How Rady Children's helped this skater boy overcome aerodigestive issues
How Rady Children’s helped this skater
boy overcome aerodigestive issues
PLUS A MURRIETA GIRL FIGHTS FOR HER LIFE—AND WINS HOW PLAY CAN HELP HEAL DIVERSITY AND INCLUSION IN PEDIATRICS and more!
A PUBLICATION BY
THANKS TO OUR CARING NETWORK!
Hope, Help and Healing
t Rady Children’s Hospital, we are continuously striving to push the boundaries of pediatric medicine, embrace innovation and improve outcomes for every child who depends on us. The ongoing support of our dedicated donor community and volunteers is crucial in helping us fulfill this vision and create a brighter future for our young patients.
@radyauxiliary Past and present presidents of the Rady
Children’s Hospital Auxiliary recently got together for a tea party to celebrate the 70th anniversary of the Auxiliary.
Giving back, either through a donation or volunteering your time, to Rady Children’s is a remarkable way to get involved in our community. Each interaction we have with a child or family member can make a lasting impression, leaving them with a renewed sense of hope and reminding them that they are not alone in their journey. By lending our time, talents or treasure, we can help create a nurturing and compassionate environment that fosters healing, growth and resilience. In this issue, you will not only learn about the innovative care we deliver right here at Rady Children’s, but also read an inspiring story about our volunteer of 30 years, Don Bellows. “Grandpa Don” has volunteered 15,000 hours of his time at the Bernardy Center at Rady Children’s. His dedication and selflessness exemplify the impact that volunteers can have on the lives of our young patients and their families. As we continue to face new challenges and uncertainties, the role of donors and volunteers becomes even more vital. Your dedication and commitment to Rady Children’s help bridge gaps in care, complement the efforts of our exceptional medical team and ensure that each child receives the highest standard of support and care. Please join me in thanking our dedicated donors and volunteers, and if you have ever considered supporting Rady Children’s through volunteering or donation, I encourage you to take that step and join us in this incredibly fulfilling journey. Your contribution, no matter how big or small, will have a lasting impact on the lives of children and families who need it the most. Thank you once again for your unwavering support and for being an essential part of the Rady Children’s family. Let us continue to spread love, hope and compassion as we work together to make a difference.
@radychildrens These two cuties got a great start in life thanks to a partnership between Rady Children’s and Scripps Health. Read more about the partnership on page 26.
STEPHEN JENNINGS Chief External Affairs Officer and Senior Vice President Rady Children’s Executive Director Rady Children’s Hospital Foundation
@radychildrens Rady Children’s patients had a ball when players from the San Diego Wave FC stopped by for a visit.
SUMMER 2023 HEALTHY KIDS MAGAZINE 1
3020 Children’s Way San Diego, CA 92123 858-576-1700 RCHSD.org
Stephen Jennings Chief External Affairs Officer and Senior Vice President, Rady Children’s Hospital and Executive Director, Rady Children’s Hospital Foundation
Rady Children’s Hospital Auxiliary has been supporting Rady Children’s since 1953 - one full year before the Hospital opened its doors. Today, nearly 1,100 members across 19 units actively advocate for the health and well-being of children, increasing community awareness of Rady Children’s and fundraising. JOIN THE RADY CHILDREN’S HOSPITAL AUXILIARY
President and Chief Executive Officer Patrick Frias, MD President and CEO, Rady Children’s Institute for Genomic Medicine Stephen Kingsmore, MD, DSc Senior Vice President and Chief Operating Officer Chief Medical Officer Gail Knight, MD, MMM Physician-in-Chief and Chief Scientific Officer Gabriel G. Haddad, MD Senior Vice President and Chief Financial Officer James Uli Senior Vice President and Chief Administrative Officer Jill Strickland Nicholas Holmes, MD, MBA Senior Vice President and Senior Vice President, Care Redesign and Managed Care and Chief Operating Officer, Rady Children’s Specialists of San Diego Charles B. Davis, MD Senior Vice President, Executive Director, Rady Children’s Specialists of San Diego and President, Children’s Specialists of San Diego Robin H. Steinhorn, MD
