Inside Pediatrics Summer 2019

P E D I A T R I C S

Spring/Summer 2019

ROBOTICS + REHABILITATION Technology-assisted therapies signal new era in treatment

E very time a patient experiences a “first,” something he or she has not been able to do since a diagnosis or injury, it fosters a sense of accomplishment and pride in both the patient and those who see to their care. Nineteen-year-old Janey Carter of Jasper, Alabama, was involved a near- fatal car accident in 2017 that left her paralyzed from the neck down. Six weeks post-surgery, Janey was transferred to Children’s of Alabama, where she began physical therapy and eventually was deemed an ideal candidate for Children’s new Robotics and Mobility Program, also known as RAMP. Made possible through community and philanthropic support, RAMP uses technology-assisted therapies to rehabilitate children and adolescents with physical impairment. With assistance from the Ekso Robotic Exoskeleton, Janey can stand and walk – milestones that are not lost on her or her family, or our staff. Children’s of Alabama is only the second pediatric program in the Southeast to offer the exoskeleton and other advanced technologies for rehabilitation use, and we are fortunate to help move the needle in Janey’s recovery, as well as the recovery of other RAMP patients featured in these pages.

It is our mission at Children’s of Alabama to provide the finest pediatric health services to all children in an environment

that fosters excellence in research and medical

education. In addition to the advanced technology of RAMP, we are home to the world’s most advanced pediatric patient simulator used to train both our staff and community hospital staffs throughout Alabama. Our Community Health Care Simulation Program, or COACHES Program, provides free, scenario-based simulation training to community hospital emergency departments and inpatient pediatric units that are oftentimes the first care providers for pediatric patients. Through partnerships and education, we are committed to providing top- quality patient care and seeing that every child achieves the milestones of living a healthy life.

Enjoy,

On the Cover: Alex Cook, 20, of Mt. Olive, completes an exercise on the Bioness Vector System with assistance from Children’s of Alabama Physical Therapist Casey Blackwelder. The Vector is part of Children’s new Robotics and Mobility Program (RAMP), which uses technology-assisted therapies to allow patients to practice movements that they may otherwise be unable to perform. Read more about RAMP on page 10.

Children’s of Alabama 1600 7th Avenue South Birmingham, Alabama 35233

(205) 638-9100 childrensal.org

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Bringing the nephrologist to the patient – virtually

ADMINISTRATION Mike Warren, President and CEO Coke Matthews, Executive Vice President Garland Stansell, Chief Communications Officer EDITORIAL Cassandra Mickens, Editor Trent Graves, Design

STEPP-IN initiative improves neonatal outcomes

Pediatric simulation is focus of COACHES Program

Amy Dabbs, Digital Content Denise McGill, Photography Patrick Deavours, Photography CONTRIBUTORS

R+R: Robotics + Rehabilitation

Andre Green Adam Kelley Rhonda Lee Lother Marti Webb Slay

John Tracy Tina Wilson PHYSICIAN MARKETING Tiffany Kaczorowski MEDICAL LEADERSHIP Mitchell Cohen, M.D. Katharine Reynolds Ireland Chair of Pediatrics, University of Alabama at Birmingham Physician-in-Chief, Children’s of Alabama Mike Chen, M.D. Joseph M. Farley Chair in Pediatric Surgery, University of Alabama at Birmingham Chief of Pediatric Surgery and Surgeon-in-Chief, Children’s of Alabama Lee I. Ascherman, M.D., M.P.H. Chief of Service, Child and Adolescent Psychiatry, University of Alabama at Birmingham For questions or additional information or to share feedback, please contact us at insidepediatrics@childrensal.org. An online version of the magazine is available at childrensal.org/insidepediatrics.

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CCAIR helps patients, families navigate intestinal rehabilitation

News, Honors and Awards

CONT E N T

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Telenephrology program broadens specialty health care footprint

W ith only six pediatric nephrologists in the state of Alabama, families must often drive hundreds of miles – and many times stay overnight – for appointments with Children’s of Alabama physicians. In fact, 48% of the hospital’s transplantation patients come from more than 100 miles for each appointment, and 32% from more than 200 miles, said Daniel Feig, M.D., Ph.D., who directs the pediatric nephrology and renal transplantation program. “It’s more than a slight challenge to get here,” Feig said. “It entails missed school and work and the cost of getting back and forth.”

And that, in turn, can compromise the quality of care or even lead to missed opportunities for care. Now, however, families can “see” a doctor just a few miles from home thanks to the practice’s new telenephrology program. The program, which began in June 2018, builds on the success of the adult telenephrology program for dialysis patients started by

Daniel Feig, M.D., Ph.D, director of the division of pediatric nephrology and medical director of pediatric renal transplantation at Children’s of Alabama, talks to a patient during a telenephrology appointment.

