STORIES magazine, For Friends of Duke Children's, Summer 2019

KEEPING KIDS SAFE // 12 ENDING DISEASE WHERE IT BEGINS // 14

For friends of Duke Children’s // Summer 2019

THE HEART OF THE MATTER // 21

Soaring to New Heights Complex Care

Special program offers support, better-integrated care for children

Young dancer conquers rare, debilitating disease

182,000

2

Duke Children’s STORIES

the number of preemie diapers used each year by Duke Children’s

SUMMER 2019

For most of his life, Clark Eselgroth dreamed of becoming a professional dancer. That dream was nearly sidelined after being diagnosed at age 10 with a rare inflammatory bone condition. Suffering with debilitating pain, he could barely walk at times. But with ongoing care at Duke, Clark, now 16, is managing his chronic disease wonderfully, and his dancing dreams are well within reach. Read Clark’s story on page 6.

Children with medical complexity—those with a number of serious chronic conditions and who spend a lot of time hospitalized—often receive fragmented care. However, a special program at Duke offers families the integrated care and personalized support that they need. Learn more about this incredible program on page 16.

Theresa Cromling is a shining example of a nurse who has gone above and beyond to care for children at Duke and in the local community. A leader with Safe Kids Durham County, Theresa has worked for years to educate families on ways to stop preventable injuries. Her story starts on page 12.

These are just a few of the inspiring people and programs featured in this issue of Stories. I hope you enjoy reading them all and have a wonderful summer.

Because nothing matters more,

Chair, Department of Pediatrics Physician-in-chief, Duke Children’s Publisher Amy Deshler Editor Bernadette Gillis, bernadette.gillis@duke.edu

2 6 12

14

NEWS

Recent headlines and announcements

SOARING TO NEW HEIGHTS

Dancer Conquers Debilitating Disease SAFETY FIRST

Duke Nurse Making a Difference in Kids’ Safety PROJECT HOPE 1000 Study Aims to Improve Health for Moms and Babies

16 21 25 26

COMPLEX CARE

THE HEART OF THE MATTER

ANN M. REED, MD

Duke Children’s Stories is published by: Duke Children’s Development Office 710 W. Main Street, Suite 200 Durham, NC 27701

A newsletter for friends of Duke Children’s

Writers Lindsay Gordon-Faranda, Rebecca Guenard, Aliza Inbari, Whitney J. Palmer, Miriam Sauls Designer/Art Director David Pickel Photographers Alex Boerner, John Hansen, Chris Hildreth, Brian Mullins, Les Todd, Shawn Rocco, Jim Wallace

Produced by Duke Health Development and Alumni Affairs ©2019 Duke University Health System. 9643

OVER THE EDGE

BOUNCING ALONG

CONTENTS

letter from the chair

Dear Friend of Duke Children’s,

NEWS

Project ADAM’s first N.C. affiliate established at Duke

A

ALEX BOERNER

life-saving program that helps to prevent sudden cardiac arrest in children and teens is now available in North Carolina.

Duke Children’s has become the first North Carolina affiliate for Project ADAM (Automated Defibrillators in Adam’s Memory), a nonprofit organization dedicated to establishing

2

Duke Children’s STORIES

Topping Off Ceremony Marks Bed Tower Milestone comprehensive defibrillation programs in schools across the country. The program’s mission is to reach out to schools to ensure that automated external defibrillators (AEDs) are installed and that staff, faculty, students, and families are trained how to use them and to perform CPR. As a Project ADAM affiliate, the Duke Pediatric and Congenital Heart Center will provide the foundation for schools throughout the state to achieve the Heart Safe School designation by preparing schools for a cardiac emergency through the implementation of emergency response plans, staff CPR and AED training, student CPR education, and sudden cardiac arrest awareness education.

Duke University Hospital and Duke Health leaders, team members, and community partners gathered April 2 to celebrate a construction milestone for one of Duke Health’s latest growth projects. Team members added their signatures to the final beam of the new bed tower addition, which is set to open

in 2021. The 350-bed tower will upgrade, but not expand, the hospital’s current bed count. The lower four floors of the 11-story tower will be dedicated to children’s inpatient services. These units will be designed to provide an enriched and family-centered healing environment.

New Chief of Critical Care Medicine Named

A Rotta

lexandre T. Rotta, MD, FCCM, was recently named chief of the Division of Critical Care Medicine in the Department of Pediatrics.

Rotta was previously the Linsalata Endowed Chair in Pediatric Critical Care and Emergency Medicine and chief of the Division of Pediatric Critical Care at Case

Western Reserve University School of Medicine. He also served as interim chief of the Division of Pediatric Emergency Medicine at the Rainbow Babies and Children’s Hospital in Cleveland.

“Dr. Rotta’s impressive strengths as a clinician, researcher, educator, and mentor make him the ideal leader for our Division of Pediatric Critical Care Medicine, and we are fortunate that he will be serving in this new role in the department,” says Ann M. Reed, MD, chair of the Department of Pediatrics.

Duke Pediatrics Ranks Second in Research Funding

T

F

Above, young adult cancer patient Shannon Voelkel (right) with her mother Mary.

Below, patients David Owens (left) and Logan Cutright attend the event celebrating the donation from First Citizens Bank and Teen Cancer America.

CHRIS HILDRETH

irst Citizens Bank and Teen Cancer America have pledged $400,000 to support Duke’s Teen and Young Adult Oncology (TYAO) program. The funds will help support staffing for a medical family therapist, patient navigator, and psychologist. Funds will also support teen- and young adult-focused activities and a patient-centered model of care.

“Oftentimes when a teen is diagnosed with cancer, he or she may feel isolated and displaced,” says Jeff Ward, Teen Cancer America board member and chief strategy officer with First Citizens Bank. “The TYAO program at Duke addresses these challenging feelings and others on a one-on-one basis and also in group settings. This gift will go far to enhance and expand activities at Duke supporting young people with cancers.”

Following in the footsteps of the successful U.K.-based Teen and Young Adult Cancer program founded by Roger Daltrey and Pete Townsend of the rock band The Who, Teen Cancer America helps hospitals and health care professionals bridge the gap between pediatric and adult oncology care.

he Duke Department of Pediatrics has once again been ranked second nationally on the list of National Institutes of Health (NIH) research grant funding for pediatrics clinical science departments with a total of $39,483,376 for 2018.

