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HeroesTHE MAGAZINE OF ANN & ROBERT H. LURIE CHILDREN’S HOSPITAL OF CHICAGO

Innovationin diagnosis, treatment, research and access to care

Ann & Robert H. Lurie Children’s Hospital of Chicago J. Christopher Reyes (Chairman, Board of Directors), Patrick M. Magoon (President and CEO) Ann & Robert H. Lurie Children’s Hospital of Chicago Foundation Robert S. Murley (Chairman, Board of Directors) Heroes is published by the Foundation. Erin P. Shields (VP, Communications) Editor Maureen King Contributors Katie Fanella, Dan Kening, Martha O’Connell, Ekaterina Peshava Photography Alyssa Schukar, Mike Tangorra, Jan Terry Design Words&Pictures, Inc.

© 2016 Ann & Robert H. Lurie Children’s Hospital of Chicago. Written requests for permission to reproduce some or all of this publication are welcome. Contact Maureen King at mking@luriechildrens.org.

We respect your right to privacy and will make every effort to remove your name from our mailing list, if requested. To do so, please forward a written notice to Ann & Robert H. Lurie Children’s Hospital of Chicago Foundation, 225 E. Chicago Avenue, Box 4, Chicago, IL 60611-2991 or send an e-mail to foundation@luriechildrens.org.

FEATURES

2 Creating a culture of innovation

3 New attack plan for devastating brain tumors

6 Dream it, do it!

8 New technologies: Safer diagnosis, enhanced patient care

11 Research that improves kids’ lives

12 Datalogging offers snapshot of cochlear implant use

13 Yael’s story: My cool devices

14 Mending broken hearts

16 Listening to patients and families

18 In the News

20 @Lurie Children’s

21 Highlights & Happenings

IN THIS ISSUE

Lurie Children’s is alive with innovative projects and

research to identify ways to better diagnose and treat

patients and enhance patient care.

Heroes

Philanthropic support from generous individuals like you is crucial to Lurie Children’s ability to care for patients and families and relentlessly pursue new treatments and cures.

Lurie Children’s offers a wealth of online content through social media, e-newsletters, blogs and our website, including health and parenting tips. Look for the online icons throughout the magazine for links to related content.

Telecarts in hospitals far away allow Lurie Children’s physicians to share their expertise in diagnosing and treating children regardless of location. Story on page 6.

On the cover: Patients treated for brain tumors, like Kadeen Alansari, are given new hope by the promising research conducted by Lurie Children’s physician-scientists Drs. Rishi Lulla and Amanda Saratsis (right). Story on page 3.

“Innovation distinguishes between a leader and a follower.”— Steve Jobs

In a study piloted by Lurie Children’s surgeons, a handheld scanner—similar to those at your local grocery store—uses white light instead of dangerous ionizing radiation to safely and reliably capture the anatomy of children with chest deformities.

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The spirit of innovation is in the air at Lurie Children’s, where caregivers are focused on finding new ways to diagnose, treat, conduct research and increase access to care for children. In a changing healthcare environment increasingly driven by quality measures and patient outcomes data, caregivers need to seek out new methods—and new minds—for developing game-changing innovations.

Creating a culture of innovation

Lurie Children’s is building innovation infrastructure using techniques borrowed from the business and technology sectors. Plans include:

• Think Tanks involving both staff and outside members from a range of industries

• a studio space for team brainstorming and workshops

• promotion of innovation idea creation and solutions to generate interdisciplinary research

• support for the broad development and implementation of innovative technologies and therapies in collaboration with the Stanley Manne Children’s Research Institute at Lurie Children’s

On a smaller scale, team members of the Lefkofsky Pediatric Intensive Care Unit (PICU) have launched a pilot innovation program called IGNITE. “Chicago is a hub of health care innovation,” says Marcelo Malakooti, MD, a critical care physician and leader of IGNITE. “We wanted to harness some of that energy to engage community and business leaders in generating innovative solutions for improved patient care in the PICU.

Each IGNITE Think Tank event centers on a specific issue, such as how to reduce unnecessary blood transfusions or how to better engage parents in their child’s care. For the Think Tank on blood transfusions,

a diverse group participated, including web designers, advertising executives, accountants and engineers. One of the ideas developed that evening was so strong that it is now being implemented and is already on track to have a significant positive impact on patients.

“I can definitely say that we never would have come up with such a broad range of innovative ideas and solutions on our own,” says Dr. Malakooti. “IGNITE demonstrated that our successes are scalable and can be rolled out across the hospital. We’ll also be able to share our findings and research with other pediatric ICUs. Transforming care and outcomes for kids is our goal.”

Support for innovation initiatives at Lurie Children’s is funded through the generosity of Fred L. “Pete” Krehbiel.

“Creativity is thinking up new things. Innovation is doing new things.”

— Theodore Leavitt

Each year, more than 2,200 critically ill and injured children receive care in the Lefkofsky Family Pediatric Intensive Care Unit from critical care physicians like Dr. Marcelo Malakooti.

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New attack plan for devastating brain tumors

Dr. Lulla tests the strength of 12-year-old Joshua McFadden, treated at Lurie Children’s for diffuse intrinsic pontine glioma.

Pediatric neuro-oncologist Rishi Lulla, MD, MS, and pediatric neurosurgeon Amanda Saratsis, MD, are always saddened when they must share a diagnosis of a high-grade glioma with a family, since they cannot offer meaningful hope of survival to children and teenagers with this condition. High-grade gliomas are among the most aggressive cancers that originate in the brain, with the lowest survival rate among tumors.

But now there is renewed hope, as researchers and physician-scientists at the Stanley Manne Children’s Research Institute of Lurie Children’s and experts from Northwestern University Feinberg School of Medicine are developing new strategies to control these tumors through advanced technologies and epigenetics for patients and families desperate for better treatments.

Drs. Lulla and Saratsis, both assistant professors at the Feinberg School, are part of a new interdisciplinary team of physicians and researchers accelerating research to understand why these tumors form and to create effective therapies.