Families Appreciate the Convenience To date, seven patients have been seen a total of 16 times remotely. “Every family said they would like to continue the remote visits,” Feig said. The primary difference in the visits, of course, is that the patient and doctor are not in the same place. Other than that, nearly everything else is the same. Lab and radiology tests are obtained before the visit so the doctor can evaluate them prior to meeting; a high-resolution camera enables the physician to examine the skin, mouth and ears; and Bluetooth technology allows for a heart and lung exam. A nurse in the room facilitates the exam. “What we lose is the physical feel of the belly exam or the pulse,” Feig said. This is why patients chosen for telehealth are those who are most amenable to visual exam evaluations. Still, nephrologists deliberately started the program with renal transplant patients – “the most complex patients possible, said Feig. These patients see a multitude of providers when they come to the on-site clinic, including the pharmacist, child life

and social workers, the transplant nurse and transplant counselor – all of whom participate in the virtual visit. “If we can manage the most complex patients through telemedicine, we can leverage the scale to those who need less in the way of specific practitioners involved in the visit,” Feig said. Moving forward, Feig and Wallace said they plan to significantly increase the number of patients seen, including first-time patients. Challenges include not only the physical infrastructure, but training staff to schedule telehealth visits versus inpatient visits. “A true telemedicine clinic is the goal,” Feig said. Wallace agreed. “For many in Alabama, the reality is that it is telehealth versus no care,” Wallace said. For instance, 17% of families in Wilcox County do not own vehicles. “A big part of telehealth is reaching people who would never have been able to be seen,” Wallace said. Sign up to receive to the Inside Pediatrics Nephrology Division e-newsletter at insidepeds.org .

Daniel Feig, M.D., Ph. D.

Eric L. Wallace, M.D.

Director of Telehealth Eric L. Wallace, M.D. in collaboration with the Alabama Department of Public Health. It involves teaming with the public health department in each of the state’s 67 counties to see patients remotely. “So all families are within 25 miles of a site of care,” said Feig.

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That face-to-face communication is important, Black said. “There are some things about the patient’s overall acuity and clinical course that can’t be expressed on paper and are better communicated verbally at the bedside with the patient,” she said. A similar process occurs postoperatively. The team first tackled temperature. The handoff sheet requires temperature measures at six time points, including before and after transport to and from the operating room, as well as the highest and lowest temperature measurements during the procedure and the OR room temperature. “From this data we were able to pinpoint when our patients were getting cold and could work to address problems, such as providing education about thermoregulation in the OR as well as during transport,” Black said. Since implementing the new procedures, 90% or more of surgical patients have had postoperative temperatures within the accepted range. Soon after Children’s began collecting data on the initiative, it received the CHNC Continuous Quality Improvement Initiative Golden Collaborative Award. In October 2018, it also received a CHNC award for its work on improving euthermia in the postoperative process through the handoff procedure. The team is now working to improve other POMS parameters. For instance, it found that it was only collecting full POMS data on about 10 to 20 percent of its postsurgical patients. So it developed a protocol and educated NICU and bedside nurses to obtain postoperative glucose as well as blood gases within one hour of the patient’s return to the NICU from the OR. “Now that we’re collecting the data, we can take a hard look at where we could improve,” Black said. The team now evaluates the data every month and works to identify and address any problems. “Looking at the parameters and understanding how they reflect the stability of the patient and how we can improve them in the postoperative period is improving the overall care,” she said. Sign up to receive the Inside Pediatrics Neonatology Division e-newsletter at insidepeds.org .

STEPP-IN Initiative improves outcomes in neonatal surgical patients

N ewborns admitted to neonatal intensive care units (NICU) in freestanding children’s hospitals like Children’s of Alabama are typically sicker with much greater complications

in Infants and Neonates (STEPP-IN), it is part of the Children’s Hospital Neonatal Consortium (CHNC). “We know that going to the operating room creates significant physiological stress for these babies,” according to Black, in part because of the handoff between teams. The idea was to promote stability by improving and standardizing the handoff process. “There was a handoff through the charting, but not face-to-face,” she said. So a multidisciplinary team of clinicians from the NICU, anesthesia and surgery worked together to create protocols and handoff forms to improve scores on the Post-Operative Management Score (POMS), which measures temperature, glucose, pH, pCO2 and intubation status, all of which can indicate infant stress. The score is calculated based on the number of times every parameter is within the target range. The goal is to reach each parameter at least 85% of the time. The revamped protocol used today requires that the primary bedside nurse, as well as nurse practitioner and/or neonatologist, transport the infant to the pre-operative bay and provide an in-person handoff to the anesthesiologist or certified nurse anesthetist (CRNA), including written documentation of the baby’s status.

than those admitted to

NICUs in delivery hospitals. Indeed, “all our patients are referred because of some type of complication that can’t be cared for at a delivery facility,” said NICU Associate Medical Director Allison

Allison Black, M.D.