Three of the department’s researchers were ranked among the top 20 for individual research funding:

# 16 Daniel K. Benjamin, MD,

PhD, MPH

#10 Sallie R. Permar, MD, PhD # P. Brian Smith, MD, PhD, 1

MPH, MHS

Smith took the #1 spot and is now the highest NIH-funded researcher in pediatrics in the nation.

Success in securing NIH funding is considered a strong indicator of the quality of an institution’s research. Rankings are compiled by the independent Blue Ridge Institute for Medical Research based on the most current NIH data.

NEWS

Duke Receives Funds for Teen and Young Adult Cancer Patients

NEWS 4

Best Prom Ever 2019 Photos by Shawn Rocco

Below, James Fowler (in red) enjoys some time with friends on the dance floor.

D

uke Children’s teen and young adult patients danced the night away at the third annual Duke Children’s Prom on April 6.

Attendees entered a fairy-tale world of “Once Upon a Prom” and enjoyed music, dancing, and activities from local vendors, including Durham’s own Poetry Fox and the Duke Health Arts for

Life team.

Thank you to the Duke Children’s prom staffers, volunteers, and organizers, particularly the Adolescents Transitioning to Leadership and Success (ATLAS) team in the Department of Psychiatry, for their hard work; the local vendors who came out to make the night special; and, of course, the Duke

Children’s patients and patient families for bringing their best dance moves and so much joy.

Additional support was provided by George Grody, the I’m Not Done Yet Foundation, Meg’s Smile Foundation, and the Duke University chapter of Pi Kappa Alpha.

BRIAN MULLINS

Duke Children’s STORIES

Above, Tatiana Young, 15, gets ready before the start of the Duke Children’s Prom.

W Armstrong

Above, My’Asia Stokes dances with her mom Barsima Oliver.

Below, James Fowler (right) and his mom Cyndi pose in the photo booth.

“She exemplifies the power of education, dedication to children, and passion for equality.

She will leave a part of herself in all of us who have had the privilege to work and learn with her.“ ANN REED Chair of the Department of Pediatrics

hether coaching student athletes on the track field, caring for her patients, or recruiting and mentoring Duke University medical students, Brenda Armstrong, MD, was passionate about people, especially young people, and she committed her life to helping ensure every person was valued, treated with respect, and offered opportunities to learn and prosper.

Armstrong, a professor in the Department of Pediatrics, died October 7, 2018, at age 69.

Her roles at Duke also included serving Duke University School of Medicine for more than 20 years as associate dean for admissions and most recently as senior associate dean for student diversity, recruitment, and retention.

Armstrong was the second black woman in the United States to become a board-certified pediatric cardiologist. Her passion was bringing high quality medical care to underserved populations in Durham and beyond.

She was among the first African-American students to attend Duke University as an undergraduate. In 1967, she and her peers established the Afro-American Society, and Armstrong served as its president.

While at St. Louis University School of Medicine, she was the only black woman student for three of her four years of training.

“Brenda Armstrong leaves an enduring legacy of leadership, service and exceptional academic and professional productivity,” says Ann Reed, MD, chair of the Department of Pediatrics. “She exemplifies the power of education, dedication to children, and passion for equality. She will leave a part of herself in all of us who have had the privilege to work and learn with her.”

NEWS

Renowned Pediatric Cardiologist and Community Hero Dies

A 6

Duke Children’s STORIES

At 10 years old, Clark Eselgroth’s dream was coming true—he had won the role of Fritz, the main young male lead in The Nutcracker.

He was set to be on stage, performing one of the most famous parts in all of classical ballet.

But, that dream wouldn’t come to fruition.

By the time rehearsals began, Clark was on crutches due to pain so intense in his hips and his leg that it disrupted his sleep. Some days, he could barely walk. Not only were his hopes of dancing in The Nutcracker dashed, but his lifetime goal of becoming a professional dancer was in jeopardy.

“Clark would wake up in the middle of the night, crying in pain,” says Amy Milne, his mother. “We took him to our local pediatrician, and things escalated quickly because this wasn’t normal in a child.”

By Whitney J. Palmer Photos by Chris Hildreth

CHASING CLARK’S DIAGNOSIS Attempts by his sports medicine doctor and regular pediatrician in Asheville to treat Clark for tendinitis or overuse injuries, as well as control the pain with naproxen, failed. Then, his pediatric orthopaedist ordered an MRI. The image lit up bright white with bone lesions covering areas where he felt pain and several where he didn’t. Fortunately, a bone biopsy ruled out cancer.

That left one possible diagnosis—chronic recurrent multifocal osteomyelitis (CRMO), also known as chronic non-bacterial osteomyelitis. This non-infectious auto-inflammatory

SOARING MN TO NEW HEIGHTS

YOUNG DANCER CONQUERS RARE, DEBILITATING DISEASE AND NOW TRAINS AMONG THE WORLD’S ELITE

8

Duke Children’s STORIES

disease causes bone lesions that can produce debilitating pain. It is a rare disorder—several hundred cases have been reported in the literature, but the incidence of the disease is unknown.

Lesions, which can be mistaken for malignancies and delay diagnosis and treatment, can appear anywhere, but the most serious are on the spine and growth plates. Left untreated, they can lead to spinal collapse and stunted growth. Affected children also have an increased risk of psoriasis; inflammatory bowel disease, such as Crohn’s disease or ulcerative colitis; arthritis; and eye disease.

With a referral from an adult rheumatologist, Clark’s family sought out specialized treatment from Duke pediatric rheumatologist Jeffrey Dvergsten, MD. Duke is one of only three institutions in North Carolina that treats CRMO.

“Over time, if we hadn’t treated Clark, the ongoing pain from his CRMO would have significantly limited his ability, particularly his ability to dance and do the biggest, most complicated moves.”

JEFFREY DVERGSTEN

During the first appointment, in December 2012, he confirmed Clark’s diagnosis and launched him down a more targeted therapy path.

Jeffrey Dvergsten examines Clark during a checkup when he was home on spring break.

Frazier Duane, the family cat, gets some attention from Clark.

