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PEDIATRICS A DVA NCING

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HELPING CHILDREN MEET SPEECH AND LANGUAGE MILESTONES THROUGH COCHLEAR IMPLANTS ADVANCING PEDIATRICS IS

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EMBRACING MAGNET-BASED GROWING ROD TECHNOLOGY FOR EARLY ONSET SCOLIOSIS GUIDING THE WAY IN FETAL CARDIOLOGY BEST PRACTICES

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A Children’s National expert has spent the last decade researching leukodystrophies— genetic conditions affecting about one in 7,000 children.

ON BEHALF OF Children’s National, I am pleased to share the Fall 2014 issue of Advancing Pediatrics.

This issue spotlights just a few of the innovative programs ongoing at Children’s National that are making profound differences in the health and well-being of our young patients.

In the Washington, DC, area, three out of 1,000 children have severe hearing loss, which can impede social and cognitive development. This issue highlights our experience in performing cochlear implantations for children as young as 7 months. Through this early intervention, Children’s helps young patients with profound hearing loss overcome potentially life-defining barriers.

Our commitment to innovations that produce better care and better outcomes is exemplified in our work on novel treatments for children with early-onset scoliosis. “A MAGEC Touch: A New Way Forward for Spinal Growing Rods,” discusses Children’s experience as

Researchers at the Sheikh Zayed Institute for Pediatric Surgical Innovation are examining the role imaging can play in identifying existing and potential obesityrelated comorbidities in pediatric patients.

15 ECMO

Catherine Bollard and her team treated a patient with T cell therapy for the first time at Children’s National this spring.

14 INNOVATIONS

10 LEUKODYSTROPHIES

6 IMMUNOTHERAPY

TABLE OF CONTENTS

EMAIL

PHONE

The ECMO Program at Children’s National has forged international relationships to train providers and expand access to the potentially lifesaving modality.

one of the first adopters of the magnetically controlled growing rods used to treat these patients. This inventive procedure bridges treatment spanning the years between the initial lengthening surgery and spinal fusion, reducing the need for multiple surgical procedures.

Finally, I invite you to read about Catherine Bollard, MBChB, MD, and her work introducing novel cell therapy protocols at Children’s National. Less than a year after establishing an immunotherapy research and development program here, Dr. Bollard and her team treated a patient with T cell therapy for the first time.

This protocol will be an increasingly important alternate to antiviral medications in the future.

At Children’s National, we challenge ourselves to embrace innovation in everything we do. By encouraging forward thinking and sharing our success, I am confident we can improve health outcomes for children everywhere.

Sincerely,

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Kurt Newman, MD PRESIDENT AND CHIEF EXECUTIVE OFFICER

Mark Batshaw, MD EXECUTIVE VICE PRESIDENT AND PHYSICIAN-IN-CHIEF

Lauren Fisher VICE PRESIDENT OF COMMUNICATIONS, PUBLIC RELATIONS, AND MARKETING

Susan Muma MARKETING AND PHYSICIAN RELATIONS DIRECTOR

Sienna Tomko MANAGING EDITOR

IN PARTNERSHIP WITH TRUE NORTH Haley Johnson ACCOUNT MANAGER

Eric Jackson CREATIVE DIRECTOR

Amy Vitrano DESIGNER

Kurt Newman, MD

Angela Williams COPY MANAGER

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Visit www.ChildrensNational.org/AP14-Survey to complete a brief survey by Nov. 11.

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2 TABLE OF CONTENTS

Thomas Crocker, Michael Ferguson, Valerie Lauer, Katy Mena-Berkley, Melissa Moore, Tiffany Parnell, Colin Stayton, Rachel Stewart, Jennifer Webster CONTRIBUTING WRITERS

People IN THE NEWS ||| NEWS NOTES | INTERNATIONAL CONSORTIUM PROVIDES $2M FUNDING FOR PHASE 1 CLINICAL TRIAL OF REVERAGEN DMD DRUG A novel anti-inflammatory in development for the chronic treatment of Duchenne muscular dystrophy

by ReveraGen BioPharma, a private spinoff company from Children’s National Health System, has received $2 million in funding from four nonprofit organizations. The Muscular Dystrophy Association, based in Chicago, and three British organizations, the Joining Jack Foundation, The Duchenne Research Fund, and the Duchenne Children’s Trust, provided Phase 1 clinical trial funding for the first in-human studies of VBP15. The funding is slated for the Phase 1 clinical trial for the lead compound known as VBP15, an oral drug that has shown efficacy in animal models of Duchenne muscular dystrophy through anti-inflammatory and membrane stabilization.