Black, M.D. Most, she said, will require surgical procedures and/or care from pediatric subspecialists. Thus, developing policies and procedures to improve the overall care and outcomes for these patients is paramount. One of the best ways to do that, research shows, is through a quality improvement approach, in which collaborative teams review current procedures, identify gaps and then redesign processes to close the gaps, which is exactly what Black and her team did to reduce perioperative stress in their tiny patients. Called the Safe Transitions and Euthermia in the Perioperative Period

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Caleb, “the world’s most advanced pediatric simulator,” is the newest addition to the Children’s of Alabama Community Healthcare Education Simulation Program, also known as COACHES. 6

Pediatric simulation at heart of training program for Alabama community hospitals

Children’s of Alabama COACHES promotes education, research and the delivery of safe, innovative health care

F ive-year-old Caleb lay in a hospital bed in the Emergency Department at Children’s of Alabama with tears rolling down his cheeks as Stacy Gaither, MSN, RN, attempted to wipe them away. Chrystal Rutledge, M.D., sat nearby on her laptop computer, controlling Caleb’s loud sobs with a click of the touchpad. Seconds later, the crying ceased. The tears dried as quickly as they came. Caleb is not a human patient – he’s the world’s most advanced pediatric patient simulator and the first capable of simulating lifelike emotions through dynamic facial expressions, movement and speech, according to his maker, medical training company Gaumard Scientific. Caleb can answer questions, follow fingers with his eyes, exclaim “Ow!” when pricked with a needle and mimic the symptoms of various medical ailments. Caleb’s human likeness may be eerie to some, but to the simulation team, it’s the cutting- edge of scenario-based simulation training. Caleb is the newest addition to the Children’s of Alabama Community Healthcare Education Simulation Program, also known as COACHES. Established in 2016, COACHES is a free pediatric community outreach simulation program with a goal of improving pediatric care in community hospitals throughout Alabama. Rutledge, COACHES Program director, is also an assistant professor at the University of Alabama at Birmingham (UAB) School of Medicine in the Department of Pediatrics,

of critically ill patients will not receive initial care at a pediatric trauma center like Children’s. “Very few community hospitals have the resources or access to a provider with significant experience in caring for critically ill children,” Rutledge said. “It is vital that community hospitals are experienced and comfortable when taking care of sick children to ensure they have appropriate, time- sensitive treatment.” Rural physicians have reported a greater need for continuing medical education regarding pediatric emergency procedures. Rutledge said Children’s receives 36% of its admissions from community hospitals. The core of the COACHES Program is simulation training, which uses technology to recreate real-life scenarios without having to wait for the actual experience. Studies have shown simulation-based assessments and educational programs can improve provider skills and performance, improve patient outcomes and reduce errors. An added bonus, Waddell said, is forming and strengthening relationships between pediatric specialty groups and community health providers. An onsite visit includes two separate two-and-a-half to three-hour simulation sessions with Caleb and Eloise, the child and infant pediatric patient simulators, respectively. Four real-life scenarios are conducted during each session. For each scenario, a medical management checklist, including national care guidelines or best practice metrics, is used to evaluate hospital health care team performance.

associate medical director of the Pediatric Simulation Center at Children’s and medical director of the Critical Care Transport Team at Children’s. Gaither, COACHES Program Research Coordinator, is also research director of Children’s simulation center.

Caleb can answer questions, follow fingers with his eyes, exclaim “Ow!” when pricked with a needle and mimic the symptoms of various medical ailments.

Kristen Waddell, MSN, CRNP, CCRN, COACHES Program Coordinator and a PICU nurse practitioner, rounds out the team, and together they have traveled to more than 30 community hospital emergency departments and inpatient pediatric units since the program’s inception. Community emergency departments are usually the first care providers for pediatric patients, and up to 90%

Team communication is evaluated using a validated tool, and a team debriefing follows each simulation scenario. The debriefing focuses on positive aspects of medical management, improvement opportunities, communication and barriers to patient care, including suggestions to overcome them. A report including the results of the survey, as well as the overall performance score for both sessions, is

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presented to each hospital. The report also details how well each hospital performed compared to Children’s performance standard, and any safety issues are also identified with a proposed plan for improvement. While simulation training is the center of the COACHES Program, the team’s dialogue with community providers doesn’t end with the onsite visit. The team offers feedback about real patients who are transferred to Children’s and assists hospitals in developing policies and acquiring pediatric supplies. “Our goal is to better equip hospitals with the training and tools necessary to ensure quality care of children, and that is a win-win for all parties involved, most importantly the children of Alabama,” Rutledge said. For more information, visit childrensal.org/coaches or email COACHES@childrensal.org. Pictured right, staff at Baptist Medical Center East in Montgomery participate in a COACHES onsite training session in March 2019. Below, from left, COACHES Program Coordinator Kristen Waddell MSN, CRNP, CCRN, COACHES Program Director Chrystal Rutledge, M.D., and COACHES Program Research Coordinator Stacy Gaither, MSN, RN, treat Caleb in the Children’s of Alabama Emergency Department.

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Inside Pediatrics Podcast

Inside Pediatrics is a free podcast series featuring specialists at Children’s of Alabama and University of Alabama at Birmingham (UAB). Episodes cover topics related to child health and wellness, research and treatment, and complement articles appearing in Inside Pediatrics magazine. To tune in, visit childrensal.org/podcast or listen via iTunes (search Children’s of Alabama under podcasts), iHeartRadio (search Children’s of Alabama), Player FM, Stitcher, TuneIn, Google Play or Spotify.