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Meet Dr. Lulla at luriechildrens.org/lulla

Pushing past barriersTumor tissue samples are key to progress in treating high-grade gliomas. In the past, obtaining biopsies of brainstem tumors was risky for patients and did not change the outcome of their deadly disease, regardless of the pathology results.

However, safer surgical procedures for obtaining tumor tissue and new discoveries from the tissue that inform potential new therapies have been game-changing. These advances launched research into tumor epigenetics, the study of how factors outside the DNA code can cause genes to be switched on or off and affect tumor formation and response to therapy. Improvements in radiographic and MRI imaging allow Dr. Saratsis and her neurosurgical colleagues to perform pinpoint biopsies of tumors, so valuable information can be extracted from tissue samples. Surgical techniques and advanced neuroimaging technology combine to work almost like a highly intelligent GPS system within the brain, making precise biopsies possible with little risk to patients.

“It is so scary to have a needle inserted in your child’s brainstem, so I am amazed by the patients and families who are willing to allow us to obtain tissue samples in order to study their tumor biology. This will help us find more effective treatments and potentially help other children through our research,” says Dr. Saratsis.

Investigators at the Manne Research Institute and the Feinberg School are studying high-grade gliomas on the molecular level to discover precisely why they grow and do not respond to conventional brain tumor treatments. The team is driven to find differences between individual tumors by examining their unique biology.

A “dream team” with one goalThis effort marks a landmark partnership between Lurie Children’s and outstanding basic scientists at the Feinberg School. Six investigators are collaborating to discover improved therapies that may lead to better outcomes for children and teens with malignant gliomas, including longer life expectancies and extended preservation of sensory and cognitive abilities.

Drs. Saratsis and Lulla are joined by an international leader in epigenetics research, Ali Shilatifard, PhD, Chair of Northwestern’s new Department of Biochemistry and Molecular Genetics; C. David James, PhD, Vice Chair of Research and Professor of Neurological Surgery and Biochemistry and Molecular Genetics; Rintaro Hashizume, MD, PhD, Assistant Professor of Neurological Surgery and Biochemistry and Molecular Genetics; and Alexander Stegh, PhD, Assistant Professor of Neurology.

Connecting complementary areas of clinical and translational research expertise, these six experts are examining the process of gene expression in brain tumors and the proteins, enzymes and intercellular signaling pathways that allow unchecked cell proliferation that lead to tumor formation.

New therapies in discoveryDrs. Lulla and Saratsis’s team is already working to secure NIH funding for the group’s research, and to partner with other institutions to initiate clinical trials and study more tumor samples. To qualify for this government funding, the team is building their case with data gathered through their ongoing research, currently supported by philanthropy.

Tumor epigenetics has become a central focus of the group’s research. Part of the team’s investigation is devoted to understanding how specific mutations in the genetic code affect how DNA is expressed.

“Right now, I am analyzing only five tumor cell lines because we have limited funds. But we have the capability to create and study cell lines from each and every patient we treat.”

— Dr. Amanda Saratsis

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Their specific area of focus is the mutation of genes encoding a specific protein that controls gene expression, Histone H3. “We now know that the Histone H3 mutation occurs in the majority of pediatric high-grade gliomas, and may be responsible for tumor development. If we can figure out how the mutation affects glioma cell biology, we can figure out how to reverse its effects,” says Dr. Lulla.

One thing is already apparent: treatment strategies for kids need to be different from adult therapies. In addition to using nanotechnology to detect and treat gliomas, these investigators are working to create new anti-cancer compounds and therapies to control gliomas while minimizing the effect on kids’ developing central nervous systems.

Gene analysis unlocks best therapiesTo delve down deep into molecular mechanisms responsible for malignant glioma formation, sophisticated, labor-intensive analysis of DNA and RNA sequences is performed on each brain tissue sample. The analysis produces enormous amounts of data that must be mined to help pinpoint molecular targets where drug compounds may be able to slow tumor progression.

Speed is paramount: most children do not live more than two years after being diagnosed with high-grade gliomas. “Right now, I am analyzing only five tumor cell lines because we have limited funds. But we have the capability to create and study cell lines from each and every patient we treat,” Dr. Saratsis says. “We want to create a library of tumor genetic profiles to thoroughly understand the process of tumor formation and match each patient with the very best therapies for their individual tumor.”

Lurie Children’s researchers are also considering novel surgical methods to place anti-cancer drugs as close as possible to tumors. Dr. Saratsis is exploring catheter-based delivery of compounds directly into tumors, while members of the research team are studying nanoparticles and intranasal drug delivery for rapid, targeted absorption of compounds into the central nervous system.

Finding better treatments for children with high-grade gliomas will involve successes and failures, but researchers are encouraged by the participation of patients and their families, advanced clinical and research technologies, and their team members whose unique expertise holds part of the answer to arresting these complex malignancies. Investigators are also hoping their research may reveal clues leading to improved treatments for other types of brain cancers.

“We are no longer at a standstill, and we have got to keep this research moving,” Dr. Lulla says.

When Amy and Ed McNicholas’ son John died in 2011 of a high-grade glioma at age 15, they channeled their grief into a commitment to fight pediatric brain tumors by establishing the John McNicholas Pediatric Brain Tumor Foundation. Focused on pushing for advancements in the care and treatment of pediatric brain tumor patients, their ultimate goal is the eradication of pediatric brain tumors.

Raising funds through sporting events, social activities and personal philanthropy, their foundation recently made their most generous philanthropic gift to date: a $500,000 gift to

accelerate the work of Drs. Lulla and Saratsis and their project collaborators.

“We are heartbroken that John lost his battle but his journey revealed there’s a war to be won,” says Amy McNicholas. “This is not just the story of one child. Tomorrow, 10 parents will get the news that their son or daughter has been diagnosed with a brain tumor. And so our journey has evolved from a personal journey for our family to a journey of responsibility. This amazing team’s experience and passion is truly one of a kind, and their work has the potential to translate into real hope for our children.”