YOU CAN SUPPORT more patients like Clark.

Go to gifts.duke.edu/dch or use the enclosed envelope.

DANCING THROUGH THE PAIN When Clark arrived at Duke, he had been on crutches intermittently for three months. He was limping, had lost significant range of motion, and was taking only naproxen for pain relief. Dancing was sidelined.

“Clark had given up dance temporarily because it was too painful,” Milne says.

“CRMO is a really deep bone pain that you can’t massage away. It’s extremely hard to provide comfort until you get medication that causes the inflammation to subside.”

But, after Dvergsten found the right mix of prescription medications, which included combining a higher dose of nonsteroidal anti-inflammatory drugs (NSAIDs) with the anti-inflammatory sulfasalazine, Clark returned to training quickly, enrolling in the International Ballet Academy in Cary. The frequent drives to the Triangle for training and treatment, though, eventually led the family to move to Cary, making it easier for him to balance school, training, and controlling his CRMO. And, as Clark perfected his skills, more opportunities arose. At age 11, he was accepted a year early to a six-week summer intensive program in Houston.

According to Milne, the camp marked the beginning of his serious ballet

“If I hadn’t been able to get past roadblocks like CRMO flares or wait patiently for injuries to heal, I wouldn’t be where I am today. I wouldn’t be as smart about dealing with problems.”

CLARK ESELGROTH

FEATURE

instruction.

His training progressed uninterrupted, except for normal childhood injuries, including a broken arm, until 2015 when Clark hit a growth spurt. Rapid growth can kick-start a CRMO flare, tricking the body’s autoimmune system into thinking something is wrong with the bones. As a result, Clark developed a second round of inflammation, lesions, and pain. This flare threatened his dancing career.

An MRI showed not only new lesions, but it also revealed a secondary diagnosis. Clark had sacroiliatis, arthritis that attacks the lower back and pelvis, creating pain in the buttocks, lower back, and down the legs. Treating him more aggressively was critical to preserving his dancing dream.

“Over time, if we hadn’t treated Clark, the ongoing pain from his CRMO would have significantly limited his ability, particularly his ability to dance and do the biggest, most complicated moves,” Dvergsten says. “And, his arthritis would have, over time, caused the joints affected by that condition to fuse.”

Clark’s father, Chris Eselgroth, travelled to London to help Clark get settled at the Royal Ballet School.

10

Duke Children’s STORIES

WHAT IS CRMO? Chronic Recurrent Multifocal Osteomyelitis causes bone lesions that can produce debilitating pain. It affects mainly children and is rare—only 400 cases are currently identified.

Duke is one of only three institutions in North Carolina that treats CRMO.

While on spring break Clark enjoys shopping at thrift stores with his mother, Amy Milne (not pictured).

CLARK’S TREATMENT To combat both conditions, Dvergsten prescribed etanercept, a weekly injectable protein that combats inflammation.

Over time, as patients improve and stabilize, they can wean off the medication.

Clark followed the weekly regimen for more than two years. The same lesions appeared on his 2017 MRI, but etanercept had his pain under control. By January 2018, everything was clear, Dvergsten says, and he scaled Clark’s dose back to every 14 days. He’s remained stable and is anticipated to switch to an injection every 21 days once there’s a break in his rigorous training schedule.

IMPACT ON TRAINING Thanks to these treatments, Clark was able to travel, on scholarship, to complete a 10-day training program in Australia in 2018. Shortly thereafter, he was also offered scholarships to train in Monaco and with The Royal Ballet School in London.

Today, Clark, at 16, is in the first year of a three-year training program with The Royal Ballet School Upper School in London. While there, he’s

Save the Date: September 21

continuing his treatment without interruption. The school nurse keeps his injections refrigerated, and Clark administers them himself. The school also assigned him only one roommate—instead of three—to minimize his exposure to viruses.

The instruction he’s receiving is advanced, and he credits the treatment he received at Duke to control his pain with his ability to continue training at such a high level. It also played a significant role in his learning to handle any setbacks that come his way.

“I learned you don’t always get a say in what your body is doing, or is capable of, and patience is more important than any other thing—ever,” Clark says. “If I hadn’t been able to get past roadblocks like CRMO flares or wait patiently for injuries to heal, I wouldn’t be where I am today. I wouldn’t be as smart about dealing with problems.”

Ultimately, Clark says, the treatment he received at Duke to control his CRMO pain allowed him to grab the chance to study and excel at The Royal Ballet School when that door opened. And, it’s helped him maximize his time in London—when he graduates, he hopes to have the opportunity to be considered to join The Royal Ballet.

“It’s opportunity after opportunity here. Having a chance to see the company perform regularly is a dream come true,” Clark says. “It’s my favorite company in the world. I wouldn’t trade this for anything.”

C E L E B R AT I N G M I L E S T O N E S

Join us for an unforgettable evening celebrating Duke Children’s commitment to the health and well-being of children in our community and around the world.

Presented by

HOTEL RESERVATIONS

We have reserved a block of rooms at the Washington Duke Inn & Golf Club, 919-490-0999.

A special rate is available on a first-come, first-served basis when you provide the group number 696046.

QUESTIONS AND SPONSORSHIP INFORMATION For sponsorship information, contact Debbie Taylor, Senior Associate Director, Duke Children’s & Duke Cancer Institute Development, at debra.l.taylor@duke.edu or 919-385-0045. giving.dukechildrens.org/ events/duke-childrens-gala

September 21, 2019 Washington Duke Inn & Golf Club Durham, NC

Duke nurse is leading the charge to keep kids safe in Durham.

A

Duke Children’s STORIES

s a nurse at a Level 1 trauma center in the 1980s, Theresa Cromling found herself constantly thinking that she would love to put herself out of a job.

“I saw injury after injury—kids who would not have been injured had they been in a properly installed car seat or been biking with a helmet,” she says. “How do we stop this?”

Statistics confirm Cromling’s anxiety. According

to Safe Kids, a worldwide organization created to prevent childhood injuries, preventable injuries are the number one killer of children in the United States. Every year in this country, 8,000 families lose a child because of a preventable injury.