Childrens AL .org/ podcast

RAMP has opened up a host of new opportunities for therapists and patients alike in the rehabilitation of our patients. –Rhett Wheeler, PT, DPT

Janey Carter, 19, of Jasper, a patient in Children’s of Alabama’s Robotics and Mobility Program, stands in the Ekso Robotic Exoskeleton during a physical therapy appointment in May 2019. The exoskeleton uses electronic sensors and motors to help patients stand and walk.

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R + R: ROBOTICS + REHABILITATION

Children’s of Alabama’s Robotics and Mobility Program offers technology-assisted therapies for children and teens with physical impairment due to various medical conditions

A t age 17, Raylan Winston of in a traumatic brain injury and spinal cord injury. The former high school football player has since applied the “never give up” mindset that served him well on the gridiron to his physical and occupational therapy rehabilitation at Children’s of Alabama. Winston, now 19, is part of Children’s Robotics and Mobility Program (RAMP), which is designed to help increase strength, mobility and functional skills in children and adolescents with physical impairment. RAMP’s technology-assisted therapies allow patients to practice movements and activities that they may otherwise be unable to perform. Winston leaves the confines of his wheelchair to walk in the Ekso Robotic Exoskeleton. The exoskeleton, or wearable robot, uses motors and sensors that help a child or adolescent to walk with an efficient, repetitive gait pattern, helping the body re-learn proper step pattern and weight shifts. Sheffield, Alabama, was involved in a car accident that resulted

is only the second pediatric program in the Southeast to offer the exoskeleton and other advanced technologies for rehabilitation use. “Research has shown that the brain accepts and tries to relearn how to use a hand, an arm or a leg with frequent repetitive motion, and with the [exoskeleton], we are seeing faster and more positive results in re-educating a child’s whole motor pathway to walk,” said RAMP Coordinator Karen McCormack, OTR/L, CHT, MBA. Ideal candidates for the exoskeleton are children who have some upper and lower body strength and/or have been diagnosed with a spinal cord injury, traumatic brain injury or cerebral palsy. “Not everyone is appropriate for this technology, however, it has opened up a host of new opportunities for therapists and patients alike in the rehabilitation of our patients,” said Rhett Wheeler, PT, DPT, director of operations for Children’s Physical and Occupational Therapy Department. “Our patients and staff remain forever grateful for the generous support of community donors. They are

The exoskeleton can provide therapists with immediate feedback from each step the patient takes, measuring the robot’s effort versus the patient’s. During one Tuesday morning appointment, Winston’s face beamed with pride as his therapists informed him he was doing most of the work on his own while in the exoskeleton. Every step he takes is a step toward his future. Like the most attuned athletes, he listens to his body. He has regained some feeling in his legs and hips, and notes his right leg is stronger than his left. He concentrates on his posture as he walks laps around the rehabilitation gym, keeping his head lifted and hips tucked. “I couldn’t always feel my legs like I can now. It gives me a lot of hope and a lot more motivation,” Winston said. “Some days you’re down and you think you’ll never make it, but seeing the exoskeleton and feeling the movement … It makes me want to work harder.” RAMP, made possible by generous community and organizational support,

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the very reason we have been able to acquire and make this type of advanced technology available to help our patients.” Drew Davis, M.D., FAAPMR, FAAP, professor and division director of pediatric rehabilitation medicine at the University of Alabama at Birmingham (UAB), said RAMP is the latest piece in a “comprehensive and unique” pathway of care. “RAMP fits into the larger continuum of rehabilitation care that we provide, starting with Early Mobility in the PICU, intensive inpatient rehabilitation and the comprehensive outpatient therapy services Children’s has always provided, and we were recently enhanced with Children’s at Lakeshore advancing community level sports and fitness,” Davis said. Other technologies that are part of RAMP include cutting- edge Tyromotion, which helps patients like 20-year-old Alex Cook of Mt. Olive, Alabama, build strength in their hands, fingers and arms. Diagnosed with T-cell acute lymphoblastic leukemia, Cook was deemed an ideal candidate for RAMP after experiencing muscle atrophy related to his treatment. Standing before the Tyromotion PABLO system, Cook

looks like he’s playing a video game, not engaged in advanced therapy. The system includes a hand grip for rehabilitating grip and arm movement, a ball for rotational movement, and a multi- board with hand grips and elbow rests balanced over a sphere. Everything communicates wirelessly to a computer. Cook’s therapy plan includes the exoskeleton and the Bioness Vector – a harness training system that provides body weight support while practicing kneeling, crawling, standing, walking or stair climbing. The Vector alleviates the risk of falling and provides a feeling of security, instilling confidence in patients and empowering clinicians to develop effective and challenging treatment regimens. The Vector also reduces safety risks, so clinicians can remain focused on their patient’s execution of an activity. “It has helped him tremendously, as now he longer even needs a walker and can walk on his own,” said Michael Lowe, Cook’s stepfather. RAMP has also proven beneficial for 19-year-old Janey Carter of Jasper, Alabama, who was left paralyzed from the neck down

Alex Cook, 20, of Mt. Olive, completes an activity on the Tyrostation as Children’s of Alabama Occupational Therapist Cynthia Reitz Looks on. The Tyrostation, part of Children’s Robotics and Mobility Program, helps Cook and other patients build strength in their hands, fingers and arms.