“We always want to offer hope to our patient families, and with this condition it’s difficult. That’s why this research is so important.”

— Dr. Rishi Lulla

You can make a difference in the fight against pediatric brain tumors! Help Drs. Lulla and Saratsis get the resources they need by contacting Erin Markuson at 312.227.7324 or

emarkuson@luriechildrens.org.

Drs. Lulla and Saratsis are hopeful that their research on high-grade gliomas will yield clues leading to improved treatments for patients with other types of brain cancers, like Kadeen Alansari, treated at Lurie Children’s for low-grade glioma.

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Dream it, do it!Emergency Medicine physician Dana Schinasi, MD, is enthusiastic about the opportunities presented by telemedicine. “I think we’ve only touched the tip of the iceberg,” she says.

Today, a neurocritical care physician standing at a video monitor at Lurie Children’s conducts neurological assessments of children with suspected brain injuries far away. A cardiologist intently watches a child’s heart beating as an echocardiogram is administered in a remote location. Specialists tele-consult with physicians in Asia and Africa about critically ill children and surgeries. Lurie Children’s radiologists view live feeds of X-rays and MRIs from outlying trauma centers when fast response is critical. Telemedicine is bringing Lurie Children’s medical expertise to children throughout Illinois and around the world.

Telemedicine is the real-time exchange of medical information from one site to another through electronic communications to improve patients’ health. Among the nation’s top-ranked children’s hospitals, Lurie Children’s offers the greatest breadth of telemedicine services to assess, diagnose and treat patients. Currently, approximately 15 programs at 11 sites are already deployed or well into development.

“I think telemedicine is the wave of the future,” says Dana Schinasi, MD, an attending physician in pediatric emergency medicine. “We are extending the reach of Lurie Children’s specialized care to as many kids as possible, assisting other providers and making the most of the opportunity to educate parents and patients about their own care. I think we’ve only touched the tip of the iceberg.”

Virtual doctor visitLurie Children’s caregivers use a range of sophisticated technology platforms and several ancillary medical devices that protect patient data and are appropriate to the care being delivered. Lurie Children’s specialists employ an enhanced teleconferencing system to perform examinations and assessments. At the patient’s

Watch a video about telemedicine, featuring Dr. Schinasi and other physicians, at luriechildrens.org/telemedicine

To support the expansion of telemedicine programs so we can

reach more children with our expertise, please contact

Jenny Grey at 312.227.7279 or jgrey@luriechildrens.org

6HEROES LURIE CHILDREN’S SPRING 2016

remote location, a bi-directional, high-definition camera is mounted on a telemedicine cart at the bedside, which can be equipped with diagnostic devices such as a digital stethoscope and video otoscope. At Lurie Children’s, caregivers view a high resolution video monitor to assess patient status. They have the ability to listen to heart and lung sounds, see the inner ear and ask questions of remote caregivers or the patient. Lurie Children’s physicians can zoom in, magnify or change the direction of the camera as needed.

Patients and families—increasingly from the tech-savvy millennial generation—easily adapt to using familiar devices like iPads and smartphones that allow Lurie Children’s caregivers to monitor patient status and provide follow-up care after hospitalization.

“We are dramatically changing the way our health care is delivered because we can manage our patients more closely and bring greater access to specialty care to children and teenagers throughout the world,” says Katie Bohling, Director of Telemedicine Programs. “Telemedicine also allows us to effectively manage more patients and avoid unnecessary and costly hospital admissions or readmissions.”

International reachPhysicians at Children’s Hospital of Zhengzhou in China’s Henan Province are connected to Lurie Children’s experts for diagnosis, monitoring and inpatient and outpatient consultations. Wide in clinical

scope, the Tier I hospital is the largest pediatric hospital in China. With 2,200 patient beds, it is also an attractive research partner, and discussions are underway with the Stanley Manne Children’s Research Institute at Lurie Children’s about joint research initiatives.

Endless possibilitiesTelemedicine at Lurie Children’s has snowballed, and the possibilities are limited only by the imagination. And Lurie Children’s staff have no shortage of ideas. “We are completely capable of creating these applications—it’s just a matter of getting the equipment and setting up the programs,” says Bohling.

Imagine an eighth grader with a complex medical condition able to accompany his classmates on the annual class trip because telemedicine allows his specialists to monitor his condition. Or a family taking their ventilator-dependent baby home for the first time with real-time support as they transition to becoming primary caregivers. Or a teenager able to spend her final days at home because the hospital’s palliative care team has instant virtual access to support the patient and family with medication adjustments or answers to medical questions.

“Telemedicine will never replace the doctor’s visit, nor should it,” says Dr. Schinasi. “This simply allows us to care for more children in more settings and do more good as we support them through their illnesses. I can’t wait to see what telemedicine can do. If you dream it, you can do it! ”

“Pediatric neurologists at Lurie Children’s will be providing phone consultations and live video consults with critical care physicians at Children’s Hospital of Illinois in Peoria for the care of select patients with neurological symptoms. We are excited about this innovative telehealth collaboration that will expand pediatric neurology resources, improving the care of children in central Illinois.”

— Kay Saving, MD, Medical Director of Children’s Hospital of Illinois in Peoria

Expanding Programs

New applications for telemedicine are constantly being developed. A year into telemedicine expansion, Lurie Children’s operates these programs, among others:

Subspecialty access Children outside the hospital, including international patients, receive improved treatment through coordination with specialists in urgent care, otolaryngology and dermatology.

Neurocritical care Neurocritical care specialists at the Ruth D. & Ken M. Davee Pediatric Neurocritical Care Program share expertise with Rockford Memorial Hospital and Children’s Hospital of Illinois in Peoria to reduce neurologic complications from brain injuries.

