Sharing the ways you fund a mix of world-class care, advocacy, research & education every day.
Donor Impact Summary
Our donors help us re-imagine how we care for kids
in uncompensated care
Share your story! Details on page 7.
hank you for your generosity that allows us to bring the best techniques, ideas, and abilities to every child that enters our doors. Our Board of Directors and staff consider you one of our key partners. Your leadership support in 2011 made a difference in many lives of our patients and families. For instance, you helped Lauren to foster Safra get critical treatment for a Dr. Newman’s philosophy: innovation painful, chronic, growth-impeding connections and encourage . issue (more on page 6). Lauren is to improve children’s health now doing great! Like Lauren, children and families in the DC region, across the country, and throughout the world come to us for help for chronic conditions, emergency traumas, rare diseases, birth defects and more. Our new President and Chief Executive Officer, Kurt Newman, MD, is challenging all of us at Children’s National to work better, think bigger and differently, and make creative connections to re-imagine how we care for kids. We encourage you to visit us and feel the new energy in the air. There is so much more to do, and together we will improve the lives of children everywhere. Inside you’ll learn about some of our efforts in research (“white matter” page 5); advocacy (page 4); child life (“music therapy” page 3); education (DC schools page 8); and care (new cardiac unit page 2).
The Sound of Therapy
The Cardiac ICU features private patient rooms designed with input from Children’s National Heart Institute families and Cardiac ICU staff.
Music transforms patient treatment
New Cardiac Intensive Care Unit Opens Patient care transformed through design and technology innovation
hildren’s National has one of the highest success rates for cardiac surgery in the country and many are performed in the first few days of a newborn’s life. Because of the critical nature of this care, Children’s reimagined how we care for patients. A new Cardiac Intensive Care Unit (Cardiac ICU) with 26 private rooms opened its doors in December. The family-centered layout is designed to bring cutting-edge treatment to our patients’ bedside and ensure the best possible outcome. Within days after its opening, eighteen patients with severe cardiac disease were safely transferred to the unit for care. “Having a child in the Cardiac ICU is a stressful time for families, but our new unit allows them to be in a comfortable and safe environment, while also providing our clinicians with access to the latest technology and research,” said John Berger, MD, Medical Director of the Cardiac ICU. A vital part of Children’s National Heart Institute, the Cardiac ICU provides superior care for children recovering from heart 2
surgery and patients with heart conditions and children with heart disease undergoing non-cardiac surgery.
Our new state-of-the-art Cardiac ICU uses rapid deployment of Extracorporeal Membrane Oxygenation (ECMO) and Near Infrared Spectroscopy (NIRS) to ensure each child receives the most advanced treatment available for young cardiac patients. Children’s National is home to the region’s only Cardiac Intensive Care Unit dedicated to neonates, infants, children, and adults with acquired and congenital heart disease. The comprehensive approach we take has already resulted in shorter average lengths of stay for patients whose families are anxious to have them home.
The new Cardiac ICU features: • In-room display of electronic medical records • Research-based monitoring of vital organs, including the brain to preserve neurological function and optimize long-term outcomes for patients • Technology that provides real-time updates of personalized medical record data, allowing providers to focus on care at the bedside • Extra large rooms designed to accommodate long-term patients, such as those needing transplants • Hallways that accommodate two passing beds • Showers, washers and dryers, lactation rooms, and rest area for families • Dual handset translator phones
ow does Children’s National think bigger and differently about patient care? One way is through music therapy, the clinical and evidence-based use of music to improve a child’s health and well-being. Made possible by gifts from Rock Against Cancer and the Gabrielle’s Angel Foundation, our first-ever music therapist joined our team in 2011. Patients are involved in songwriting, instrumental play, singing, music and movement, music and play, music-assisted imagery and relaxation, and music listening. Even hearing a simple drumbeat can lower a patient’s heart rate in a moment of anxiety and make treatment more effective. Sessions occur where patients need it most, which may be bedside, in the unit’s procedure room, or in outpatient infusion suites.
Work and play come together! Instruments like this guitar are one of many tools our music therapists use with patients.
“A number of studies have shown [that] if we can boost the mood of a patient, the outcome will be better.” —Dr. Jeffrey Dome, Division Chief, Oncology
Breakthrough in Congenital Heart Disease Screening
A monumental milestone in early detection has national impact
DID YOU KNOW...
Between 100 and 200 infants die each year in the U.S. due to unrecognized heart disease. Prenatal ultrasounds only detect 25 percent of congenital heart defects. Due to naturally occurring fetal pathways, babies often do not develop symptoms until after the second day of life when they have already been discharged. Our international partners in Kuwait, Abu Dhabi, and Qatar have implemented pulse oximetry screening in their hospitals.
Research at Children’s National signals the importance of this crucial brain tissue
ongenital heart disease (CHD) is the most common birth defect, affecting approximately 8 of every 1,000 babies born. Early detection is critical to saving the lives of affected infants. At Children’s National, we envision a future where all infants with CHD are diagnosed before leaving the newborn nursery. With the generous support of the Dekelboum Family Foundation, Children’s Congenital Heart Disease Screening Program is making this vision a reality. The program tests babies for heart defects within hours of being born. It is a painless and inexpensive test to detect low oxygen levels that may not be detected by the human eye. New Jersey looked to Children’s National’s expertise and toolkit to implement the mandatory screening recommendations. The impact of this milestone was immediate. A New Jersey newborn was found to have CHD as a result of the new testing in the debut month. Then in September, U.S. Secretary of Health and Human Services Kathleen Sebelius endorsed nationwide screening. What started at Children’s National soon became a national standard.