Cromling got her chance to do something about her concerns in 2000 when she was offered the position of coordinator for Safe Kids for Durham County, the local affiliate of the worldwide organization. Duke Children’s is the local lead agency, and administrators there knew Cromling would be perfect for the halftime job, combining it with her clinical nurse IV job in the procedural sedation unit at Duke, where she is on a team to keep children comfortable during medical procedures.

Since 1988, when the nonprofit was founded, Safe Kids has helped reduce the U.S. childhood death rate from unintentional injury by 57 percent.

Cromling emphasizes

12

Theresa Cromling’s work with Safe Kids includes demonstrating proper car seat installation to families in the Durham community.

that as coordinator of Safe Kids Durham County, she is not doing this work alone.

Safe Kids has established partnerships with organizations like Welcome Baby, Head Start, and the fire department for fire and burn education. Fire stations with certified technicians also serve as permanent checking stations for car seat THERESA CROMLING installation, which is a Safe Kids priority, as Cromling says that 91 percent of infant car seats have at least one installation error.

Cromling is a certified child passenger safety instructor, teaching a nationally standardized class to persons wanting to become certified car seat technicians. She is also an instructor for the “Transporting Children with Special Health Care Needs” class—and is one of only two people in the state certified to teach the class.

Over the years, Cromling has witnessed changes in childhood injury. Motor vehicle, drowning, and

“I saw injury after injury— kids who would not have been injured had they been in a properly installed car seat or been biking with a helmet. ‘How do we stop this?’”

BY MIRIAM SAULS

LES TODD

FEATURE

Safety First

> Correctly used child safety seats can reduce the risk of death by as much as %.

71 >3 out of 4 car seats

are not used or installed correctly.

SOURCE: SAFE KIDS WORLDWIDE

fire accidents are ongoing, but the growth of opioid use across the population has presented new challenges for children, with suicide and poisoning becoming more prevalent.

“One of our programs at Safe Kids is Operation Medicine Drop,” says Cromling. “We work with local law enforcement agencies twice a year to encourage families to bring their unused expired medications to us to dispose of. Last year in North Carolina we collected 43,838,250 pills.”

In 2017, Cromling was awarded the statewide Bill Hall Lifetime Achievement Award for child passenger safety. Hall himself,

LEARN MORE about car seat safety at safekids.org/car-seat.

recently retired from the UNC Highway Safety Research Center says, “Theresa has really put her heart, her soul, her passion, and lots of hard work into trying to make children in North Carolina as safe as possible.”

And that reaches well beyond car seats. Cromling still hopes to put herself out of a job, but in the meantime, her passion will push her to continue doing what she can. “Seeing the devastation to families when their kids are injured, or worse, do not get to go home with them, you just know you have to do something to prevent that sorrow.”

FEATURE

NEW DUK E ST UDY A IMS

BY ALIZA INBARI

14

Mothers in the Project HOPE 1000 study wear wristbands to capture what they breathe in during pregnancy.

CHRIS HILDRETH

Duke Children’s STORIES

TO END DISE A SE WHERE I T BEGINS .

HOPE (Health Outcomes related to Pregnancy and early-life Exposures) 1000 in November 2018.

THE FIRST 1,000 DAYS OF LIFE— THE TIME FROM CONCEPTION THROUGH PREGNANCY AND THE FIRST TWO YEARS OF LIFE—IS KNOWN TO HAVE A PROFOUND IMPACT ON OUR LIFELONG HEALTH AND THE DISEASES THAT WE DEVELOP LATER IN LIFE.

Some well-known examples of this are the harmful, long-life effects of smoking and alcohol use during pregnancy on the baby’s health.

Smoking can increase the risk of low birth weight, lung problems, and other birth defects, and drinking can lead to premature birth, intellectual disabilities, and heart and other birth defects. In turn, studies show that low birth weight is associated with developing cardiovascular disease, osteoporosis, type 2 diabetes, and obstructive airway disease as an adult.

But what if socioeconomic factors and environmental exposures during pregnancy like the air that mothers breathe or the water they drink contribute to other common diseases, such as asthma and cardiovascular disease?

To answer that question, Sallie Permar, MD, PhD, professor of pediatrics, molecular genetics and microbiology, and immunology, and Geeta Swamy, MD, associate professor of obstetrics and gynecology, launched Project

underrepresented minority groups, and this is one of the drivers for this study—to try to improve health for our community.”

UNDERSTANDING THE ORIGINS OF DISEASE The project, funded by the Duke Children’s Health & Discovery Initiative and the Translating Duke Health Initiative, is a longitudinal study that will include 1,000 mother-infant pairs and focus on biological measures during the first 1,000 days of life to understand the links between pregnancy factors and mother-infant health outcomes.

“We are trying to understand what are the important genetic, epigenetic, and clinical factors, as well as environmental exposures, that can predict some of the most common diseases in children like asthma, diabetes, obesity, and neurodevelopmental problems, and if there are interventions that can be used early in life to change the severity or reduce the number of children that are suffering from those diseases,” says Permar.

Permar was intrigued by studies demonstrating that the predictors of long-term disease start as early as birth and that low birth weight, less than 2 to 2.5 kilograms, can predict up to 30 percent of the risk to develop a cardiovascular disease later in life.

“That really led me to think that investing in understanding the impact of pregnancy exposures and early life’s health will have the greatest impact not only on the child’s life, but on the population as a whole,” she says. “If we focus our efforts not

CAPTURING THE DATA

Geeta Swamy and Sallie Permar

“We are trying to understand what are the important genetic, epigenetic, and clinical factors, as well as environmental exposures, that can predict some of the most common diseases in children.”

SALLIE PERMAR

on the end-of-the-line disease, when you have a heart attack or cancer, but on the origins of the disease and end it where it begins, we can improve health in child and adult populations.”

Swamy adds: “We are starting to see a decline in preterm birth rates in our area, but it is still almost two times higher in African American women than in Caucasian women.

We still see that adverse outcomes in pregnancies like hypertensive disorders are more common in

Project HOPE 1000 enrolls pregnant women at the first or second trimester of pregnancy (up to 24 weeks of gestation). Participants will have study visits during each trimester of pregnancy, at the delivery of their baby, and four to six weeks after birth. The mother and the infant will provide a series of biospecimens, such as blood and microbiome samples.