Transitional care Better care is achieved through tech connections used for post-hospitalization follow-up, transport team consult and the Almost Home Kids program, which cares for medically complex children outside the hospital setting.

Baby Care Connect Hospitalized moms separated from their newborns can stay at their infants’ bedside virtually via iPads, talking to caregivers throughout the day and participating in daily rounds.

Critical care Pediatric intensivists are available to improve care through consults with patient families.

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New technologies safer diagnosis, enhanced patient care

Lurie Children’s is a leader in researching and using new technologies to diagnose and treat children safely, bringing 21st-century expertise to enhance clinical care and surgery. From a simple handheld scanner to the most advanced robotic surgery system, patients benefit from the safest and least invasive treatments.

White light replaces radiationIn a creative new twist on existing technology, a handheld scanner—similar to the barcode reader at a store checkout—uses white light instead of dangerous ionizing radiation to safely and reliably capture the upper body anatomy of children with chest deformities.

The approach piloted by pediatric surgeons at Lurie Children’s, offers a more convenient, less expensive and safer alternative to traditional CT scans to measure and monitor the degree and severity of chest deformities. Preliminary findings from research conducted through the Stanley Manne Children’s Research Institute of Lurie Children’s show that the radiation-free scanner can reliably capture the abnormal chest shape in detailed, 3-D format among children with sunken chest, or pectus excavatum, a common upper body defect occurring in one of 300

Lurie Children’s patients with pectus excavatum, like 15-year-old Alan Bruner, are being scanned with a white light scanner instead of being subjected to X-rays and CT scans as part of an ongoing clinical trial.

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to 400 children. The approach allows clinicians to track changes in shape, depth and volume as the child ages or as a result of surgery. The white-light scanning protocol is available to Lurie Children’s patients with chest defects as part of an ongoing clinical trial.

Children with chest-wall defects generally undergo repeated evaluations for their chest deformity to monitor how it changes over time as the child grows or following surgery. X-rays and CT scans provide excellent visualization but expose children to ionizing radiation. Repeated exposure to radiation is a health concern in anyone, but can be particularly dangerous in children because their growing bodies may be more vulnerable to the effects of radiation. And because cancerous mutations triggered by too much radiation can take years, even decades, to develop, children exposed to radiation early in life tend to have greater lifelong risk for developing cancer.

First, do no harm“As physicians, our first obligation is to do no harm so we sought a new way to reliably and accurately capture the architecture of the chest wall without radiation,” says study lead investigator Marleta Reynolds, MD, Surgeon-in-Chief at Lurie Children’s and the Lydia J. Frederickson Professor in Pediatric Surgery. “Even technology that’s been around for years can be harnessed in novel ways to make the practice of pediatric surgery simpler and safer.”

For patients like high school freshman Alan Bruner, diagnosed with sunken chest at age five, the innovation is welcome. “Alan has had so many tests over the years, as did his older sister, who also has pectus excavatum,” says his mother Jill. “I’m happy to know an alternative that doesn’t involve radiation will soon be available for all the kids who have this condition.”

Complex procedures, tiny incisionsJust as young patients with chest deformities benefit from safer imaging, patients treated by physicians in the Division of Urology can benefit from leading-edge technology provided by the newest robotic surgery system, the daVinci Xi Surgical System. As one of the nation’s highest-volume minimally invasive urological surgery programs, Lurie Children’s is a referral center for the most complex procedures, with almost 500 robotically assisted surgeries completed over the last 10 years. The newest version of the system brought enhancements that allow surgeons to perform highly complex procedures through tiny incisions, resulting in less pain, a lower risk of infection and less scarring.

How it worksThe robot-assisted minimally invasive approach allows the surgeon to operate with three or four interactive robotic arms while sitting in a nearby video console with hand controls, like a very sophisticated video game. The system translates the surgeon’s hand movements to the robotic instruments. The instruments can move in a tiny surgical area with more precision and greater range of motion than the human wrist.

One of the robot’s arms holds a camera that is lowered through a small incision and lets the surgeon see inside the body in 3D images. The system provides up to 10X magnification, allowing the surgeon to see small structures more clearly than in open surgery, a real advantage when operating on a six-month-old baby.

Pediatric urologist Emilie Johnson, MD, performs robotic surgery at least once each week sitting at this video console, and is leading multi-institutional research to optimize the technical aspects of robotic surgery.

“Even technology that’s been around for years can be harnessed in novel ways to make the practice of pediatric surgery simpler and safer.”

— Dr. Marleta Reynolds

Meet Dr. Johnson at luriechildrens.org/EmilieJohnson

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“With this new system I can offer minimally invasive surgery to children who might otherwise have had no choice but an open surgery approach,” says pediatric urologist Emilie Johnson, MD. What does she like best about the new system?

• “The 3D-HD visualization in the console—the picture is excellent”

• “It has very slim arms, which allow great freedom of movement even with very small patients“

• “The 10X magnification”

• “Everyone in the operating room can see what’s happening on auxiliary screens”

Focus on outcomes data Responding to the dearth of solid outcomes data for robotic surgery, Dr. Johnson is leading a multi-institution collaborative study that focuses on the technical factors that lead to the best outcomes for robotic ureteral reimplantation, one of the most complex surgeries performed by pediatric urologists.

“There’s surprisingly little consensus on the best way to do procedures,” she notes. “Does Surgeon A use this suture here and that suture there? Does Surgeon B cauterize this way or that way? What are the

differences, and can we identify technical choices surgeons are making that are associated with a difference in complications or outcomes?”

Dr. Johnson and her research collaborators want to optimize the technical aspects of robotic surgery to achieve the best possible results. Still, she is the first to say that the reason to choose Lurie Children’s for urologic surgery is that the team provides excellent care regardless of the surgical approach. “This is a wonderful tool we can offer to the children we care for and it allows us to perform complex procedures in a minimally invasive way. But if the robot broke, we would still take great care of kids.”

Dr. Johnson’s research is supported by the Children’s Research Fund.