The Power of White Matter
“the goal is to prevent or treat neurological and behavioral disorders in childhood by understanding the development of the central nervous system…”
hite matter is brain tissue that carries information between the nerve cells in the brain and spinal cord, and the connectivity of neurons from one part of the brain to another. Comprising about 50 percent of the human brain, white matter is responsible for motor coordination, and cognitive and social development. Premature babies face a range of potential neurological disruptions, and those born more than four months early are at a critical time for brain development.
Our tool kit is being used to guide implementation at hospitals locally, regionally, nationally, and internationally.
Our research Vittorio Gallo, PhD, director of Children’s Center for Neuroscience Research and Ruth Pack Wolf and William B. Wolf Sr. Professor in Neuroscience, studies new molecular strategies that will promote white matter development, oligodendrocyte (a type of brain cell) maturation, and myelination (the growth and repair of white matter). His goal is to prevent or treat neurological and behavioral disorders in childhood by understanding the development of the central nervous system, including the cellular and molecular mechanisms of brain dysfunction. In collaboration with Dr. Gallo, two teams are dedicated to advancing care even further for our youngest patients suffering from neurological disruptions. Investigators from the Center for Neuroscience Research study how white matter develops and grows. A better understanding how typical white matter develops may help scientists learn how to stimulate re-growth of white matter after injury or deterioration. Investigators from the Center for Genetic Medicine Research through the White Matter Disease Program use advanced gene sequencing and protein analysis to develop new tools to diagnose and eventually treat white matter disorders.
white matter, Myelination, or growth of at around in humans begins in utero d continues five months of gestation an ars of life. throughout the first three ye Brain disorders Some of the most prevalent brain disorders that affect children and babies are Attention Deficit Hyperactivity Disorder (ADHD), epilepsy, and autism. Cerebral palsy (CP), a broad term that describes a group of neurological brain disorders affects as many as 3 in 1,000 children. CP is usually is diagnosed by 3 years of age. Babies with CP are often slow to reach developmental milestones, such as learning to roll over, sit, crawl, or walk. Investigators are also finding connections between white matter and multiple sclerosis (MS), which can cause blurred vision, loss of balance, fatigue, and numbness. Approximately 95 percent of all lesions associated with MS occur in the white matter. As many as 10,000 to 15,000 American children may have MS. 5
With her celiac disease symptoms under control, Lauren can enjoy being a kid again!
2012 DC Gluten-Free Expo Friday, June 15, 2012
Lauren’s story A victory over celiac disease
I More than 3 million Americans suffer from celiac disease. Symptoms for CD include: Diarrhea, Abdominal Pain or Cramps, Bloating, Poor Growth, Irritability
“Eating gluten free keeps getting easier and there are lots of yummy treats!” —Lauren
n February 2011, a mother finally got the answer she needed to stop the tormenting stomach pains-mystery her daughter had – it was celiac disease (CD). Seven-year-old Lauren Safra recounted her first symptoms, “I had stomach aches and I was really tired. Also, I didn’t grow a lot.” It’s a disease often minimized by many people, yet its impact on a child’s daily life cannot be underestimated. More than 3 million Americans suffer from CD; a chronic, hereditary, auto-immune disorder caused by ingesting gluten, the protein found in wheat, barley, and rye. Children’s National is leading the way in improving the way pediatric CD is diagnosed and treated for many patients like Lauren. Lauren says, “Attending birthday parties [is hard] because I usually can’t have anything that everyone else is eating.” But Lauren has discovered a world of tasty gluten-free food that she can enjoy. Her favorite treats are her mother’s gluten-free chocolate cupcakes with icing and sprinkles. Now that she’s healthy, Lauren feels great and nothing stops her from doing her three favorite activities: dancing, going on playdates, and gymnastics. Being gluten-free means being painfree for Lauren. Her advice to other kids being diagnosed with CD is simple, “Eating gluten free keeps getting easier and there are lots of yummy treats!”
Gluten-Free Brownies! 1 stick (1/2 cup) butter, melted 1 cup granulated sugar 1 teaspoon gluten-free vanilla extract 2 large eggs 1/2 cup gluten-free all-purpose flour 1/3 cup cocoa powder 1/2 teaspoon baking powder 1/2 teaspoon salt 1/2 cup chopped walnuts or pecans Preheat oven to 350 degrees F. Grease a 9-inch baking dish with non-stick spray. In the bowl of a standing mixer, cream together butter, sugar and vanilla extract. Add eggs one at a time, mixing well after each addition. In a separate mixing bowl, mix together gluten-free all-purpose flour, cocoa powder, baking powder and salt. Slowly add these dry ingredients into the wet ingredients and mix until well incorporated. Gently fold nuts into the mixture and then pour evenly into greased baking dish. Bake for 20-23 minutes until the brownies pull away from the side of the pan or a toothpick inserted into the center comes out nearly clean. Cut into squares and top with your favorite frosting if desired. Yields 1215 brownies.
For more information or to register to attend, visit: www.dcglutenfreeexpo.com This event is sponsored by the Celiac Disease Program at Children’s National Medical Center. All proceeds from the event will benefit the patients and families of this program.
Like the brownies? Find more gluten-free recipes at: www.childrensnational.org/celiac
Share Your Story! Do you have a first-hand experience with Children’s National to share with others? We’ll send you a Dr. Bear gift package for each story we receive. Select stories may be featured in future reports like this one. Visit us online at: childrensnational.org/MyStory 7
DID YOU KNOW... Children’s National School Services provides direct health care services in 121 DC public and 42 public charter schools. The school-tonurse ratio is the fourth highest in the country. The number of schools receiving full-time nursing is up from
98% in 2011
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