the hospital, or even just the outpatient clinic, Grace says she is looking forward to watching the channel again.

“Our goal is to reconnect people

with nature and wildlife. We as

humans have that innate connection

with animals, but we don’t use it in

our daily routine.”

Rick❱Schwartz, Ambassador for San Diego Zoo Global

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As her mom, Kelly Jansen, says: “This place is almost too much fun. Sometimes she has so much fun she doesn’t want to go home.”

Patients like Grace, who live in the greater Omaha area, will start to recognize more and more animals from their hometown zoo on the channel during the coming months. A couple of segments for the channel, including one on how to X-ray a giraffe’s teeth and another on how to give a gorilla an echocardiogram, were filmed at Henry Doorly Zoo & Aquarium this summer. Dennis Pate, director and CEO of the Omaha zoo, says he is looking forward to coordinating more videos for the channel at the Omaha zoo, specifically segments that involve the aquarium.

“We are the only member of the group of children’s hospitals involved in this project that has an aquarium,” Pate says. “So we have a unique opportunity to provide aquarium projects.”

As producers continue to create more hours of content, the channel’s developers plan to continue expanding its reach. San Diego Zoo Global, which is overseeing the project, anticipates the channel will be in 40 facilities across 14 states by the end of 2015, and hopes to make the programming available to 250 children’s hospitals across the country over the next five years.

In the meantime, patients at Children’s will continue enjoying the opportunity to learn about what African penguins like for dinner, how much gorillas like to eat their veggies and how macaws communicate with each other as they’re swooping about.

“We’re giving children something that adds to the environment at the hospital — something they can’t have at home,” says Lytle. “If a child has to come back, they can look forward to the opportunity to watch the channel.”

“This place is almost

too much fun.

Sometimes my daughter

has so much fun

she doesn’t want

to go home.”

Kelly❱Jansen, Mother

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CHILDREN’S NEWBORN INTENSIVE CARE UNIT TACKLES NEW CHALLENGES

EVERY DAY AS A LEVEL IV UNIT

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EVERY DAYW H E R E

I S N E W

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Answers.

That’s what Katie Doll began looking for in March, when she found out at a 20-week ultrasound that her daughter, Clara,

would probably not be a normal, healthy baby when she was born.

She remembers thinking: Why me? Why us?

?

??

?

Why my daughter?

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But the questions didn’t stop there. Shortly after finding out Clara would likely be born with some kind of heart defect, Katie developed polyhydramnios, an excessive accumulation of amniotic fluid. This condition led to an early labor at 31 weeks, and ultimately an emergency C-section to stop Clara’s heart rate from skyrocketing.

Tiny Clara Doll was born nine weeks early on May 19 at another Omaha hospital and immediately whisked to that hospital’s Newborn Intensive Care Unit (NICU). The good news was that Clara’s heart — though positioned on the right side of her chest instead of the left — seemed structurally sound. But new problems surfaced. She was having trouble breathing, she had multiple endocrine problems and was starting to develop a distended stomach due to a bowel obstruction.

Clara needed the help of a pediatric surgeon, a cardiologist and a pulmonologist. And there was only one place in the region where she could find all of those things in one place — the NICU at Children’s Hospital & Medical Center.

That’s where Clara was transported on May 29, just 10 days after she was born. Clara grew toenails, took her first bottle and smiled for the first time in Children’s NICU. She has had two surgeries. The first involved removing the bowel blockage. The second involved a tracheotomy as well as inserting a Gastronomy button, or G-button, to ensure she receives enough nutrients as she struggles with chronic lung disease.

And now, Katie and Bob Doll finally have some answers.

Extensive genetic testing, completed in early November, revealed an extremely rare combination of three genetic problems, each of them accounting for a part of Clara’s health issues. While all three issues are serious, knowing what they are will make it easier for doctors to help Clara and her parents manage them.

“She’s a one-of-a-kind baby,” says Dr. Lynne Willett, Children’s Clinical Service Chief for Neonatology. “The chances of

all three of these conditions affecting one baby are infinitesimally small. Even though all these conditions are very serious, we’re hopeful that with time, growth and proper care, she can continue to do better. She has come so far, and the fact that she’s doing so much now is pretty incredible.”