Dr. Johnson and a colleague position robotic arms for minimally invasive surgery.

Interested in supporting innovation in the divisions of

Pediatric Surgery and Urology? Contact Alexa Lingris at

312.227.7256 or alingris@luriechildrens.org

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RESEARCH THAT IMPROVES KIDS’ LIVES

Keeping preemies safe from deadly diseaseLurie Children’s pediatric surgeon and scientist Catherine Hunter, MD, recently received a National Institutes of Health (NIH) grant supporting her research into a potentially deadly disease affecting premature babies, necrotizing enterocolitis (NEC). NEC is a bacterial infection that causes the intestinal lining to break down. Dr. Hunter calls the devastating disease a “complex puzzle” that only a handful of major research labs are trying to solve. Dr. Hunter hopes the NIH grant will enable her to build upon her earlier discoveries of possible inhibitors to prevent NEC—discoveries that may eventually lead to therapeutic clinical trials.

Mutation unique to childhood kidney cancer discovered A recent study led by Elizabeth Perlman, MD, Head of Lurie Children’s Department of Pathology and Laboratory Medicine, discovered a new genetic mutation, MLLT1, in the most common type of pediatric kidney cancer, Wilms tumor. Dr. Perlman, the Arthur C. King Professor in Pathology and Laboratory Medicine, was first author of the study, published in Nature Communications. The mutations pinpointed in the study may represent new targets for therapies to help young patients with the disease.

Study: Parents in dark about using epinephrine for kids’ food allergies Food allergy affects 8 percent of U.S. children. But many parents don’t recall receiving instructions from their child’s physician on the proper use of an epinephrine auto-injector or the creation of an emergency plan in the case of an allergic reaction. These findings come from a study recently published in the Journal of Allergy and Clinical Immunology: In Practice. “This is potentially lifesaving information, and these points need to be hammered home by the physician at every visit,” says Ruchi Gupta, MD, one of the study’s authors, and a member of the Mary Ann & J. Milburn Smith Child Health Research Program at the Manne Research Institute.

Screening kids with epilepsy for learning and behavioral problems Learning difficulties and behavioral problems during childhood can lead to social and educational issues in young adults with childhood epilepsy, even when their seizures are under control, according to a study led by researchers at the Manne Research Institute. Published online in Pediatrics, the study revealed that other factors—including dyslexia, ADHD and depression—can play a powerful role in social and educational achievement, and underscores the importance of screening children with epilepsy for learning difficulties. The study’s lead author is Anne Berg, PhD, a member of the Clinical & Translational Research Program.

Learn more about the latest research developments at the Manne Research Institute at luriechildrens.org/research

Researchers and physician-scientists at Lurie Children’s are expanding knowledge and advancing cures to make the world a better place for children. Research at Lurie Children’s is conducted through the Stanley Manne Children’s Research Institute.

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When Beth Tournis, an audiologist in the Cochlear Implant Program at Lurie Children’s, recently asked a patient how his cochlear implant system was working, the boy cheerfully replied, “Fine.” Born with hearing loss in both ears, he had undergone implantation surgery at the hospital on his right ear at age 5 and on his left ear at 13.

Datalogging offers snapshot of cochlear implant use

Using a technology called datalogging, Beth downloaded directly from the processors he wears behind each ear to her computer a detailed record of her patient’s usage, and a different picture emerged. The small magnetic coil on the left side of his head, which transfers digital information from the processor to the implant, was frequently slipping out of position, affecting his ability to hear.

“This poor kid had been walking around having to reposition the coil an average of 120 times a day, but never told anyone,” says Beth.

She was able to strengthen the magnets for both transmitter coils, which drastically reduced the number of daily “coil-offs.”

“Before this technology became available in 2014, we might never have known he was having a problem,” says Beth, who presented a study on the effectiveness of datalogging at an international conference in France last year.

Datalogging offers many benefits for cochlear implant patients at Lurie Children’s, which has one of the largest pediatric programs of its type in the United States, and was among the institutions consulted during the new technology’s development. The Cochlear Implant Program is led by founder and medical director Nancy M. Young, MD, the Lillian S. Wells Chair in Pediatric Otolaryngology who has performed more than 1,400 implant surgeries.

“Sometimes a patient may turn his or her implant off at school and then turn it back on at home,” says audiologist Denise Thomas, Clinical Coordinator of the Cochlear Implant Program. “Mom and Dad may be none-the-wiser, but we can tell. It has really helped us in having conversations with families about their child’s progress.”

Lurie Children’s Cochlear Implant Program is supported, in part, by the Foundation for Hearing and Speech Rehabilitation. Visit fhsr.org.

By downloading data directly from patient Jose Medina’s cochlear implant processor, Lurie Children’s audiologist Denise Thomas can get a detailed “snapshot” of how he uses his device.

Watch a video interview with cochlear implant surgeon Nancy M. Young, MD, on how implants are transforming the lives of children with hearing loss at luriechildrens.org/young

Datalogging technology lets audiologists:• Track listening time

• Ensure equipment is working properly

• Check correct program is being used

• Monitor frequency of “coil-offs”

• Measure usage in different listening environments

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Innovations in wireless streaming technology offer a number of benefits to children and adolescents who have undergone cochlear implantation at Lurie Children’s. Yael, a Chicago area eighth-grader, explains how this wireless technology has changed her life since being trained in its use by her audiologist.

Yael’s story: My cool devices

“I was born with hearing loss, and underwent cochlear implantation surgery on my left ear in July 2015. Since receiving my implant, I’ve enjoyed using some of the new wireless streaming devices in school, at home listening to music, at karate lessons and with my cell phone.

One device is called a Mini Microphone or ‘Mini Mic,’ which transmits sound from the person speaking into it directly to my implant’s processor via wireless technology. This has opened many doors, and allows me to better experience the hearing world.