CHILDREN’S NATIONAL AND PARTNERS RECEIVE HEALTH CARE INNOVATION AWARD GRANT Children’s National has been named a recipient of a Center for Medicare & Medicaid Innovation award to improve healthcare delivery for children with complex medical needs. The grant, aimed at advancing care coordination models, was awarded to the Children’s Hospital Association (CHA) and 10 pediatric hospital partners. Children’s National also will serve as CHA’s primary administrative partner for the grant. CHA and its hospital partners, including Children’s National, will receive a $23 million Health Care Innovation Award to test “Coordinating All Resources Effectively (CARE).” The effort aims to inform sustainable change in healthcare delivery through new payment models supporting improved care and reduced costs for children with medical complexity.

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BRIAN JACOBS, MD, Vice President, Chief Information Officer, and Chief Medical Information Officer, Children’s National, was recognized by Health Data Management as CIO Visionary.

While serving dual roles for Children’s National, Dr. Jacobs expanded electronic health record (EHR) technology across inpatient departments, ambulatory clinics, and regional data exchange, including 240 independent physicians, as well as advocated the use of geographic information systems (GIS). Most recently, Dr. Jacobs merged standard EHR data with GIS software, which integrates health data and geospatial coordinates to gather insight into childhood obesity and offer potential interventions.

KATHLEEN E. CHAVANU GORMAN, MSN, RN, NEA-BC, Executive Vice President and Chief Operating Officer of Patient Care Services at Children’s National, was named a fellow of the elite American Academy of Nursing. She is one of five Children’s National nurses to receive this prestigious fellowship, given exclusively to the most accomplished nurses who embody the philosophy of nursing and patient care and have committed their careers to improving both the practice of nursing and healthcare delivery.

MENDEL TUCHMAN, MD, Chief Research Officer, Children’s Research Institute at Children’s National, leads a team that was awarded a $650,000 grant from the Eunice Kennedy Shriver National Institute of Child Health and Human Development to determine whether an amino acid-like chemical can be used to improve the clinical outcome of genetic diseases characterized by elevated levels of ammonia in the blood, such as hyperammonemia.

Dr. Tuchman and his team have found preliminary evidence that NCG also can reduce blood ammonia levels in patients with a number of inherited metabolic diseases. Dr. Tuchman holds the Mary Elizabeth McGehee Joyce Chair in Genetics Research at Children’s National. He conducts translational research in biochemistry and molecular biology of nitrogen metabolism and inborn errors of metabolism.

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IN THE NEWS

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THE

SOUND of a CHANGED

LIFE

BY COLIN STAYTON

Hearing loss dramatically impacts a child’s cognitive, linguistic, and psychosocial development, making the pursuit of relationships and gainful employment more difficult. Cochlear implants can help young patients overcome potentially life-defining barriers.

COCHLEAR IMPLANT DEVICES convert acoustic signals to electric signals that are then delivered to the cochlear nerve endings through a set of electrodes, enabling the brain to discriminate sounds and frequencies. A speech processor arranges sounds processed through a microphone and transmits them to a receiver/ stimulator, and signals are then sent to the auditory nerve through an electrode array surgically threaded into the cochlea, where as many as 24 electrodes stimulate the cochlear nerve.

According to Brian Reilly, MD, Co-director of the Cochlear Implant Program at Children’s National Health System, three of every 1,000 children in the greater Washington, DC, area have hearing loss that could benefit from cochlear implantation.

Diego Preciado, MD dpreciad@childrensnational.org

“Children who aren’t meeting speech and language milestones, or who have risk factors for hearing loss such as premature birth or prolonged intubation, are indicated for comprehensive hearing evaluation,” Dr. Reilly says. “The earlier intervention is started, the more likely it is children will develop language and social skills at a normal rate and to their fullest capacity.”

THE ADAPTABLE BRAIN Early intervention is key for cochlear implantation, as a child’s neuroplasticity peaks within the first two years of life. Over time, the brain’s ability to process and adapt to new stimuli declines. Without sensorineural stimulation, the auditory cortex begins to disengage and can no longer process sounds into meaningful data.

Brian Reilly, MD breilly@childrensnational.org

4 COCHLEAR IMPLANTS

“We’ve implanted devices in infants as young as 7 months,” says Diego Preciado, MD, Director of the Cochlear Implant Program at Children’s National. “Receiving a cochlear implantation within a year of diagnosis improves clinical outcomes, as measured by the child’s capacity to appreciate and reciprocate vocal and melodic sounds.”

WHO IS A CANDIDATE? At the Cochlear Implant Program at Children’s National, infants identified with potential hearing loss following an otoacoustic emissions test or automated auditory brainstem response measure are further evaluated utilizing otoscopic visualization of the tympanic membrane. Specialized imaging of the skull base temporal bone also is performed to assess the inner ear anatomy, with focused attention paid to the cochlear auditory (Cranial VIII) and facial (Cranial VII) nerves.