Mothers will wear silicone wristbands for five days each trimester to capture what they breathe in during the pregnancy, and will fill out a study survey about their diet, environmental exposures, and socioeconomic factors.

The data will be collected from the beginning of the pregnancy through the second year of life.

The study will continue to follow mothers and their children until they are 18 years old via their electronic health records and academic, economic, and social services data. The data will allow researchers to identify factors that contribute to poor birth outcomes, including the mother’s health; pre-term birth and low birth weight; and longer-term health and well-being outcomes for children, such as academic achievement and growth trajectories. The study’s data and biospecimens will be available for other studies conducted by researchers across Duke.

FEATURE

COMPLEX CARE Special program offers support, better-integrated care for children with medical complexity.

“That’s a really challenging dynamic: coordinating all the pieces that are necessary to care for a medically complex child.”

DAVID MING

A

fter several years of treating hospitalized patients at Duke Children’s, David Ming, MD, assistant professor of medicine and assistant professor in pediatrics, noticed a troubling trend. He and his fellow pediatric hospitalists would treat children with a multitude of serious and chronic conditions and release them from the hospital—only to see them often readmitted a few months later.

These children saw many specialists, sometimes across different towns and health systems, and their medical information was scattered; frequently, the only centralized place all that information resided was with the patient’s parents. Each time one of these patients was readmitted to Duke Children’s, Ming and his fellow hospitalists found themselves managing much of the care coordination.

CHRIS HILDRETH

Patient Gabrial Smith (center) with his parents, Stephanie and Brandon.

“That’s a really challenging dynamic: coordinating all the pieces that are necessary to care for a medically complex child,” says Ming. “I can only imagine how hard that would be for a non-medically trained person to do, particularly for their own child, when the stakes feel even higher.” In 2014, with the help of fellow hospitalist Heather MacLean, MD, and the support of a state grant to develop innovative approaches to coordinate care for children with medical complexity statewide, the Duke Children’s Complex Care Service (CCS) was born.

WHO ARE CHILDREN WITH MEDICAL COMPLEXITY? Children with medical complexity (CMCs) have lifelong or chronic illnesses or conditions that do not stem from any single disease or organ system. They may have a

JOHN HANSEN

16

Duke Children’s STORIES

By Lindsay Gordon-Faranda

Stacy Sorensen holds a photo of her son Ryan, who passed away in 2016.

Stacy now works part time with the Duke Children’s Complex Care Service in honor of Ryan’s memory.

MEASURING THE IMPACT

Duke researchers conducted a study to evaluate the impact of the Duke Children’s Complex Care Service (CCS) care model. The study included 59 patients who enrolled in the CCS program.

18

Duke Children’s STORIES

Annual Hospitalizations

1.9 before enrollment 1.0 after enrollment

Length of Stay (Days)

9.8 before enrollment 5.6 after enrollment

Annual Hospital Days

5.6 after enrollment

“Ryan was the happiest kid. It was just natural for him to be in a good mood, looking for the next joke or toy or entertainment.

He had no idea that he was medically complex and fragile.”

STACY SORENSEN

17.8 before enrollment

seizure disorder, a genetic defect, a heart defect that is related to the genetic defect, and neurodevelopmental delays. They usually depend on medical technology, such as feeding tubes, ventilators, and shunts, for daily living. As a consequence of all of these conditions, these children are frequently admitted to the hospital.

Ryan Sorensen was one such child.

Born 16 weeks early in 2012 and weighing 15 ounces, he had a severe intraventricular bilateral brain hemorrhage and numerous other complications.

After two months in another hospital, Ryan was eventually moved to the Duke Children’s Intensive Care Nursery, where he spent nine months, nearly succumbing to complications from pulmonary hypertension.

When he was discharged, he had shunts to help with the pressure in his brain from the hemorrhage, a tracheostomy, a ventilator, and a feeding tube. His parents, Stacy and Tom, quickly learned how to manage Ryan’s care with the assistance of home care nurses—all while continuing to work full time. Despite these difficulties, life had a routine. “Ryan was the happiest

Annual Hospitalizations refers to the median number of times a patient is admitted to the hospital per year. Length of Stay refers to the number of days per hospitalization (on average). Annual Hospital Days refers to the number of days spent in the hospital per patient per year (on average).

kid,” Stacy says. “It was just natural for him to be in a good mood, looking for the next joke or toy or entertainment.

He had no idea that he was medically complex and fragile.”

However, Ryan was frequently hospitalized due to complications with his shunt. During one of these visits, his parents were approached by the CCS team about enrolling in the program, and they joined in 2015. “They made it their business to get to know Ryan on such a detailed level,” Stacy says. “I could stop being a walking chart in the hospital and could just be a parent with a sick kid.”

FILLING A NEED Ideally a CMC would have an outpatient medical home and a primary care physician who would handle care coordination. “The reality was that, for a lot of our patients, they weren’t home enough to establish centralized care with a primary care physician,” states Katy Bartlett, MD, associate professor of pediatrics and chief of the Division of Hospital Medicine.

CCS offers several integral services

to enrolled families. A CCS clinician (nurse, nurse practitioner, or physician) is accessible 24/7 via pager, and regular communication is handled over the phone or video chat. Care coordination is centralized and all appointments and notes are accessible. If a patient is hospitalized at Duke Children’s the family has access to the Worley Inpatient Service, an inpatient care line specifically devoted to children with medical complexity. Patients in the Worley service are cared for by the CCS team, which also coordinates treatment for the patients during their stays. Most importantly, the family is always fully engaged through the process.

Bartlett says that working with families on their own personal goals is an integral part of their work. “For some parents it’s going a certain amount of time without having seizures, for some it’s their child being able to eat by mouth, and for some it’s spending more time at home,” Bartlett says. “For us, the success is helping families achieve what matters to them.”

LEAVING A LEGACY, PLANNING FOR THE FUTURE In the late fall of 2015, Ryan suffered a severe shunt infection and was comatose for several days. The damage to his brain was catastrophic, and Ryan never fully recovered. He died in May 2016, when he was four years old. Stacy, who had left her job to care full time for Continued on Page 20

CHRIS HILDRETH

Gabrial’s Story

Gabrial leaves school along with the health care worker who accompanies him to school.