One thing that hearing people take for granted is easy access to music. Before my implant surgery, I had two hearing aids and used delicate ‘hooks’ instead of ear buds to listen to music. They were awkward to use. Now I just plug an audio cable from my Mini Mic into my iPad and I can listen to Selena Gomez or Adam Lambert wire-free.

I have also used the Mini Mic in my karate classes. The gym is really echoey, so using the Mini Mic makes it easier to hear the instructor.

The Mini Mic has made a real difference in classroom situations, where a teacher can clip it to the top of a shirt or blouse. This is especially helpful in loud classes. The sound is so clear, and it’s easy to use in work groups and student presentations, too. My principal even wears it at assemblies!

Another cool device is my Phone Clip, which helps me when I receive a call on my cell phone. After the initial pairing of the Phone Clip to my phone via Bluetooth®, now all I need to do to answer a call is to click one simple button and the audio is sent directly to my implant.

I’m so grateful for the technologies that have helped me in so many ways, and I’m super excited to see which new advances come out next!”

“Using some of the new wireless streaming devices allows me to better experience the hearing world.”

— Yael, age 14

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Can you mend a broken heart? Poets, writers and philosophers have long pondered the question. According to Conrad Epting, MD, a cardiac and pediatric critical care specialist at Lurie Children’s, the enthusiastic answer, biologically speaking, is: “yes, we can.”

Mending broken hearts: cutting-edge research finds clues to regenerating failing hearts

“Many animals retain the ability to regenerate damaged heart tissue,” says Dr. Epting, whose research lab is studying the regenerative properties of cardiac stem cells. “It is largely a question of development, age and reprogramming.”

His research, conducted through the Stanley Manne Children’s Research Institute at Lurie Children’s, is informed by patients in the hospital’s Regenstein Cardiac Care Unit (CCU) and Lefkofsky Family Pediatric Intensive Care Unit. The CCU is the hub of Lurie Children’s Heart Center, whose cardiovascular-thoracic surgeons perform 450 heart surgeries each year, and boasts one of the nation’s best survival rates for corrective surgeries and heart transplants.

Dr. Epting says there are a number of challenges in treating children with progressive heart failure due to congenital heart disease. After undergoing surgery, many of these children will grow up to be healthy adults. However, children born with only a single

ventricle (the heart’s main pumping chamber) or cardiomyopathy (an abnormal heart muscle) often develop progressive heart failure.

“As teenagers and young adults, many will experience decreased quality of life, and over a third will suffer premature death or the need for a heart transplant,” says Dr. Epting.

Turning back the clock: Epigenetic regulation

But what if cardiac stem cells could be reprogrammed to rebuild the damaged heart? According to Dr. Epting, zebrafish, which share many of the same genetic building blocks for heart development as humans, can repair the heart throughout their lifetime. However, in mice and humans, the “on” switch that enables stem cells to rebuild damaged heart tissue is switched “off” near the time of birth.

Watch a video profile of Dr. Epting at luriechildrens.org/epting

Conrad Epting, MD, hopes that children like Meadow Herman, who was born with congenital heart disease, will one day benefit from research which harnesses the regenerative properties of the heart.

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Scientists have discovered that stem cells taken from younger patients, or those exposed to chronic heart failure, have better regenerative properties. Dr. Epting believes that epigenetics—the process by which modifications to histone proteins help turn genes on or off—regulates the processes common to development, aging and our response to stress.

“Stem cells exposed to heart failure grow much better than cells taken from a healthy heart,” says Dr. Epting. “There are also more of them, and they show signs of being more youthful, as if stress reverses aging. Being exposed to chronic heart failure somehow switches back on the heart’s developmental program to stimulate repair. By understanding this process, we may find a way to ‘turn back the clock,’ and trigger the heart to mend itself.”

Dr. Epting says that scientists used to believe that aging was just the accumulation of DNA mutations. “We now understand that aging reduces our ability to engage the youthful program because of epigenetic modifications,” he explains. “Learning how to reactivate this program will be one key to developing therapies that can heal the heart from within.”

Banking for the future of congenital heart disease

Dr. Epting developed the Lurie Children’s Cardiac Biorepository, saving excess tissue samples from more than 500 patients. He hopes this unique resource will stimulate translational research across the Heart Center. More recently, Dr. Epting pioneered the Fontan Futures® Initiative, the only program of its type in the United States. This program would enable expectant parents of babies diagnosed with only one ventricle to “bank” both stem cell-rich umbilical cord

blood and atrial tissue from their baby’s heart. These would be frozen through the Mathews Center for Cellular Therapy at Northwestern Medicine on behalf of these children. “If heart stem cells can be saved during infancy when they are the most numerous, it may be possible to use these cells later to help these patients recover from heart failure by rebuilding their hearts using their own stem cells,” says Dr. Epting.

Dr. Epting’s research program is the only one in the country studying pediatric heart failure from an epigenetic perspective. His team is now collaborating with Ali Shilatifard, PhD, Chair of the Department of Biochemistry and Molecular Genetics at Northwestern University Feinberg School of Medicine, and an internationally recognized pioneer in epigenetics.

Philanthropy matters

Philanthropy has been instrumental to Dr. Epting’s research and the Lurie Children’s Cardiac Biorepository. Such support has made it possible for him to apply for funding from the National Institutes of Health and American Heart Association to further his lab’s discoveries.

“As a clinician, treating children with heart failure remains one of the biggest challenges we face,” he says. “By continuing our basic research with translational implications, I’m hopeful we can contribute to improving the lives of children struggling with heart failure.”

Dr. Epting’s research is funded by the Deitrich, Gadient and Rushmore families, the John and Lillian Mathews Regenerative Medicine Endowment, the Children’s Heart Foundation and the Mend a Heart Foundation, among others.

To help support Dr. Epting and his team as they strive to find better

treatments for children with heart disease through research, please

contact Thomas Johnson at 312.227.7251 or thjohnson@

luriechildrens.org to learn more.