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following a car accident in 2017. Within months after surgery to put a rod in her neck and a plate on the base of her skull, she regained movement and sensation in parts of her hands, arms, legs and toes. She takes advantage of therapies like the RT300 electrical stimulation bike – a flexible device that enables leg and arm cycling from a wheelchair without the need to transfer. The biking system uses functional electrical stimulation to promote muscle activation. Sensors provide constant feedback to a computer that controls the sequence of muscle contractions, as well as resistance to pedaling. Like most patients, Carter uses various devices as part of her therapy plan, including the exoskeleton, Tyromotion and the Vector. While Carter isn’t walking independently yet, she has progressed to standing on her feet. “Her goal is to be able to feed herself by Thanksgiving, and with the equipment they are using on her, she’s already working on it, and it’s a good possibility she will be able to meet that goal,” said Carter’s mother, Heather Carter. “Children’s and RAMP have really helped bring her a long way.” To read more about Raylan, Alex and Janey, visit childrensal.org/child-of-childrens .

Raylan Winston, 19, of Sheffield, walks in the Ekso Robotic Exoskeleton in Children’s of Alabama’s physical and occupational therapy gym. “It gives me a lot of hope and a lot more motivation,” Winston says of the technology.

RAMP TECHNOLOGY Bioness Vector: The Vector System provides body weight support for a child as they practice kneeling, crawling, standing, walking, stair climbing, etc. It allows for increased dynamic activities while making the child feel supported and secure, and gives the therapist “extra hands.” Ekso Robotic Exoskeleton: This exoskeletal-assisted walking device uses electronic motors and sensors to help a child stand and walk. The equipment helps establish a more normalized gait pattern and upright posture. It can be used with patients ranging in height from 5 feet to 6 feet, 2 inches tall. Motomed Muvi: This arm and leg biking system allows for passive, active and resistive cycling activity to help restore movement and function in the arms and legs. RT300: This arm and leg biking system uses functional electrical stimulation to promote muscle activation in targeted muscle groups while providing an opportunity for an aerobic and resistive exercise session.

RT XCite: This functional electrical stimulation device targets multiple groups while children engage in functional therapeutic activities such as picking up, throwing or kicking a ball.

Tyromotion AMADEO: This robotic device is used to help improve hand and finger movement, strength and ability to grasp and/ or pinch.

Tyromotion DIEGO: This system is used for unilateral or bilateral upper extremity activities to promote arm function.

Tyrostation (PABLO and TYMO): This equipment allows children to work on their grip strength and forearm/wrist movement while exercising multiple joints. This and other pieces are used in varied patient postures and positions.

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CCAIR helps patients, families navigate intestinal rehabilitation management

Multidisciplinary team says family engagement, participation is vital to outcomes of complex gastrointestinal disorders

T here are no telethons for short bowel syndrome, Center for Advanced Intestinal Rehabilitation (CCAIR) bring a passion to their work that results in a quality of care for patients and their families that is unrivaled in the region. Intestinal failure, a condition which renders a child unable to maintain adequate hydration and absorb calories for sufficient growth, results in the need for parenteral nutrition delivery through a centrally placed venous catheter. and it is not the best understood childhood medical condition. But the caregivers at Children’s of Alabama’s

“These are children who have lost function of their bowel or lost some of the bowel itself. Most of the children we take care of have short bowel syndrome. That means they developed a condition where they lost a lot of their intestine. That condition exists across neonatal intensive care units across the country, and programs like ours can provide support for that child,” said David Galloway, M.D., CCAIR medical director. “It requires a multidisciplinary approach,” Galloway continued. “You need surgeons and gastroenterologists, pharmacists,

Children’s of Alabama Center for Advanced Intestinal Rehabilitation (CCAIR) Medical Director David Galloway, M.D., second from right, and CCAIR Surgical Director Colin Martin, M.D., check in with a young patient. The clinic manages approximately 150 children with intestinal failure, ranging in age from infancy to 16 years old.