NOT YOUR TYPICAL PRINCESS

Three-year-old Molly is obsessed with the movie “Frozen.” And like the fearless princess in Disney’s icy animated epic, there’s something very special about Molly. She was born deaf.

“She failed her newborn hearing screening, but the doctors at the hospital where she was born kept saying, ‘Oh, she’ll be fine,’” says Tara Swaminatha, Molly’s mother. “We went from expert to expert, and none of them could tell us definitively if she had hearing loss or not.

We got a lot of inconsistent information.”

Patients with a severe to profound hearing loss undergo a trial to assess the effectiveness of hearing aids. Infants who do not show improvement with amplification also are evaluated by the Cochlear Implant Committee. This group of audiologists, speech therapists, and otolaryngologists determines each infant’s candidacy for cochlear implantation. Ideal candidates are usually children who:

++ Are between age 6 months and 2 years ++ Are diagnosed with bilateral severe to profound hearing loss ++ Have bilateral sensorineural hearing loss ++ Have adequate neurological function and central

Tara and her husband, Bob Kaplan, were eventually referred to Diego Preciado, MD, at Children’s National Health System.

processing ability

++ Have present cochlear anatomy, including a normal caliber

“He looked through all the misinformation we had been given, and his face showed genuine sympathy,” Tara says. “He was the first doctor who understood our desperation and wanted to help.”

cochlear nerve

LEADING THE WAY Drs. Preciado and Reilly perform approximately 50 pediatric implantations annually—making Children’s National the largest pediatric cochlear implant program in the greater Washington, DC, area. The procedure involves making a small incision behind the ear and drilling away a portion of the temporal bone to allow the receiver-stimulator to sit flush with the skull surface. The electrode array is threaded into the cochlea through either the round window or a permanent hole called a cochleostomy. The device is tested perioperatively and fully activated following surgical recovery, typically within a few weeks. Once the device is activated, patients undergo auditory habilitation with specially trained speech-language therapists. Some patients require a combination of sign language and cued speech to effectively communicate, while others experience fully normalized verbal speech acquisition.

Extra-ordinary

After a thorough diagnostic evaluation, Dr. Preciado determined Molly did, in fact, have profound bilateral hearing loss. He expedited her hearing aid trial and cleared her for cochlear implantation just shy of her eight-month birthday. Today, after several years of speechlanguage therapy, Molly is a thoroughly ordinary girl. And that’s what makes her extraordinary.

“Most people who meet her have no idea she’s deaf,” Tara says. “She speaks better than some of her peers who have typical hearing.”

Tara says her daughter is showing interest in reading and loves listening to music. One of the most encouraging moments occurred earlier this year.

“When we turn on the device for the first time, parents often say it’s like we turn a light on in the brain,” Dr. Reilly says. “Hearing is so important because it allows us to interact with the world, communicate, and appreciate sounds and music. The cochlear implant is a truly remarkable innovation.”

“She came home from school one day singing a song from the ‘Frozen’ soundtrack,” Tara recalls.

“When she was younger, we didn’t know if she’d ever be able to hear, let alone talk. Now she sings all over the house, in the car—everywhere. It’s a beautiful thing to hear.”

The Cochlear Implant Program evaluates children at any age and hearing level. To speak with the Cochlear Implant team, call 202-476-2159. To learn more about the program, visit www.ChildrensNational.org/AP-CI.

COCHLEAR IMPLANTS

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JUST THE BEGINNING:

RECOGNIZING AN IMMUNOTHERAPY

Breakthrough

BY THOMAS CROCKER

Less than a year after establishing an immunotherapy research and development program at Children’s National Health System, Catherine Bollard, MBChB, MD, and her team treated a patient with T cell therapy for the first time at the hospital this spring.

6 IMMUNOTHERAPY

DR. BOLLARD—DIRECTOR OF the Program for Cell Enhancement and Technologies for Immunotherapy (CETI) at Children’s National—brought a dozen years of immunotherapy experience to Children’s National from Baylor College of Medicine in the summer of 2013, when she established CETI.

“The patient is making progress, but much work remains,” Dr. Bollard says. “The ultimate goal is to clear the CMV viral load and restore a working, functional immune system to him, providing immunity to CMV and other problematic viruses that affect patients with compromised immune systems.”

Dr. Bollard and her team worked tirelessly to introduce novel cell therapy protocols to Children’s National and explore new cellular therapy avenues. Their dedication paid off in the spring of 2014, when The Children’s Hospital of Philadelphia (CHOP) referred a 6-month-old boy with severe combined immunodeficiency (SCID) and a life-threatening cytomegalovirus (CMV) infection to Children’s National.