Nurse Stephanie Winston (left) joins the Smith family on Gabrial’s keyboard.

Seven-year-old Gabrial Smith has been a patient in Duke Children’s Complex Care Service (CCS) for several years.

Gabrial was born with a genetic disorder called hypotonia. The condition affected his muscle tone, and muscle weakness in his mouth and jaw led to the late development of his ability to speak.

Shortly after he was born, Gabrial had a stroke that caused additional health problems. Later, one of his lungs also collapsed. Gabrial’s multiple health conditions require care 24 hours a day. His mother and father, Stephanie and Brandon, both work. They rely on help from family members and a health care worker who comes to the family’s house daily to assist in Gabrial’s care.

While Gabrial sleeps at night, a family member or a health care worker monitors his breathing. When he goes to school, a health care worker is with him constantly.

Thanks in part to his care at CCS, Gabrial is able to go to school three days a week and gets around in his power chair. He enjoys shopping, loves music, and likes to be called “GQ.” He attends school at Long Mill Elementary School in Youngsville, North Carolina, where he works on his speech therapy, and he recently wrote his name for the first time.

FEATURE

The Worley Inpatient Service

Ryan with his father Tom Sorensen

“Parents of medically complex kids sometimes need a permission slip to support themselves for self-care.”

20

Duke Children’s STORIES

STACY SORENSEN

YOU CAN HELP children with medical complexity get the care they need. Go to gifts. duke.edu/dch or use the enclosed envelope.

Ryan in his last months, wanted to do something that would utilize the knowledge and skills she gained while caring for a medically complex child, something that would honor Ryan.

An opportunity arose for a part-time family partner who would be a parent support figure and navigational aid to families in the CCS program, and Stacy jumped at it. After several months of training in counseling, health coaching, and listening, she became CCS’s first-ever family partner.

“I wanted to support the parents,” Stacy says. “The kids are getting what they need, but the parents are the engine of the car. They drive their child’s care. And if the parents are running on fumes and conk out, the whole thing breaks down. Parents of medically complex kids sometimes need a permission slip to support themselves for self-care.” Stacy supports CCS parents emotionally and logistically, offering a listening ear, giving advice from her own experience with parenting a CMC, or connecting parents with other resources as needed.

“A lot of families will tell Stacy stuff that they wouldn’t mention to the rest of our team,” Bartlett adds. “Having Stacy there to share her experiences and offer advice, I think it has been really meaningful to our patients and families.”

Currently, CCS is composed of six doctors, two nurse-clinicians, a nurse practitioner, two coordinators, a social worker, and the family partner. The program has over 90 active patients, with more than twice as many on a waitlist.

The team hopes to expand the program’s patient capacity to serve more patients, and is looking at how to scale up sustainably. They are also contending with other complications, such as medical accessibility and at-home care for patients located in rural areas of North Carolina. The team dreams of a day when every medically complex child who comes to Duke receives seamlessly coordinated care.

“I feel like we’ve come a long way, and I think we’re just getting started,” Ming says. “How do we develop a system to support parents, children, and the provider team so we can adequately support the social needs of the families who are involved? Our goal is to make the system meet those needs so that what matters most to the families and the child is front and center at all times.”

Named after retired neurodevelopmental physician Gordon Worley, MD, the Worley Inpatient Service offers specialty inpatient care and monitoring specifically for children with medical complexity. A professor emeritus of pediatrics and an expert in cerebral palsy and spina bifida, Worley was with Duke for well over thirty years, and mentored many physicians in the Duke Children’s Complex Care Service (CCS).

“When Dr. Worley retired, we had the opportunity to create and name an inpatient service line specifically for children with medical complexity,” says David Ming, MD, pediatric hospitalist in the CCS program. “There’s a long tradition at Duke of naming specialty services after es“We’re training the teemed Duke pediatricians next generation from over the years. It just of providers to seemed natural to name be able to care this service after Dr. Worley, for children not because he asked us to, with medical but as an opportunity to complexity.” cement his legacy for a long time to come.”

KATY BARTLETT Since Worley’s retirement in 2017, Ming has kept him apprised of the CCS program, and in 2018 Worley and his wife, Patricia Pukilla, PhD, made a generous gift to support the research and teaching missions of the CCS Worley inpatient service line. “We’re training the next generation of providers to be able to care for children with medical complexity,” says Katy Bartlett, MD, chief of the division of hospital medicine. “We want to make sure there is a pipeline of people who are comfortable working with this population and providing the kind of care that we provide here at Duke. I think the fact that we have the Complex Care Service provides a really unique training opportunity.”

“I never forget the child I am operating on is someone’s baby and everything to them.”

JOSEPH W. TUREK Chief of Pediatric Cardiac Surgery and Executive Codirector at Duke Children’s Pediatric and Congenital Heart Center ALEX BOERNER

Nick Andersen, MD, and Joseph W. Turek

The Heart of the Matter Two pediatric heart specialists have made it their mission to improve the lives of some of Duke’s most vulnerable patients.

By Rebecca Guenard, PhD

S

ometimes when a heart malfunctions the defect is obvious, other times it’s hidden.

Sometimes a heart malfunction is discovered before a child is born and other times it remains unknown even after death. At Duke Children’s,

doctors are developing new research and treatment methods that solve both the clear and murky cases involving a child’s heart. The scientific and clinical insights gained by these methods promise to improve the quality of life for millions of pediatric patients with congenital heart disease.

AN ENHANCED PROCEDURE As chief of pediatric cardiac surgery and executive codirector at Duke Children’s Pediatric and Congenital Heart Center, Joseph W. Turek, MD,

PhD, has performed a special procedure called the Norwood operation hundreds of times. The operation is necessary when a patient has only one of two pumping chambers in the heart.

Within their first two weeks of life, babies barely bigger than a five-pound bag of sugar require surgery to re-plumb the heart so a single chamber functions as two.

Historically, the surgery was performed while the heart was stopped and the organs were cooled, slowing blood flow.