The ability to treat and care for chronically sick babies like Clara, fighting through life-threatening illnesses, is what separates the level of care offered at Children’s NICU from other NICUs in the state and the region. For that reason, families routinely travel from western Iowa, northern Kansas, South Dakota, North Dakota, and even as far away as California, so their babies can be cared for at Children’s.

While babies are commonly admitted to other NICUs because they are born prematurely and need to grow a little bigger or develop a little more before they can thrive on their own, the babies in Children’s NICU need to do more than just grow.

Almost all of the more than 400 babies annually cared for here are referrals from other hospitals, except for the small percentage delivered in Children’s Fetal Care Center, a specialized area equipped to deliver babies who will need immediate access to emergency pediatric subspecialty care. Some of the babies have heart defects

or respiratory distress syndrome. Others need bowel surgery, have low blood sugars or are born with genetic issues. And some, like Clara, are born with highly unusual medical conditions no one has ever diagnosed or successfully treated before.

“What I do right now is like nothing I’ve ever done in my career,” says Dr. Willett. “I don’t know what’s changed over the years, but these kids seem so much sicker and so much more complex than anything I’ve seen before. I’m glad we work as medical teams so we can pool our expertise to provide the best care possible for these rare and highly complex babies.”

Since 2012, Children’s has been the only NICU in the state with a Level IV designation from the American Academy of Pediatrics; this means the unit can provide the very highest level of neonatal care. The department also has the best outcomes for mechanical ventilation and premature babies in the Children’s Hospital National Database, a consortium of 30 children’s hospitals across the country. The pediatric specialists, resources and technology available to the unit, as well as the expert skills of the neonatologists on staff, help Children’s NICU maintain these designations and also make the department a “one-stop shop” for families.

“WE CAN TAKE CARE OF THE FULL GAMUT OF

NEONATAL PROBLEMS, AND PATIENTS ONLY HAVE TO GO

TO ONE PLACE.”

LYNNE WILLETT, M.D.

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“We can take care of the full gamut of neonatal problems, and patients only have to go to one place,” Willett explains.

This unit may appear like other NICUs on the outside. With 36 rooms, the department can care for up to 41 babies, ranging in age from 23 weeks to a year old, at any given time. But a closer look reveals several elements that are unique to Children’s. In addition to neonatologists, neonatal nurse practitioners, nurses and other medical staff, the NICU team includes social workers, lactation consultants, a developmental care specialist, a dietitian and even a chaplain who plays guitar music for babies and their families. Other services that enhance the patient experience include family care meetings led by NICU staff members; a support group led by other NICU families; and NicView cameras, which allow families who are not able to travel to the hospital to see their baby online whenever they want.

Perhaps the biggest measure of success for doctors and nurses, however, are the intangibles — the relationships they have with families, the pictures and cards of gratitude they receive in the mail and the hugs they get from patients and their families at the department’s annual NICU reunion.

“When these babies come here, they are the sickest of the sick, and we have the pleasure of taking care of them and their families,” says Allie Wertz, a NICU nurse who has worked in the department for eight years.

Staff members get to be with babies and their families during some of the most difficult days, weeks or months of their lives. They cheer with them during victories. They cry with them on the hard days. And they rejoice with them over big moments in their lives.

“These nurses have literally been here to laugh with me, cry with me, push me out the door to eat something, and to take care of my little baby for me when I can’t be there,” Katie says.

Lately, the nurses, “good friends” Katie is confident she will keep in touch with for the rest of her life, have been helping her learn how to care for her baby when she goes home — a day that is now in the foreseeable future.

Clara will eventually move from the NICU to a general medical and surgical floor at Children’s, and will stay there for another month before going home so doctors can observe her progress. She still receives oxygen through the Continuous Positive

Airway Pressure (CPAP) machine. And neonatologists continue to monitor a few other issues with her heart, kidneys and bones.

While they take one day at a time, Katie and Bob are eager to bring their baby home before the end of the year. Clara’s “going home outfit” — a spunky, pink dress with flowers and lace — hangs on the end of her bed. She has a new stroller that makes it easy to transport her vent and a special car seat. On the wall of her nursery at home, which she has never seen, hangs a famous quote by William Shakespeare — “And though she be but little, she is fierce.”