THE START OF SOMETHING BIG A second child—a 9-month-old boy with SCID and a CMV infection who was an established Children’s National patient—received T cell therapy shortly after the first case. Most recently, clinicians treated a patient from The Johns Hopkins Hospital with leukemia and refractory CMV after a bone marrow transplant. Next on the agenda for Dr. Bollard and CETI: treating more patients while continuing to develop T cells that can fight leukemia, lymphoma, inflammatory bowel disease, brain cancer, and human immunodeficiency virus.

A SAFER ALTERNATIVE When the child arrived at Children’s National, the CMV infection was gaining strength, and his treatment options were limited. Clinicians at CHOP knew of Dr. Bollard’s cellular therapy expertise and thought the patient might benefit from T cell therapy, which was unavailable at their hospital.

“The CMV was completely resistant to standard drug therapies,” Dr. Bollard says. “The patient had received a bone marrow transplant from his mother, but the immune system takes time to recover after transplant, placing the patient at high risk for infection. The patient’s viral load was climbing, and patients like him are at very high risk of dying from CMV disease that can affect the lungs, gut, eyes, and other organs.”

Administering greater dosages of antiviral medications to patients like the 6-month-old boy can create new problems.

“These drugs aren’t benign, especially at increased dosages,” says David Jacobsohn, MD, ScM, Division Chief of Blood and Marrow Transplantation at Children’s National, which collaborates with CETI to develop T cell therapies for patients after stem cell transplant. “They have a lot of toxicity, and can be particularly harmful to the bone marrow and kidneys. It’s likely the child would have had problems either from the infection or the medications used to treat it, so it’s fortunate we had a novel therapy to offer.”

The child’s mother sent a blood sample to the CETI Good Manufacturing Practice Laboratory. During a 10-day process, a researcher expanded T cells—white blood cells that play key roles in the immune system’s response to infection—derived from the mother’s blood to manufacture virus-specific T cells to attack the CMV. As of July 2014, the patient had received two outpatient T cell injections at Children’s National, and his CMV levels had declined to less than 13,000 copies per milliliter of blood from more than a million copies prior to the therapy.

“We want T cell therapy to continue growing and become a more integral part of the care we deliver to children, and over time, further demonstrate that providing antiviral immunity with cellular therapy is better and safer than long courses of antiviral medications,” Dr. Jacobsohn says.

“We would love to arrive at a day when most patients preventively receive this therapy.”

To learn about other ways Children’s National is changing pediatric healthcare through research, visit InnovationInstitute.ChildrensNational.org/AP-Tcell.

NO EXPOSURE? NO PROBLEM

A novel component of T cell therapy at Children’s National Health System is a protocol to manufacture virus-specific T cells from those derived from the blood of donors who have never been exposed to the virus in question.

“It is difficult to find stem cell transplant donors for people who have rare tissue types and often belong to ethnic minorities,” says Catherine Bollard, MBChB, MD. “Cord blood is a great donor source for those patients, but because the cord blood T cells are naïve, patients have high incidences of viral infection with associated morbidity and mortality after transplant.

“With that problem in mind, we developed cord bloodderived virus-specific T cells. We also realized it wasn’t just cord blood transplant patients who had high incidences of viral infection, but anyone who had a transplant from a virus-naïve donor. That led us to investigate taking T cells from virus-naïve adults. Our investigations began with cord blood, but now, we’ve extended our protocol to take T cells from any donors who are virus naïve and train those cells to be virus and cancer killers.”

IMMUNOTHERAPY

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A MAGEC

Touch:

A New Way Forward for Spinal Growing Rods

BY THOMAS CROCKER

Children’s National Health System is an early adopter of a magnet-based spinal growing rod technology that could become the gold standard for treating severe early onset scoliosis.

8 SCOLIOSIS

GROWING RODS HAVE become effective tools for children whose spinal curvature is too significant to control with bracing or casting.

The rods—which are surgically attached to the spine above and below the curve and then lengthened during follow-up surgical procedures—allow the spine to continue growing while managing the curve until the child is old enough for spinal fusion.

The problem: Children must bear the physical and psychological burden of undergoing lengthening procedures every six to 12 months until they are skeletally mature enough to have spinal fusion— typically around age 10 for girls and age 12 or 13 for boys.

“Traditional growing rods work, but they require multiple surgeries that increase complication rates and time spent in the hospital,” says Matthew Oetgen, MD, Interim Division Chief of Orthopaedic Surgery and Sports Medicine and Director of Orthopaedic Research at Children’s National. “We treat many children each year who have or are candidates for growing rods, so it’s important for us to embrace new technology to make the lengthening process easier and less painful for children while decreasing morbidity.”