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dietitians, nurses and nurse practitioners, social workers, program managers and therapists to help teach feeding skills. It’s a complex issue that can require years of rehabilitation and therapy.” “The most common condition we treat is necrotizing enterocolitis, followed by gastroschisis,” said Colin Martin, M.D., the program’s surgical director. “Others are intestinal volvulus and intestinal pseudo-obstruction.” The clinic manages approximately 150 children with intestinal failure ranging in age from infancy to 16 years old. In many ways, the multidisciplinary team provides care for the entire family. “Family is crucial,” Galloway said. “If you have two kids with the same diagnosis and anatomy, and one family is unstable and having hard times economically and the other family doesn’t have those problems, we see a big difference in outcomes. Families are part of the multidisciplinary team. While families don’t get to control many of the social determinants of health, those who are engaged, willing to learn and are detail- oriented are the ones who do the best.” As a result, the caregivers meet with parents early and often. They ask many questions to understand family dynamics and engage families at the highest possible level. “If you ignore the challenges, if you just assume the family has a car or can afford to come to Birmingham to be seen or can pay for the supplies, you are ignoring the needs of that family,” Galloway said. “So we try not to make assumptions, and we ask them what we can do to help overcome the challenges.” “Our Birmingham population is unique,” added Martin. “We face challenges of household education, access to care and poverty that many similar centers don’t have. Health literacy and the ability of families to understand and translate that understanding into quality care are all critical in terms of outcome.” Ultimately, the outcome the program strives for is complete enteral autonomy. “That means you can live and sustain your life without the need for the IV nutrition,” Galloway said. “We also want to reduce the number of line infections. We want normal development and growth without vitamin and mineral deficiencies. We track all those outcomes.” And they compare those outcomes to other centers around the country. “We are better at some things than those institutions, and in others, we are not,” Galloway said. “But we are working on those, and we are always getting better.” There are surgical options for some of the children the program serves. “A lot of our patients require surgery early in life,” Martin said. “In that initial operation, we are very careful to limit the amount of intestine we remove. Going forward, there are surgical techniques to lengthen the intestine. One is the serial transverse enteroplasty procedure, or STEP. Over the past five years, we’ve done about 15 STEP procedures, and we’ve had some good outcomes with that. Another surgical management these kids often need is management of their central line, the device that delivers their IV nutrition. We try to minimize having to remove and replace that line. We take line infection very seriously and have improved those outcomes over the past several years.”

Transplant is another surgical option. “Some of these kids, despite our best efforts, are not able to come off IV nutrition,” Martin said. “If they have complications, such as repeated line infections or liver failure or septic events, they are evaluated by an intestinal transplant center. We send our patients to Nebraska or Cincinnati for evaluation, and several have had small bowel or intestinal transplant, or sometimes a liver transplant at the same time. These children are on lifelong immunosuppression. We also help manage children in our region who have undergone these transplants.” The program often treats patients who have contracted typical childhood illnesses. “Children with short bowel syndrome who get a stomach bug causing nausea and diarrhea can be sicker longer than a child with a normal bowel,” Galloway said. “It puts them at risk to come to the hospital for IV fluids and support.

“We really stress flu vaccinations for that reason,” Galloway continued. “That’s an illness that can affect all of us, but these kids can have it for an even longer period of time.” Even when patients achieve the ultimate outcome of enteral autonomy, the program continues to follow them for months or even years. “They are still at risk for certain vitamin and mineral deficiencies, and we still have to watch their growth. Just because they come off IV nutrition doesn’t mean they are eating really well by mouth. They may still be dependent on tube feeding. We want to know for sure they are continuing to grow and do well,” Galloway said. “There are a number of conditions out there that are well understood and receive a lot of press or attention,” Galloway said. “Intestinal rehabilitation is not one of them, but it will never go away. There will always be a need for it,

David Galloway, M.D.

Colin Martin, M.D.

and it’s up to us to communicate that need. Everyone on this team is tremendous. Each one is passionate about what they do, and they put their heart into it. It’s a joy to work with them.”

Health literacy and the ability of families to understand and translate that understanding into quality care are all critical in terms of outcome. –David Galloway, M.D.

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News, Honors and Awards

BHATIA RECEIVES AWARDS IN CANCER RESEARCH Smita Bhatia, M.D., MPH, Pediatric Hematology/Oncology, director of the University of Alabama at Birmingham’s (UAB) School of Medicine Institute for Cancer Outcomes and Survivorship and vice chair for Outcomes Research in the Department of Pediatric Oncology, has received an Outstanding Investigator Award from the National Cancer Institute (NCI). The highly competitive award will enable Bhatia and her team to continue making promising advancements in pediatric oncology. Bhatia received a seven-year, $6.2 million grant to continue her research into how personalized treatment of childhood cancer can further minimize toxicity. The award provides funding to investigators with exceptional records of productivity in cancer research to continue or embark upon new projects of unusual potential in cancer research. Award recipients are cancer researchers who have served as principal investigators on an NCI grant for the last five years and have demonstrated outstanding productivity. Bhatia has also been selected to receive the Second Annual Northwestern Mutual Award for Excellence in Childhood Cancer Survivorship. Bhatia was recognized at the 2019 American Society of Pediatric Hematology/Oncology (ASPHO) Conference in New Orleans, Louisiana, in May. ASPHO has partnered with the Northwestern Mutual Foundation to administer this award, which in its second year recognizes an individual who is translating research findings into intervention-based approaches and/or making outstanding contributions to the clinical care of survivors of childhood cancer. LEBENSBURGER NAMED INCOMING CRTI CO-DIRECTOR Jeffrey Lebensburger, D.O., Pediatric Hematology/Oncology, has been selected to serve as the incoming Clinical Research Training Institute (CRTI) co-director for the American Society of Hematology. Lebensburger will serve as incoming co-Director for a one-year term beginning July 1, 2019. After serving as the incoming co-director, he will serve as junior co-director for a one-year term beginning July 1, 2020 and then serve as senior co-director for a one-year term beginning July 1, 2021. CARLO ELECTED AS COUNCIL MEMBER OF THE AMERICAN PEDIATRIC SOCIETY Wally Carlo, M.D., Neonatology, has been elected as Council Member of the American Pediatric Society. He will serve a five-year term from May 2019 to May 2024.