Vice President of Patient Services and Chief Nursing Officer Mary Fagan, PhD, RN, NEA-BC Vice President, Strategic Marketing Irena Boostani Vice President, Government Affairs Clara Evans Vice President, Foundation Fundraising Jean Ford Keane Chair, Rady Children’s Hospital and Health Center Board of Trustees Paul J. Hering, CPCU Chair, Rady Children’s Hospital Foundation
Board of Trustees Douglas M. Arthur Chair, Rady Children’s Institute for Genomic Medicine David F. Hale
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MEMBERS 1,000 +
Rady Children’s Hospital-San Diego is the largest children’s hospital on the West Coast and one of the nation’s top pediatric health care systems. Consistently ranked in all 10 pediatric specialties by U.S. News and World Report , Rady Children’s includes a 511-bed pediatric hospital that serves as the largest provider of comprehensive pediatric medical services in San Diego, southern Riverside and Imperial counties. With more than 40 locations, Rady Children’s is the only health system in the San Diego area dedicated exclusively to pediatric health care and is the region’s only designated pediatric trauma center. Rady Children’s is a nonprofit organization that relies on donations to support its mission. For more information, visit www.rchsd.org. Healthy Kids magazine includes third-party content, advertising and/or website hyperlinks from outside businesses and organizations. Their placement in this publication is not an endorsement for these businesses or organizations or their products, materials, services or resources, nor does it reflect the views/policies of Rady Children’s Hospital-San Diego. Healthy Kids magazine and its affiliates shall not be liable to any party as a result of any information, services or resources made available through this publication. Rady Children’s complies with applicable state and federal civil rights and nondiscrimination laws. See www.rchsd. org/nondiscrimination for more information. Language assistance services are available to patients and visitors free of charge. Call 858-966-4096 / TDD: 858-627-3002 for more information.
Learn more about joining the Auxiliary or how to get involved:
HEALTHY HABITS Summer safety tips, diversity, equity and
inclusion in pediatrics, how local teens are making an impact in pediatric health care and more
SUPER SAGE After a harrowing health journey that included heart and airway surgeries before his first birthday, 5-year-old Sage Blake won’t let anything slow him down
WHEN MEDICINE IS A MYSTERY Mina Longo, the first
patient in Rady Children’s pediatric Aerodigestive and Airway Surgery Program, now raises money to help other kids with complex conditions
INSIDE RADY CHILDREN’S
PARTNERS IN CARE Rady Children’s and Scripps Health work together to
make sure that premature and critically ill newborns get top- quality NICU care
A 30-YEAR VOLUNTEER Don Bellows has been volunteering at Rady
Children’s for three decades
PAY IT FORWARD More microbiome research is possible, thanks to the
generosity of donors
Your investment in future generations will see us through unimaginable discoveries, cures, vaccines and prevention. Join our efforts and name Rady your IRA or other retirement account. It is simple, tax smart and makes a lasting impact on childhood health.
CREATE THE FUTURE SHE DESERVES
Without having to part with your money today, you know that you are making a gift larger than you thought possible.
Download the form from your IRA provider’s website
Choose a percentage of the account you wish to gift to Rady Children’s
Sign and return the form to your administrator
To learn about additional ways to make a gift through your will, trust or estate plan, visit giftplanning.radyfoundation.org or call 858-966-5804 + THANK YOU FOR INVESTING IN RADY CHILDREN’S AND HELPING THE CHILDREN OF TOMORROW.
Surf’s Up Summer’s here and June gloom has finally given way to July awesomeness. But there’s more to summer than just sun and fun. In these pages you’ll find tips to stay safe at the pool or beach, how to keep kids’ minds engaged during summer vacation and advice on talking to your child about body image. We’ve also included some updates from around Rady Children’s. You’ll meet our first chief diversity and inclusion officer, find out what Rady Children’s does to make the Hospital more fun and learn how a specialized nursing training program leads to better care. Rady Children’s is here to help keep your child happy, healthy and safe this summer, so let’s dive in!