Dr. Oetgen and his colleagues believe they’ve found just such a technology in the MAGEC (MAGnetic Expansion Control) Spinal Bracing and Distraction System by Ellipse Technologies, Inc. REVOLUTIONIZING LENGTHENING MAGEC rods are similar to traditional growing rods in that an orthopaedic surgeon attaches them to the spine through an incision in the patient’s back, a procedure requiring several days of inpatient recovery. Unlike with conventional growing rods, however, the surgeon lengthens the MAGEC rods in minutes during subsequent outpatient visits every three or four months using the MAGEC External Remote Controller (ERC)—no surgery required. The ERC communicates with the implants via a magnetic connection.

Candidates for MAGEC are children younger than age 10 with severe progressive scoliosis.

“Bracing won’t assist a 2- to 7-year-old child with curvature in excess of 50 or 60 degrees,” says Jeffrey Hanway, MD, orthopaedic surgeon and sports medicine physician, Vice Chair for Clinical Affairs, Division of Orthopaedic Surgery and Sports Medicine, at Children’s National, and Chief Surgical Officer at Pediatric Specialists

of Virginia. “If a child is a candidate for growing rods, I’m not aware of any contraindications for MAGEC. I envision this system becoming the benchmark for growing rods.”

Like traditional growing rods, MAGEC is a means, not an end—the system provides a bridge treatment spanning the years between the initial lengthening surgery and spinal fusion.

ON THE FOREFRONT OF CHANGE Following MAGEC’s approval by the U.S. Food and Drug Administration in February 2014, surgeons at Children’s National performed two of the first 15 MAGEC implantations in the country, and the first in the greater Washington, DC, area. Dr. Hanway and Shannon Kelly, MD, orthopaedic surgeon, each performed a case at Children’s National on May 6.

“My patient was a somewhat atypical candidate because he was 10 years old, but he was a young 10, skeletally speaking,” Dr. Hanway says. “A brace adequately managed his curve for a while, but by this spring, a slow increase in the bend had pushed it past 50 degrees. When MAGEC became available, I said, ‘This is ideal for him.’ If he can continue with MAGEC for two or three years, he’ll be in a good place in terms of readiness for spinal fusion.”

To refer a patient to the Spine Program at Children’s National, call 202-476-2112.

OVERTURNING THE LAW?

Use of traditional growing rods for treating progressive early onset scoliosis is subject to the law of diminishing returns—with each postimplantation procedure to manage the spine’s growth, a little less lengthening is possible.

“After six or seven lengthenings, the spine starts getting pretty stiff, sometimes to the point that we can’t lengthen it much more,” says Jeffrey Hanway, MD. “That means we’re limited to four to six years of annual or biannual adjustments.”

It is too soon to know whether lengthening the spine with the MAGEC (MAGnetic Expansion Control) Spinal Bracing and Distraction System will allow the spine to remain pliable enough for an additional period of use, but physicians are hopeful.

“Instead of going in for lengthening procedures every six to 12 months, MAGEC patients undergo small lengthenings on a more frequent basis—every three to four months,” says Matthew Oetgen, MD. “We hope that may help us avoid the problem of the stiffening spine and allow us to achieve more growth. As we study this technology, we’ll be interested to see if that hypothesis proves true. We might even find MAGEC is more effective in the long run than traditional growing rods.”

SCOLIOSIS

9

SHEDDING

LIGHT on

Leukodystrophies

BY JENNIFER WEBSTER

Adeline L. Vanderver, MD, Director of the Myelin Disorders Clinic at Children’s National Health System, has spent the last decade researching leukodystrophies—genetic conditions affecting about one in 7,000 children.

LEUKODYSTROPHIES, ALSO KNOWN as inherited myelin disorders, involve degeneration of the myelin sheath protecting nerve cells.

“Nerves need infrastructure to project signals over long distances,” Dr. Vanderver says. “Leukodystrophies occur when the body cannot make or maintain myelin, the fatty substance insulating nerve cells.”

Patients with insufficient myelin progressively lose motor skills. Eventually, they cannot care for themselves and often face severe illness, multiple hospitalizations, and death.

DIAGNOSIS AND TREATMENTS At the Myelin Disorders Clinic, Dr. Vanderver helps families obtain diagnoses for their children while assembling patient profiles into a biorepository to identify possible genetic causes of the disease. Children’s National also offers treatment for symptoms of the condition, including breathing problems, constipation, reflux, sleep difficulties, and spasticity.

10 LEUKODYSTROPHIES

“Thanks to the leadership of Dr. Vanderver and those like her, we have been able to more precisely identify the type—and in some cases the cause—of these rare diseases,” says Roger Packer, MD, Senior Vice President of the Center for Neuroscience and Behavioral Medicine at Children’s National. “In the days ahead, more precise therapies could dramatically improve outcomes for children with leukodystrophies.”