KHATRI, SCHWARTZ NAMED BIRMINGHAM PARENT FAVORITE KIDS’ DOCS Snehal Khatri, M.D. and Justin Schwartz, M.D., Developmental and Behavioral Pediatrics, were named among Birmingham Parent magazine’s Favorite Kids’ Docs in 2018. Birmingham Parent readers nominated Khatri and Schwartz for providing the best care for their children. They were recognized along with other honorees in the December 2018 issue of Birmingham Parent.

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GUIMBELLOT, MAGRUDER, PERNELL TAKE PART IN PROFESSIONAL DEVELOPMENT SERIES Jennifer Guimbellot, M.D., Teri Magruder, M.D., Pediatric Pulmonology, and Brandi Pernell, DNP, Pediatric Hematology/Oncology, participated in the UAB School of Medicine Office for Diversity and Inclusion’s Transforming Success professional development series. Created by psychologists Lisa Graham and Julie McDonald, Transforming Success applies the essential “primer” every leader needs to prepare them for future opportunities and development. The series began in January 2019 and concluded in April. AUSTIN INVITED TO APA LEADERSHIP INSTITUTE FOR WOMEN IN PSYCHOLOGY Heather Austin, Ph.D., Adolescent Medicine, has been invited to participate in the American Psychological Association (APA) Leadership Institute for Women in Psychology (LIWP). The APA Committee on Women in Psychology established the APA LIWP in 2008 to prepare, support and empower women psychologists as leaders to promote positive changes in institutional and organizational life and to increase the diversity, number, and effectiveness of women psychologists. ROSS ELECTED TO APS MEMBERSHIP Shannon Ross, M.D., Pediatric Infectious Disease, has been elected to the American Pediatric Society (APS). APS membership is reserved for individuals who are child health leaders, teachers, scholars, policymakers and/or clinicians who make important contributions to pediatrics. Ross’ membership began on January 1, 2019 CASAZZA REVEIVES RESEARCH VOUCHER, INNOVATION AWARD Krista Casazza, Ph.D., Adolescent Medicine, has been awarded a Center for Clinical and Transitional Science Research Voucher for her application titled “Culinary medicine intervention to empower pre-adolescent girls to help their families to improve nutrition literacy, self-image and overall well-being.” This voucher will be used in a study involving Casazza’s partnership with Girls Inc. Casazza also received a CTL-QEP Teaching Innovation Award for her application titled “Integrating Research and Service Learning into a Team Environmental Approach to Improve Community Health Literacy.” The goal of this approved proposal will disseminate to service learning classes related to health that have the capacity to implement a research project into their curriculum, particularly focused on improving aspects of health literacy in vulnerable/underserved populations. UAB PEDIATRIC SPECIALISTS ELECTED TO AOA HONOR MEDICAL SOCIETY Four UAB pediatric specialists have been elected to the Alpha Omega Alpha (AOA) Honor Medical Society, a medical professional organization that recognizes and advocates for excellence in scholarship and the highest ideals in the profession of medicine. The official induction ceremony was held on March 14. The newly elected members are Michael Barnett, M.D., Palliative Care; Tamera Coyne-Beasley, M.D., Adolescent Medicine; Shawn Gilbert, M.D., Orthopedic Surgery; and Tina Simpson, M.D., Adolescent Medicine.

ALEXANDER NAMED A PITTMAN SCHOLAR Matthew Alexander, Ph.D., Pediatric Neurology, has been selected as Pittman Scholar in the UAB School of Medicine. This esteemed group was created to honor the legacy of James A. Pittman, Jr., the longest-serving dean in the school’s history. Pittman was an outstanding physician and scientist, and is also remembered as a lively and energetic teacher and mentor of students and faculty. As a Pittman Scholar, Alexander will receive funding to support his research or scholarly enrichment.