Over the past several years, Turek and his team have enhanced the Norwood operation to provide blood flow to all vital organs,

Aorta is smaller

HALF A HEART

HEART NORMAL

FEATURE

PEDIATRIC HEART SURGERY

Left ventricle is smaller

During the surgery, small tubes are sutured to the heart to allow blood flow during the five-hour operation

22

Duke Children’s STORIES

Babies born with only one chamber pumping blood require surgery to allow for proper blood flow. The diagrams show the actual size of the hearts. The white arrows indicate blood flow. including the brain, kidneys, and heart, during surgery. They perform the operation as the heart continues to pump, sewing tiny tubes into a tiny heart the size of a strawberry to supply the precious fluid during the five-hour operation. This innovation in the procedure lowers the chance of organ malfunction, giving the patients better odds for surviving until their next operation.

“I never forget the child I am operating on is someone’s baby and everything to them,” says Turek. “I want to do everything I can to help these children live long, productive lives and advance the field in the process. This is what attracted me to pediatric heart surgery in the first place.”

UNMASKING THE MYSTERIES OF GENETIC MUTATIONS Andrew Landstrom, MD, PhD, shares Turek’s passion for pediatrics. He joined Duke as an

assistant professor of pediatrics in the summer of 2018 to study heritable heart diseases that can cause sudden cardiac arrest. “I have always loved genetics, and over time I realized that

“I have always loved genetics, and over time I realized that pediatric medicine and the early identification of these diseases could make a crucial impact.”

ANDREW LANDSTROM Assistant Professor of Pediatrics in the Division of Cardiology

pediatric medicine and the early identification of these diseases could make a crucial impact,” he says.

A myriad of proteins modulate the heart’s ability to contract. Landstrom sifts through a child’s DNA to determine if there are any errors in the genetic code associated with these proteins. If the code contains a typo, it could indicate that the child’s cells are making a defective protein that can impair heart function and may lead to a sudden arrest of the heart.

“Often times we are talking about a single misspelling out of four billion nucleotides. That is enough to cause a potentially lethal cardiac disease,” says Landstrom. Such a minor mistake deep in the genome can result in the sudden death of a child who seems in good health.

Landstrom hopes his research efforts will assure that no child dies unexpectedly from these types of diseases.

Recently, Landstrom began a collaboration with Duke’s head of pediatric neurology to investigate a gene mutation not previously associated with cardiac events. The misspelled gene is known to cause seizures, but he had just lost an otherwise healthy pediatric patient to a heart arrhythmia, and she was carrying a mutation in this gene.

With the permission of her parents, Landstrom collected some of the patient’s blood cells, which he transformed into living stem cells from the child. He then changed the child’s stem cells into heart cells, creating living cells that can be studied to explore why she died.

Just as a child can die unexpectedly from mutations that affect their heart, so can an infant. Landstrom says it’s likely that some sudden infant death syndrome (SIDS) cases

ALEX BOERNER

Andrew Landstrom

“If properly managed, to me, it (genetic testing) represents the new frontier of pediatric cardiology.”

ANDREW LANDSTROM

YOU CAN SUPPORT innovative pediatric heart research at Duke Children’s. Go to gifts. duke.edu/dch or use the enclosed envelope.

are due to an unknown, misspelled gene which causes a lethal cardiac arrhythmia. But he is aware that genetic information must be handled carefully, particularly in infants and children. “With more genetic testing comes more uncertainty in how we interpret it,” says Landstrom.

“Making an incorrect diagnosis of a potentially life-threatening disease in a child may mean you get unnecessary medications and, potentially, procedures. Genetics can be a red herring that leads us astray.”

He is working on expanding genetic testing to identify every error in the genome that is a marker for disease.

He hopes that one by one each gene will be studied and better understood so that someday there will be a clear list of the cardiac effects of specific mutations. Since the genetic error runs through an entire family tree, the implications are profound. “If properly managed, to me, it represents the new frontier of pediatric cardiology,” says Landstrom.

Both Turek and Landstrom credit the team mentality at Duke University Hospital for their ability to be successful in their work. Collaborating across disciplines and applying practices from adult procedures improves the level of care they can give their pediatric patients. “Our program here at Duke is one of, if not the most, innovative pediatric heart programs in the country,” says Turek.

SUPPORTERS

A Day of Thanks On October 16, Duke Children’s hosted 160 supporters at a luncheon to honor and recognize donors who have given to Duke Children’s consecutively for ten or more years.

The luncheon was held at the Champions Club at Cameron Indoor Stadium. Jamie Spatola, Duke Men’s Basketball Coach Mike Krzyzewski’s

daughter, shared her family’s history of involvement with Duke Children’s fundraising. Attendees also heard from Debbie Antonelli and her son, Frankie. Frankie has been a patient at the Duke Children’s Down syndrome clinic since he was six. He is now a college student at the Clemson Life program—a milestone Debbie and her family say would not be possible without the treatment and guidance Frankie received at Duke Children’s.

Below, James Bostwick poses with Duke basketball player Zion Williamson.

Jamie Spatola and other attendees of the Duke Children’s donor luncheon listen attentively as the Antonelli family shares their story.

JIM WALLACE

24

Duke Children’s STORIES

After the luncheon, attendees joined a select group of Duke Children’s Radiothon donors to watch a special Duke Men’s Basketball Closed Practice Session. During practice, Frankie received a signed ball from Coach K and the team.

Coach K and Frankie Antonelli share a special moment on the court.

The event’s first group of Edgers anxiously await their chance to go Over the Edge for Duke Children’s.

Left to right: Kimberly Wenger, Erin Frost, Christy Griffith, Emily Cotterman of host building 21c Museum Hotel, and Christine Tankersly.

Over the Edge On October 12 and 13, Duke Children’s hosted the first Over the Edge for Duke Children’s event at 21c Museum Hotel in downtown Durham.

On Saturday, 55 participants rappelled down the side of 21c, including many Duke Children’s physicians, nurses, caretakers, and patient parents. Participants had to raise at least $1,000 for Duke Children’s to rappel down 21c. Between individual participant fundraising and sponsorship contributions, over $103,000 has been raised for Duke Children’s.

The next Over the Edge for Duke Children’s event will be held in April 2020 at 21c Museum Hotel in downtown Durham. For more information visit giving.dukechildrens.org.