“Because leukodystrophies are perceived as rare, young scientists may not focus on the field,” Dr. Vanderver adds. “My hope is that we can raise awareness about these conditions so more young professionals choose to specialize in these diseases and physicians in the community are more comfortable offering an initial diagnosis.”

To refer a patient to the Myelin Disorders Clinic at Children’s National, call 202-476-4975.

Visit www.ChildrensNational.org/AP-Myelin to learn more about conditions treated in the Myelin Disorders Clinic.

Heads TURNING

BY COLIN STAYTON

A proposal to adopt new standards for helmet safety testing will offer significant improvement for sports concussion prevention.

THE NATIONAL OPERATING Committee on Standards for Athletic Equipment (NOCSAE) is set to develop new testing criteria for athletic helmets that will take into consideration both the linear and rotational forces applied to the head. NOCSAE says this additional set of tests will better gauge how well a helmet might prevent concussion.

“The current testing standard is called a headdrop test, and it only looks at how well a helmet prevents skull fractures and other severe forms of head trauma caused by straight-on impact,” says Gerard Gioia, PhD, Division Chief of Neuropsychology and Director of the SCORE (Safe Concussion Outcome, Recovery, and Education) Program at Children’s National Health System. “But concussion is caused by both linear and rotational forces that make the brain turn inside the skull.”

PUTTING A SPIN ON THE STANDARD NOCSAE’s adoption of additional testing will examine helmets that also mitigate the rotational acceleration that factors into concussion. Experts hope these new testing standards will pave the way for next-generation headgear that is designed to counteract rotational impact. In the meantime, Dr. Gioia says pediatric primary care providers will continue to play a vital role in early diagnosis and management of concussion, thereby minimizing the adverse effects.

“Pediatric providers need to actively embrace evidence-based standards for evaluating and managing children with concussions,” Dr. Gioia says. “There are tools out there—many of which have been developed by experts right here at Children’s National—that can aid community pediatricians in proper diagnosis.”

For additional resources from the SCORE Program at Children’s National, visit www.ChildrensNational.org/AP-SCORE.

A NATIONAL IMPACT

Gerard Gioia, PhD, participated in the Healthy Kids and Safe Sports Concussion Summit at the White House this past May. The summit brought together some of the nation’s leading experts in sports safety to highlight the importance of youth concussion prevention and management.

The summit was a direct response to a recent Institute of Medicine report noting the high rate of concussions among school-aged children and teens. As one of the panelists, Dr. Gioia spoke about the role parents and coaches can play in learning to recognize and respond to suspected concussions, reducing these injuries and their long-term effects.

CONCUSSION

11

BY TIFFANY PARNELL

SHAPING THE FUTURE

of Fetal Cardiology

An American Heart Association statement authored by a Children’s National Health System physician and published online in Circulation in April 2014 contains the first set of clinical guidelines for the evolving specialty of fetal cardiology.

TO LEARN MORE about these guidelines, Advancing Pediatrics recently spoke with lead author Mary T. Donofrio, MD, Director of the Fetal Heart Program and Medical Director of the Critical Care Delivery Program for the Fetal Medicine Institute, as well as Director of the Advanced Cardiac Imaging Fellowship and Co-director of the Cardiac Neurodevelopmental Outcome Program at Children’s National.

Q | W HAT WERE THE MAJOR OBJECTIVES OF THESE GUIDELINES? A | Our overarching goal was to establish guidelines for the diagnosis and treatment of fetuses with cardiovascular abnormalities. We also wanted to provide guidance for professionals on topics such as the diagnosis of congenital heart disease in utero, management of fetuses with cardiac abnormalities, and delivery room planning strategies to ensure a safer transition from fetal to postnatal life.

PHYSICIANS WITH QUESTIONS ABOUT THE GUIDELINES ARE WELCOME TO EMAIL DR. DONOFRIO AT MDONOFRI@CHILDRENSNATIONAL.ORG.

Q | IN ADDITION TO IMAGING AND OTHER ASPECTS OF FETAL CARE, THE STATEMENT TOUCHES ON THE IMPORTANCE OF MATERNAL AND FAMILIAL COUNSELING. DO YOU HAVE ANY ADVICE FOR PHYSICIANS REGARDING HOW TO ADDRESS EACH FAMILY’S EMOTIONAL NEEDS? A | Physicians need to provide honest medical information about the baby’s condition, including all possible outcomes. We also must be supportive and understanding. Medical professionals need to know that expectant mothers may experience depression and anxiety, which can affect both the pregnancy and their relationships with other family members. It’s important to see these families more than once during pregnancy to listen, answer questions, and offer support. The help of a mental health specialist may sometimes be needed.