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AMBALAVANAN RECEIVES ENDOWED CHAIR IN NEONATOLOGY Namasivayam Ambalavanan, M.D., Neonatology, has been named the first recipient of the Virginia Walker Jones Endowed Chair in Neonatology. The chair honors the outstanding contribution of “Ambal,” both locally and nationally, as well as the long-standing service of Virginia Walker Jones to the Children’s of Alabama Board of Trustees. LANDIER SELECTED AS 2019 DISTINGUISHED ALUMNI OF UCLA SCHOOL OF NURSING Wendy Landier, Ph.D., RN, Pediatric Hematology/Oncology, has been chosen as the recipient of the 2019 UCLA School of Nursing Distinguished Alumni Award for Excellence in Research, Platinum Bruin. Dr. Landier was selected for conducting an outstanding and renowned program of research, and advancing the practice of nursing health and healthcare through scholarly research. Honorees in this category exemplify the highest caliber associated with a UCLA School of Nursing degree, and excellence and dedication in the profession. An acceptance ceremony will be held on April 27 in Los Angeles, California, at the UCLA Luskin Center. COYNE-BEASLEY NOMINATED TO NASEM CONSENSUS STUDY COMMITTEE Tamera Coyne-Beasley, M.D., Adolescent Medicine, was nominated and appointed to a consensus study committee on Applying Lessons of Optimal Adolescent Health to Improve Behavioral Outcomes for Youth with the Board on Children, Youth and Families at the National Academies of Sciences, Engineering and Medicine (NASEM). The NASEM received and considered over 180 nominations for this consensus comittee. UAB DEPARTMENT OF PEDIATRICS FACULTY EXCELLENCE AWARDS ANNOUNCED The UAB Department of Pediatrics honored 11 faculty members as part of its 2018 Faculty Excellence Awards. The awardees have attained a level of excellence recognized by their peers due to their exceptional contributions to the development of the department and, in turn, the achievers of tomorrow – our children. The 2018 awardees are:

Educational Achievement Award: Chrystal Rutledge, M.D., Pediatric Critical Care

Service Achievement Award: Terry Wall, M.D., Academic General Pediatrics

Mentoring Achievement Award: Annalise Sorrentino, M.D., Pediatric Emergency Medicine

Research Achievement Award: Wally Carlo, M.D., Neonatology

Community Pediatric Educator Award: Hugh Cheek, M.D., Pediatrics West

Lifetime Achievement Award: Raymond Lyrene, M.D., Pediatric Pulmonology, Retired, and Edward Colvin, M.D., Pediatric Cardiology

Team Excellence Award: The Infectious Diseases Congenital CMV Research Team – Karen Fowler, DrPH, Shannon A. Ross, M.D., Suresh B. Boppana, M.D., and William J. Britt, M.D. (not pictured)

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2019 KPRI AWARDS ANNOUNCED Children’s of Alabama and the Kaul Pediatric Research Institute (KPRI) are pleased to announce the 2019 awards. The major goal of the KPRI grant program is to allow investigators to obtain data that will advantage applications for additional extramural funding. This will bring new knowledge to the care of children, leverage the investment of the KPRI, and allow projects to be competitive for the very best science on the national stage. A second, but also important, goal is to ensure that a dedicated funding source is available to unique segments of the pediatric research, education and quality improvement enterprise. This year, two categories of grants were funded – New Investigator Awards and Established Investigator Awards. All funded applications are directed toward the improvement of child health care. The 2019 awardees are: New Investigator Award Ammar Alishlash, M.D. Assistant Professor Pediatric Pulmonary & Sleep Medicine Prostacyclin Agonist Therapy for Acute Chest Syndrome in Sickle Cell Mouse Model Emily E. Johnston, M.D., MS Assistant Professor Pediatric Hematology/Oncology End-of-Life Care of AL Children with Cancer: Disparities and Parent Priorities Michael A. Lopez, M.D., Ph.D. Assistant Professor Pediatric Neurology Smad8 in Dystrophic Muscle Disease & Its Role in MicroRNA Regulation & Disease

Donna L. Murdaugh, Ph.D. Assistant Professor Pediatric Hematology/Oncology

A Longitudinal Pilot Study Examining Neurocognitive Outcomes in Survivors of Acute Lymphoblastic Leukemia Before and After a Cognitive Remediation Program

Gabriela R. Oates, Ph.D. Assistant Professor Pediatric Pulmonary & Sleep Medicine Technology-Enabled Patient Support System for Self-management of Pediatric Cystic Fibrosis Swetha G. Pinninti, M.D. Assistant Professor Pediatric Infectious Disease Significance of co-infection with CMV and STI’s during pregnancy

Aman Wadhwa, M.D. Instructor (7/1/2019) Pediatric Hematology/Oncology Body Composition and Adverse Outcomes in Childhood Cancer

Established Investigator Award Shannon A. Ross, M.D., MSPH Associate Professor Pediatric Infectious Disease Neuroimaging Findings and Hearing Outcome in Asymptomatic Congenital CMV Infection

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1600 7th Avenue South Birmingham, Alabama 35233

10TH ANNUAL ADVANCEMENT IN THE CARE OF PEDIATRIC CANCER & BLOOD

DISORDERS SYMPOSIUM AT CHILDREN'S OF ALABAMA

SAVE THE DATE!

Bradley Lecture Center Children's Hospital of Alabama Birmingham, Alabama 35233

October 18, 2019

CELEBRATING 10 YEARS

For more information or to register, visit www.childrensal.org/cancer