Age

Number + function of stem cells

Stem cells help rebuild the heart

Within days of birth, the “on” switch that enables human cardiac stem cells to proliferate and rebuild the heart is switched “off.”

Plan to make a differenceThe late Carolann and Roger Alberico wanted to show their gratitude to Lurie Children’s for a nephew’s care and to recognize the hospital’s dedication to research. They chose to make a generous gift through their estate.

If you are interested in giving a set dollar amount or percentage of your estate to support the mission of Lurie Children’s, the wording in your will or living trust for an unrestricted gift would be as follows:

I give {dollar amount, desired percentage or “the rest, residue and remainder of my estate”} to Ann & Robert H. Lurie Children’s Hospital of Chicago, an Illinois not-for-profit corporation, located at 225 E. Chicago Avenue, Chicago, Illinois, to be used to support its mission.

For more information, call Rich Goode at 312.227.7310, or visit luriechildrens.planyourlegacy.org

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Lurie Children’s has a long history of providing patient- and family-centered care, and over the years has created programs to facilitate input and engagement from those served by the hospital. Most notably, the Family Advisory Board and the Kids Advisory Board enable patients and parents to play an essential role in driving innovations that shape the patient and family experience at Lurie Children’s.

Going to the source: listening to patients and families

Insights from parents

The Family Advisory Board, currently led by parent Erika Holliday, was established in 1992 to recognize the partnership between parent advisors and hospital leadership. Comprised of parents whose children receive ongoing care across multiple services, the board members work with hospital staff to help shape practices, programs and policies for achieving patient- and family-centered care and service. Meeting monthly, the group of 12 members discusses or reviews plans on hospital initiatives as wide-ranging as online bill-paying procedures, telemedicine programs or new quality and safety initiatives.

One care initiative currently being implemented across the hospital received formative feedback from both the Family Advisory Board and the Kids Advisory Board. The Poke Plan is a written plan in the patient’s electronic medical record that provides preferences and choices for any type of “poke,” including blood draws, IV starts, immunizations and port access. It was developed through an interdisciplinary

collaboration led by the Child Life department in consultation with Mott Children’s Hospital at the University of Michigan. The Poke Plan is a way to make necessary pokes less painful and anxiety-ridden for patients by honoring their preferences for comfort measures and pain management, right down to specifying the size of the needle and favorite videos for distraction.

“I loved having the opportunity to help develop the Poke Plan because it directly affects my daughter,” says Linda Sordilla, Family Advisory Board member and mother of 7-year-old Eva, who has been treated at Lurie Children’s for multiple congenital anomalies, including tethered spinal cord, since she was two days old. “A child who needs her blood drawn is stressed, and it really helps make the appointment go smoother when the staff knows her preferences in advance.”

The Poke Plan for Kids Advisory Board member Katie Palermo notes her preference for having her hand numbed before infusions.

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The E-advisor community

Another recent innovation to secure input from patients and families is the formation of an online community known as the E-advisors, who accept invitations to review draft materials, such as frequently used medication handouts from the Emergency Department, and then provide feedback by responding to brief surveys. “This is a great way to get useful information efficiently from as many families as possible in the way that’s most convenient for them,” says Barbara Burke, Senior Director of Patient-Family Experience in the Center for Excellence at Lurie Children’s and the staff liaison to the Family Advisory Board. “We make changes based on the feedback received, and then we can literally put the ‘family stamp of approval’ on it.”

Patients—the most important stakeholders

The Kids Advisory Board represents the most important stakeholders of all: the patients. Since 2006, the group, similar to a “student council” from diverse backgrounds and medical experiences, has been providing invaluable feedback on care and facilities to hospital leadership and clinical staff. During the design and planning phases of the Lurie Children’s facility, the Kids Advisory Board gave critical feedback about many aspects of design. They identified the need for “destination spots” that kids could visit during long hospitalizations, resulting in the gardens on the 11th floor, as well as the hair salon in the Family Life Center.

In monthly meetings, the group shares their perspectives with hospital leaders, front-line staff and consultants on such topics as “green” hospital initiatives or patient safety measures, proposed Family Life Center activities and the hospital’s food service menu. They also meet once a year with the Chief Residents and representatives from each resident class to share the patient side of medical interactions, with insights that help inform the residents.

“When you go right to the source—your patients—you get honest, constructive and timely feedback,” says Lisa Mulvaney, Creative Arts Program Coordinator and the staff liaison to the Kids Advisory Board. “The kids have things to say, and they take their responsibility to represent patients seriously.”

The kids go to Washington

The Lurie Children’s Kids Advisory Board doubles as the Chicago chapter of the International Children’s Advisory Network (iCAN), which was formed to bring together youth members and their parents from around the world to share their experiences and engage with world leaders in medicine, research, innovation and advocacy. Last summer, two members of the Kids Advisory Board traveled to Washington, D.C., with their parents and Susanna McColley, MD, Director of Clinical and Translational Research at Lurie Children’s, to an iCAN conference. There, they met with researchers and regulators seeking feedback and advice from children and their families on pediatric issues.

Whether discussing the food served in the hospital cafeteria or federal research policy, the Family and Kids Advisory Boards provide valuable feedback to continually advance pediatric medical care.

Kids Advisory Board member Maddie Bertrand accompanied Dr. Susanna McColley to Washington, D.C. last year to meet with researchers and regulators.

Members of the Family Advisory Board, including Linda Sordilla, (back row, second from left) play an essential role in shaping the patient and family experience at Lurie Children’s.

Partner with us.

Becomean E-advisor

Are you a Lurie Children’s parent? We invite you to join the E-advisors community, providing feedback through brief online surveys that help us improve the care and services you experience.

To join, email bburke@luriechildrens.org.

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IN THE NEWS

Lurie Children’s is one of only 12 children’s hospitals nationwide—and the only one in Illinois—to be recognized as a “Top Hospital” for patient safety by the Leapfrog Group, a national consortium of healthcare payers that promotes “leaps” in patient safety. This award is widely acknowledged as one of the most prestigious distinctions for any U.S. hospital.