Q | T HROUGH THE RELEASE OF THIS STATEMENT, WHAT WOULD YOU MOST LIKE OTHER PHYSICIANS TO LEARN ABOUT THE FIELD OF FETAL CARDIOLOGY? A | Each fetus is an individual patient, and fetal cardiology is a distinct field that spans disciplines within the medical profession, including obstetrics, maternal-fetal medicine, and pediatric cardiology. Fetal care should begin in utero and continue through delivery and into the postnatal period.

Collaboration throughout the continuum of care allows specialists from all disciplines to work together, which is what will improve the outcome of children with congenital heart disease.

To read the American Heart Association (AHA) scientific statement on the diagnosis and treatment of fetal cardiac disease written by a team of cardiac and obstetrical experts with lead author Mary T. Donofrio, MD, visit www.ChildrensNational.org/AP-AHA.

WHEN PASSION MEETS SPECIALTY

Mary T. Donofrio, MD, developed an interest in pediatric cardiovascular physiology and congenital heart disease while completing her medical degree at Mount Sinai School of Medicine. Her passion for caring and advocating for fetal patients and their families led her to Children’s National Health System, where she founded and directs the renowned Fetal Heart Program and is involved in many aspects of fetal care and relevant clinical cardiac research.

12 CARDIOLOGY

THE PEDIATRICIAN’S ROLE IN

Managing Childhood Grief

BY TIFFANY PARNELL

Children coping with loss have a unique set of needs that are often developmentally dependent. Pediatricians can play an important role in the grieving process by educating parents about normative responses and identifying children who may need additional support.

MOST CHILDREN DO not grasp the permanence of death until the end of their middle school years. As a result, the grieving process in children and adults often significantly differs.

“If a 3-year-old loses a parent, the child understands the parent is gone but may not understand why,” says Adelaide Robb, MD, Division Chief of Psychology and Behavioral Health at Children’s National Health System. “Even as late as early elementary school, children retain magical thinking, so they may feel guilty and think they are responsible for the death or believe their family member will return.”

UNDERSTANDING NORMATIVE REACTIONS Behavioral regression, which can include temper tantrums, thumb-sucking, or bedwetting, is a common expression of grief in young children. Physical complaints, changes in sleep patterns, anxiety, anger with a spiritual being or family members, confusion, and sadness also may occur in children of all ages. In addition, kids may shut down and refuse to talk about their loved one. It also is quite common for children to express that they want to die so they can see their loved one again.

“Every child is different, and there is no right or wrong way to grieve,” says Amanda Thompson, PhD, pediatric psychologist and Director of Patient Support Services in the Center for Cancer and Blood Disorders at Children’s National. “We encourage pediatricians to refer their patients if there is a significant and persistent change in the child’s behavior or personality. Expressions of wanting to die, although quite typical, should be taken seriously and warrant additional evaluation by a mental health professional.”

DELIVERING GUIDANCE TO GRIEVING FAMILIES Pediatricians supporting grieving children and their families should:

++

Be a role model for good communication.

When speaking with children about death, avoid euphemisms and provide brief, concrete explanations.

++

Remain abreast of community resources.

How parents cope with loss directly impacts their children. Keep an office resource list of supportive services for children and adults, and share the list with parents.

++

Encourage parents to maintain routines.

Returning to school, sports, camp, and other routines that add structure and meaning provides a source of normalcy and comfort for grieving children.

++

Recommend that families take a news break.

News coverage of mass casualties and other tragedies can further threaten a child’s sense of security.

To view slides from Dr. Thompson’s 2014 Future of Pediatrics presentation about this topic, visit www.ChildrensNational.org/APN-Grieve.

PSYCHOLOGY

13

Emphasizing Iodine’s Impact ON FETAL DEVELOPMENT

BY MELISSA MOORE

New recommendations advocated by a Children’s National Health System expert call for all pregnant women to take iodine supplements.

IN THE ARRAY of nutritional changes recommended for women, iodine is often left out of the equation. While as many as one-third of pregnant women in the United States are iodine-deficient, only 15 percent of expectant and breast-feeding mothers take iodine supplements.

MONITORING INTAKE Dr. Paulson recommends expectant mothers supplement their diets with least 150 micrograms of iodine per day.

“Any woman who is pregnant or who may become pregnant needs to have sufficient iodine to ensure appropriate thyroid gland function and hormone production,” says Jerome Paulson, MD, Medical Director for National and Global Affairs and Director of the Mid-Atlantic Center for Children’s Health and the Environment at Children’s National. “These hormones are essential for the normal brain development of a child in utero.”

“Many women take prenatal vitamins, but these may not contain iodine in a form readily absorbed by the body in an adequate dose,” Dr. Paulson says. “Physicians need to talk with their patients and prescribe potassium iodide supplements rather than kelp or another, less standardized source of the nutrient.”