JOHN HANSEN

Friday afternoon was a media event with a dozen Durham celebrities who rappelled down the side of 21c, including the Blue Devil, Wool E. Bull, and Chair of Pediatrics Ann M. Reed, MD.

Betsy Turek (top), Billy Simcox of sponsor organization Skanska (bottom left), and Charles Mautz (bottom right) all enjoy the views and beautiful fall weather while taking the leap for Duke Children’s.

SUPPORTERS

Sharing the Love with Arhaus The furniture store Arhaus of Raleigh celebrated Valentine’s Day with a Share the Love event for the Duke Children’s cardiology program. Guests enjoyed food, drinks, live music from American Idol contestant Adam Lee Decker, and moving stories from Duke Children’s patients and physicians at a kickoff event on February 13. Arhaus donated 10 percent of all sales from February 13 to 17, raising nearly $17,000 for the little hearts who receive care at Duke Children’s.

26

Duke Children’s STORIES

Holiday Cheer Courtesy of Skanska

Our community supporters put the FUN in fundraising!

Team members from Skanska brought some holiday cheer to our patients, patient families, and staff last December, hosting a dessert bar in the Children’s Health Center lobby and bringing toys to give to children seen in clinic that day.

The team at Skanska, which is constructing the new Duke Health bed tower addition, also brought several boxes of toys, clothes, and supplies that were taken directly to the Intensive Care Nursery, where the items will help our tiniest patients!

Jump for the Children The annual ‘Jump for the Children’ Horse Shows were held last November at the Governor James B. Hunt Horse Complex in Raleigh. This event has run for 35 years, raising over $2 million for patient treatment, medical research, and physician training at Duke Children’s. This past event featured thrilling feats by some of the finest hunter and jumper horses on the East Coast, remarks from several Duke Children’s physicians, and a special moment with Aubrey Parks, a Duke Children’s patient and budding equestrian. A big thanks to the ‘Jump for the Children’ team for all that they do for Duke Children’s!

Portraits with a Purpose The Duke Pediatric and Congenital Heart Center and Heart 2 Heart Collaborative, a support group for families dealing with pediatric congenital heart disease, celebrated Valentine’s Day early on February 12 with the unveiling of a new set of portraits that will welcome patients, families, and visitors into the Duke Children’s Pediatric Cardiac Intensive Care Unit. Each patient family unveiled their patient’s portrait, captured

by Cornell Watson Photography, and guests enjoyed snacks, beverages, time to mingle, and Valentine’s Day arts and crafts. Thanks to all our heart families and the Duke Children’s heart heroes who joined us for this special evening!

Hands for Hearts Fellowship Hands for Hearts has partnered with Duke Children’s to establish the Matthew F. Sullivan pediatric cardiology fellowship. This partnership represents a $500,000 commitment to training Duke Children’s advanced fourth-year pediatric cardiology fellows over the next five years. Hands for Hearts, based out of Greensboro, works to support congenital heart defects research.

Congratulations to the first fellowship recipient, McAllister Windom, MD, and special thanks to our partners at Hand for Hearts!

SUPPORTERS

Speedway Features Pediatric Patient

Children’s Miracle Network Hospitals partners work to raise funds for patient care, treatment, and medical research at Duke Children’s.

A special window cling featuring Duke Children’s patient Jackson Wall was displayed at the 143 Speedway gas stations that raise money for Duke Children’s as part of their Children’s Miracle Network Hospitals fundraising.

Speedway stores raise money for Duke Children’s year-round through donations taken at the register and periodic fundraising pushes.

The next time you are at your local Speedway, be sure to make a donation, and thank the associates for all they do for Duke Children’s.

28

Duke Children’s STORIES

Walmart Day Nearly 450 friends from the 120 Walmart, Sam’s Club, and Neighborhood Market locations that fundraise for Duke Children’s joined the Duke Children’s development team to get hyped for their annual fundraising campaign. Store associates and managers learned fundraising tips and strategies and got to socialize with the Duke Children’s patient families who are

serving as patient ambassadors during the campaign. In 2018, Walmart raised $877,467 for Duke Children’s through their register campaign and other efforts such as bake sales and hot dog bars. This year’s campaign will be held June 10 to July 7.

Don’t forget to donate at the register and thank your cashier for a strong commitment to supporting the kids at Duke Children’s!

Pancakes for a Cause A total of 24 IHOP locations in the Triangle, Triad, Fayetteville, and Wilmington areas culminated several weeks of fundraising for Duke Children’s with the annual IHOP Free Pancake Day Event on March 12.

Duke Children’s patient ambassadors and local Miss North Carolina titleholders visited several IHOPs to enjoy some pancakes and to thank the servers for their fundraising efforts.

MIX 101.5 Radiothon Coach Mike Krzyzewski stopped by the 2018 MIX 101.5 Radiothon for Duke Children’s to show his support for the kids! This past year’s Radiothon, held December 12 and 13, raised $402,112 to support the patients, families, physicians, and caregivers at Duke Children’s. The MIX 101.5 WRAL-FM Radiothon is Duke Children’s largest single fundraising event each year. This signature event raises funds to benefit children’s programs and further support the continuation of excellence within the medical and surgical programs at Duke Children’s. The 2019 Radiothon, the event’s 25th anniversary, will be held December 17 and 18.

Non-Profit Org U.S. Postage PA I D Durham, NC Permit No. 60 Duke University Health System, Inc. 710 W. Main Street, Suite 200 Durham, NC 27701

Save the date for the

HOW YOU CAN HELP You can support lifesaving research and patient care at Duke Children’s.

Make a gift any of these ways:

1. Use the enclosed envelope

2. Use the secure

online form at gifts.duke.edu/dch

3. Call us at

919-385-3138

25th MIX 101.5 Radiothon for Duke Children’s!

December 17-18, 2019 To learn more, giving.dukechildrens.org/events/radiothon The Duke Children’s Gala

Celebrating Milestones Washington Duke Inn & Golf Club

SAVE SATURDAY, THE SEPTEMBER 21, 2019 DATE Join us for an unforgettable For tickets or to sponsor the evening celebrating Duke Children’s commitment to the health and well-being of children in our community and around the world.

Gala, visit giving.dukechildrens. org/events/duke-childrens-gala For more details see page 11.