Based on a survey that measures performance on patient safety and quality, this award focuses on three critical areas of hospital care: patient outcomes, resource use and management practices established to prevent errors.

“This is a great accomplishment for our hospital and the result of our deep commitment as an organization to patient safety and quality improvement,” says Patrick Magoon, Lurie Children’s President & CEO. “The award acknowledges that Lurie Children’s has lower infection rates, better outcomes, decreased length of stay and fewer readmissions than other children’s hospitals.”

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OF NOTE For the latest Lurie Children’s news, visit luriechildrens.org

In January, Town & Country Pediatrics became the first privately-owned pediatric practice to become a part of Lurie Children’s medical center. It is now called Lurie Children’s Primary Care – Town & Country Pediatrics. The two organizations have been closely aligned for decades, and Town & Country’s 20 board-certified physicians

are all on the hospital’s staff. “This more formal alignment will enable us to continue to develop a platform for a regional healthcare network solely focused on children,” says Monica Heenan, Lurie Children’s Senior Vice President and Chief Strategy Officer.

Sandeep K. Narang, MD, JD, recently joined Lurie Children’s faculty as Division Head, Child Abuse Pediatrics and Associate Professor of Pediatrics-Child Abuse at Northwestern University Feinberg School of Medicine. Dr. Narang was previously at the University of Texas Health Sciences Center—San Antonio, where he was an Assistant Professor of Pediatrics, an Attending Physician in the Division of Child Abuse Pediatrics and Director of the Child Abuse Fellowship. Dr. Narang is a former U.S. Navy trial attorney.

Lurie Children’s is the first children’s hospital to become a member of the Global Alliance for Surgical, Obstetric, Trauma, and Anesthesia Care. The advocacy-based alliance is made up of more than 50 international member

organizations. Its members are dedicated to building public policy priority for surgical care around the world, and supporting increased access to safe, essential surgical, obstetric, trauma and anesthesia care for all.

Lurie Children’s has partnered with the largest pediatric hospital in China, the 2,200-bed Children’s Hospital of Zhengzhou, to provide a variety of clinical and training services. These include a leader training and education program, telemedicine consultation services in several specialties, a patient care program for patients traveling to Lurie Children’s, and guidance on the development and expansion of the Chinese hospital’s research program.

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David: “So awesome! The Blackhawks have demonstrated off the ice how important their fans are and how they can touch the hearts of our children!”

Donna: “He certainly made the day for many of our patients on the 20th floor. THANK YOU for a wonderful visit.”

Andie: “Great guys off the ice too. So nice for the kids to have some Hammer time!!”

Lois: “This is so heartwarming.”

Kathleen: “Nice to see athletes who take their time to give back to the community and positively enhance the lives of these kids.”

See more photos of the Chicago Blackhawks visit at luriechildrens.org/blackhawks

Thanks to Chicago Blackhawks player Niklas Hjalmarsson for spending his time off the ice visiting with hockey fans at the hospital yesterday! You made our kids’ day.

@LurieChildrens

Stories that got our online audience buzzing

A Visit from the Blackhawks!

Be part of the buzz! Join our online community.

A blog for every interestSalubrity “What You Need to Know About Zika Virus and Microcephaly”

The World Health Organization’s recent announcement of a public health emergency of international concern has many people searching for information on the Zika virus. Larry Kociolek, MD, attending physician in the Division of Infectious Diseases at Lurie Children’s, explains the virus and microcephaly.

Learn more about the concern for risk in pregnant women and how you can prevent contracting the illness at luriechildrens.org/zikavirus

Use social media for goodSign up as a Lurie Children’s Social Media Ambassador to help spread the word about the hospital’s life-saving mission through your social media profiles. Learn more at luriechildrens.org/socialmediaambassadors.

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Climbing high to Step Up for Kids On January 31, more than 3,000 Lurie Children’s supporters participated in the 19th annual Aon Step Up for Kids presented by KPMG stair climb to the top of the 80-story Aon Center. Steppers and event sponsors combined to raise more than $650,000 for K.I.D.S.S. for Kids, an Affiliated Organization of Lurie Children’s, and the hospital’s Family Services Department.

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Pro Am set to swing into actionThe 56th annual Lurie Children’s Pro Amateur Golf Championship, the nation’s second-oldest Pro Am, will tee off on June 27 at the Onwentsia Club in Lake Forest. An integral part of the Pro Am experience, the Dinner on the Bluff at Shoreacres in Lake Bluff will kick off the festivities the night before. Proceeds from this year’s event will support the Founders’ Board’s $2.5 million commitment to fund an endowed chair for the Division Head of Pediatric Surgery. For more information, visit luriechildrens.org/proam.

Dancing for those who can’t Thanks to the efforts of 424 dancers, generous sponsors and over 100 volunteers, more than $370,000 was raised for Lurie Children’s at the eight-hour CHICAGO Dance Marathon on February 20. Held at the Chicago Marriott Downtown Magnificent Mile, the seventh annual event was presented by Solstice Mobile, and featured personal stories from more than 20 participating patient families to inspire the dancers.

Save May 15 on your calendar for the 12th annual Move for the Kids 5K Walk/Run, presented by C.H.Robinson, at Soldier Field. Join or form a team to participate at this festive, family-friendly event in support of Lurie Children’s. To date, proceeds from the race have raised nearly $3 million for the more than 173,000 children and families cared for at the hospital each year. For more information, visit luriechildrens.org/moveforthekids.

Lace ‘em up for Move for the Kids

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PAIDChicago, IL

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Connect with Lurie Children’s:

225 E. Chicago Avenue, Box 4Chicago, Illinois 60611-2991Address Service Requested

Be on the lookout!Lurie Children’s will have a fresh new look to its brand.

Look for us in June on billboards, in bus shelters, on websites and radio, throughout the Chicago area.