To read about the consequences of iodine deficiency for pregnant women, visit www.ChildrensNational.org/AP-Iodine.

A BETTER

TOOL

for Identifying Obesity-related Comorbidities

BY VALERIE LAUER

Researchers at the Sheikh Zayed Institute for Pediatric Surgical Innovation at Children’s National Health System are examining the role imaging can play in identifying existing and potential obesity-related comorbidities in pediatric patients.

14 INNOVATIONS

OVER THE COURSE of a year, the team reviewed the images of 235 Children’s National patients, utilizing complex software developed by the National Institutes of Health to collect and analyze adipose volume measurements from abdominal CT (computed tomography) scans.

“We discovered that adipose tissue measurements are as effective as body mass index at predicting pediatric tendencies to develop certain conditions, such as high blood glucose levels and high systolic blood pressure,” says Marius George Linguraru, DPhil, Principal Investigator at the Sheikh Zayed Institute. “Unlike body mass index, the adipose volumes correlate with obesityrelated clinical conditions, such as high diastolic blood pressure, hypertension, and risk of ketoacidosis.”

LOOKING AHEAD Dr. Linguraru and his team use existing CT images to collect volume measurements. In the future, he hopes to expand this research to include other imaging modalities, such as MRI (magnetic resonance imaging), with the ultimate goal of developing a clinical tool to better assess pediatric risk for comorbidities as early as possible.

For more information about ongoing research at the Sheikh Zayed Institute, visit www.ChildrensNational.org/APN-SZI.

Global AMBASSADORS for Life Support

BY MICHAEL FERGUSON

The Extracorporeal Membrane Oxygenation (ECMO) Program at Children’s National Health System has forged international relationships to train providers and expand access to the potentially lifesaving modality.

WHEN BILLIE SHORT, MD, Division Chief of Neonatology and Medical Director of the ECMO Program at Children’s National, helped establish the nation’s first pediatric hospital ECMO program at Children’s National in 1984, the modality was still in its infancy. The hospital’s bioengineers played an integral role in inventing and developing components for the technology—some of Billie Short, MD which became standard on subsequent iterations of the device.

SPREADING THE WORD Even though ECMO has significantly improved survival for babies with reversible cardiac or respiratory conditions, the modality isn’t widely commercialized and awareness of its capabilities can be limited, according to Gary Oldenburg, MS, RRT-NPS, ECMO and VAD Program Manager.

“ECMO is a very specific, low-volume but high acuity process,” he says. “It’s

important that physicians know which critically ill patients can benefit from ECMO, so they can refer them for potentially lifesaving therapy.”

To educate the international medical community, Children’s National welcomes providers from across the globe to training symposiums and opens its doors for them to observe the program in operation. As ECMO innovators, Children’s National experts also continue to expand the technology’s horizons.

Recently, Oldenburg—in conjunction with the Extracorporeal Life Support Organization—assisted in the first Latin America ECMO training program.

Participants from Brazil, Chile, Costa Rica, Mexico, and Paraguay learned the intricacies of the modality so they could establish or fine-tune their hospital’s ECMO capabilities.

To learn more about the ECMO Program at Children’s National, visit www.ChildrensNational.org/ AP-ECMO.

A LIFESAVING TRADITION

For more than three decades, Children’s National Health System has played a role in educating providers about ECMO technologies and capabilities through an annual symposium. The 31st Annual Children’s National Symposium: ECMO and Advanced Therapies for Respiratory Failure in Keystone, Colorado, next February will feature a combination of didactic presentations, panel discussions, and short research presentations about neonatal, pediatric, and adult ECMO; the use of nitric oxide; and advanced ventilation techniques.

As ECMO technology has evolved, so has the symposium.

“In the program’s first year, we welcomed representatives from all seven ECMO programs in the United States—there were only about 30 people there,” says Billie Short, MD. “We’ve seen that number jump from 30 to approximately 350 people, who travel from around the world.”

Next year’s symposium will take place Feb. 22–26. For more information and to register, visit www.ecmomeeting.com.

ECMO

15

PAID

When: Wednesday, Dec. 10, 2014 Where: Marriott North Bethesda Conference Center Registration is FREE to Children’s National Health Network (CNHN) member practices and members of local AAP chapters (DC, MD, and VA).

• Coding Update: What’s New for 2015 • ICD-10 Readiness •W hat Do Patients Really Want? (Enhanced Medical Home Services) • What Do Payers Really Want? (Getting Paid for Population Health and Reducing Costs) • Care Coordination: New Codes, New Payment?

•C ase Studies in Innovation (Best Practices from Your Colleagues)

For more information and to register, visit www.ChildrensNational.org/BOP14.

Not a CNHN member practice? Join for free by contacting Donnita Pickett at 202-476-2727.

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