Originally penned for Shakespeare’s play “A Midsummer Night’s Dream” in the late 1500s, it is now Clara’s “favorite quote,” perfectly describing her spirit and determination, says her mom.

“Whenever I think she can’t or won’t do something, she proves me wrong every time,” Katie says.

“These nurses have literally been here to laugh with me, cry with me, push me out the door to eat something, and to take care of my little baby for me when I can’t be there.” KAT IE DOLL

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John D. Kugler, M.D., begins a busy outreach clinic day with a pre-dawn chartered flight from Omaha to Rapid City, S.D. Photo courtesy of Omaha World-Herald

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C A R D I A C O U T R E A C H

EXTENDING HIGH-QUALITY CARE TO CHILDREN THROUGHOUT THE REGION

They fan out by air and interstate from “home base” in Omaha, a team of pediatric cardiologists, nurses and cardiac sonographers going the extra mile — or in this case, the extra tens of thousands of miles — to provide high-quality, clinical care to children throughout the region.

“Many families cannot travel great distances for a cardiac clinic visit, and many physicians are less willing to send a patient a long distance for cardiology clinic if they suspect the problem is minor,” says pediatric cardiologist Christopher C. Erickson, M.D., director of Electrophysiology and Pacing, Children’s Hospital & Medical Center. “Providing clinical specialty and subspecialty care in communities across the region is one of the most useful things we can do.”

This concerted outreach effort underscores the commitment of Children’s to meet the medical needs of a broader pediatric population — beyond the walls of the hospital and the city of Omaha. Every two weeks, a cardiologist and a nurse from Children’s fly to Rapid City, S.D., for a two-day clinic. Twice monthly trips are made to Children’s Specialty Pediatric Clinic in Lincoln, Neb.; monthly trips take teams to Sioux Falls, S.D., and more communities throughout greater Nebraska including Columbus, Grand Island and North Platte.

“Cardiology has the largest outreach coverage of any division at Children’s. We see many patients,” says pediatric

cardiologist John D. Kugler, M.D., one of nine pediatric cardiologists in the Children’s travel rotation, along with five nurses.

Echocardiograms are utilized in clinic for front-line diagnoses. After a thorough clinical examination, a plan of care is developed. Perhaps a trip to Omaha for advanced testing or clinical intervention is necessary, perhaps not.

Families are making the most of these unique outreach opportunities. In 2014, 2,089 patient visits were recorded at Children’s-sponsored and staffed cardiac clinics in South Dakota and Nebraska, nearly doubling the number of visits from 2009. More than 420 echocardiograms were performed. During the twice monthly, two-day clinics in Rapid City, S.D., the traveling cardiologist and nurse see an average of 14 patients each day, many from Native American reservations including Pine Ridge.

Beyond the convenience and familiarity the visiting specialists provide families, “the clinics also allow us to maintain face-to-face, personal relationships with the referring pediatricians,” Dr. Kugler says.

Children’s cardiologists strive to keep those referring physicians informed as recommendations are made. They stress this is a team effort focused on taking care of the family.

The same team approach to care extends beyond the periodic clinics. Back in Omaha, another avenue of outreach is utilized almost every day as Children’s cardiologists lend their expertise by interpreting thousands of digitally-transmitted echocardiograms and electrocardiograms from hospitals around the region.

“They are transmitted over the web. We interpret them here and call the results to the ordering pediatrician or neonatologist there,” Dr. Kugler explains.

It’s a collaborative approach that ensures the best possible care for children throughout the region, and the “Children’s way” for more than a decade. For the parents of young patients, the convenience and efficiency of the outreach is coupled with peace of mind.

“It’s rewarding to see parents appreciate that you’re there,” Dr. Kugler says. “It’s rewarding to see patients doing so well because of the efforts of our entire team.”

2009

8052010

11882011

15452012

14452013

15782014

2089Outreach Clinic Patient Visits

OUTREACH LOCATIONS: Columbus, Grand Island, Hastings, Kearney, Lincoln, Norfolk, North Platte, Rapid City, S.D., Sioux Falls, S.D.

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A Changing of the Guard

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Changings of the guard are often bittersweet. Saying hello to “the new guy” means saying good-bye to a predecessor — in this case, a true statesman in pediatric health care, the accomplished and genuinely respected Gary Perkins.

Families throughout Omaha and the region owe Gary a tremendous debt of gratitude, and though he has certainly earned some quiet time on the lake, I know I’ll be tapping his decades of experience and insight as I take the baton and prepare to build upon the great momentum he fostered at Children’s Hospital & Medical Center.

Beyond commending Gary for a career well done, I would like to thank our new community for the warm welcome you’ve extended to me, my wife Geralyn, and our son Aaron — and for the true privilege of leading Children’s and ensuring the safest and highest quality care for all children.

As a father, who is also a physician-executive, I know the special trust parents place in children’s hospitals. I know, too, that treating children involves caring for the entire family; a lesson I learned before cracking my first medical textbook. I recall vividly the instance of a baby girl born with a bilateral cleft lip: how the stress of the situation weighed on mom and dad (both health care workers) and how skilled surgeons provided peace of mind and helped ensure a life of normalcy for my thriving, now 50-year-old sister.

That experience and the pervasive influence of my parents — a doctor-father and nurse-mother — stoked my own desire, at a very early age, to care for others. When I was young, we moved from our home in the United Kingdom to Darjeeling, India, so my parents could work together to elevate that population’s health status. They had a tangible impact on the quality of people’s lives and that resonated powerfully with me.

Since becoming a surgeon decades ago, I’ve been blessed with the opportunity to treat patients and establish centers of excellence around the world. I come to Omaha after spending 17 years at Cincinnati Children’s Hospital Medical Center, one of the nation’s top pediatric institutions. There, I served as Surgeon-in-Chief and Senior Vice President of Surgical Services, heading efforts

to improve quality and safety, recruit the right kind of people and develop institutional health affiliations throughout the world. Prior to that, I led the Department of Pediatric Surgery at Children’s Hospital of Buffalo and helped rebuild an entire health system in post-war Bosnia, a transformational and seminal experience.

All of these experiences have served as building blocks, preparing me for this new role as President and CEO of Children’s Hospital & Medical Center. I am energized by the possibilities and ready to dive into the “Hows”:

❱❱ How❱can❱we❱make❱the❱children❱of❱Omaha❱and❱Nebraska❱❱the❱healthiest❱in❱the❱country?

❱❱ How❱can❱we❱take❱research❱and❱innovation❱to❱the❱next❱level,❱recruit❱the❱best❱talent❱and❱become❱a❱national❱and❱international❱leader❱in❱pediatric❱health❱care?

❱❱ How❱can❱we❱continue❱to❱best❱serve❱a❱growing❱region❱and❱beyond❱—❱and❱what❱is❱the❱physical❱and❱operational❱infrastructure❱needed❱to❱do❱that?

I am excited to engage with our Children’s staff and energize and inspire them to think about their personal impact on health care and the lives of children, as well as the collective impact we have by working together.

I look forward to galvanizing our generous donors and our relationships with key partners and academic stakeholders to accomplish the extraordinary in pediatric health care.

Connecting with our patient families and ensuring they feel warmly engaged and valued in the process as we care for their children is most important to me.

There is a lot for me to learn as I make this transition. Fortunately, I also have a lot of energy, curiosity and enthusiasm. As Children’s and I embark on this new era, I promise to be one of the strongest advocates for the well-being of your children, continuously and relentlessly striving to make “the best place for kids” even better. Your family deserves — and will receive — nothing less.

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

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Children’s Hospital & Medical Center has been recognized as one of the most connected hospitals for 2015-16 by U.S. News & World Report. The U.S. News Most Connected Hospitals list recognizes hospitals whose excellence in patient safety, patient engagement and clinical connectedness improves patient care. Children’s is the only Nebraska hospital on the list. “This honor reflects Children’s commitment to innovation and passion for providing the very best patient experience,” says Mark Stastny, Vice President and Chief Information Officer at Children’s. “Our single electronic health record system improves the safety, quality, efficiency and convenience of care for our patients and families.” The complete list of Most Connected hospitals is available at usnews.com/mostconnected.

Children’s Named One of Nation’s “Most Connected” Hospitals

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ChildrensOmaha.org


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