HEALTHY HABITS SAFETY Water Wise Top tips to stay swim safe this summer
“The best prevention is a secure barrier around a pool—that’s the only thing that can fully prevent a drown- ing,” she says. “Have a fence and make sure it’s closed. If your house is one of the four ‘barriers’ around the pool, install a sounding alarm on your door so you know when your kids are going in and out.” Lynn urges adults to designate a “water watcher” who’s in charge of supervising pool activities. “Adults need to be ready to take care of kids if something happens,” she says. “Be ready for an emergency, know CPR and only be on your phone if you need to call 911.” Lynn adds that baby pools, while seemingly innocuous, can also be a source for drowning. “When not in use, dump them,” she adds. “If there’s a water source, there’s no doubt a kid will find it! Keep all water sources under control.” Finally, she says, if an emergency occurs, get the child out of the water as quickly as possible, lay them on their back, give two rescue breaths and start CPR while waiting for emergency responders. “Often people are learning hands- only CPR, but that won’t help in a drowning situation,” she emphasizes. “You must give two rescue breaths to get air in the lungs.” A Day at the Beach What home pools lack—a lifeguard— is one of the biggest benefits of a day at the beach. Take advantage of their knowledge, Lynn says. “When it comes to beach safety, the most important thing is checking with the lifeguard about the ocean conditions—that’s what they’re there for,” she says. “I will always ask, how’s the water? Are there riptides? And they’ll point to the safest places to swim. Listen to them.”
s the weather heats up, there’s nothing more refreshing than a dip in a cool pool. There are also few things quite as dangerous for small children as a pool left unattended by a vigilant adult. Sadly, drowning is a leading
According to the Red Cross, being water competent means being able to do the following
cause of death in children under age 5. Additionally, near-drowning events can lead to life-long health complications due to being submerged underwater for an extended period. “Kids are most likely to experience a drowning incident between the ages of 1 and 4—it is the leading cause of death in kids this age across the world, because at this age, kids cannot right themselves up in the water,” explains Lorrie Lynn, manager, Injury Prevention Programs, Center for Healthier Communities at Rady Children’s. “It is for these reasons that we encourage parents to make sure they and their children are water competent.” Pool Time Lynn, who is also the coordinator of Safe Kids San Diego and a program coordinator for Injury Free Coalition for Kids, says that despite San Diego being near the ocean, pools are the main area of concern for children. And when it comes to pools, the best way to reduce the risk of drowning is to limit access to the pool.
five steps: 1. Enter water
that’s over your head, then return to the surface. 2. Float or tread water for at least one minute. 3. Turn over and turn around in the water. 4. Swim at least 25 yards. 5. Exit the water.
Stay hydrated— despite being in water, the body needs to rehydrate Apply—and reapply—sunscreen Wear a hat to protect your face Wear sunglasses to protect your eyes Outfit small children in Coast Guard-approved life vests SUMMER SAFETY SNIPPETS
6 HEALTHY KIDS MAGAZINE SUMMER 2023
Summer Smarts There’s much more to summer learning than just academics. Get creative to prevent learning loss. LEARNING
SUMMER VACATION IS FINALLY HERE and it’s time for kids to let loose. But who’s to say children can’t build up their brain power while they’re having fun. Keeping your child’s brain engaged can help prevent learning loss, aka, the summer slide. Not everyone can afford a fancy summer camp or a private tutor and some parents may not be able to take time off work to focus on academics. It may seem unfair to families who choose not to focus on school as their children may feel behind. However, there are more ways to learn than you might think. “There’s such pressure on kids,” says Willough Jenkins, MD, a child and adolescent psychiatrist at Rady Children’s and inpatient medical director of the Hospital’s Child Adolescent Psychiatry Services. “Some families are very academically focused during the summer and they’re raising the bar so high that it’s almost unfair. But academics is only one piece of a child’s development.” Meaningful learning opportunities can come in many forms, she says. Experiences like travel or simply trying out something new can be valuable to a child’s overall development. The skills
that children learn during the school year remain important, but many can be translated into summer vacation-friendly versions. Sign your child up to read to shelter pets or have them read the menu aloud next time you go out to eat. Search the internet for age-appropriate STEM activities your child can do at home, or practice numbers during a trip to the grocery store. Also, involving kids in your day-to-day activities, like cooking, cleaning and even working can be educational—and it keeps them away from those pesky screens. “Find small ways to keep some of the skills going,” says Dr. Jenkins. “Most children don’t enjoy doing worksheets, so finding a way to make it more natural and fun is fantastic.” Dr. Jenkins advises parents not to stress too much about traditional academics during the summer because most children are able to regain any lost skills once school starts. However, learning loss may be more pronounced if your child was already falling behind before summer vacation or has a learning disability and it may take more time and effort to catch up.
FUN EDUCATIONAL ACTIVITIES THAT WON’T BREAK THE BANK
Get outside. Spending time in nature is rife with educational opportunities. Try a guided nature walk where your child can learn about native flora and fauna. It’s also a great way to get your child moving. Start a business. A lemonade stand is a classic for a reason. It’s a great way for kids to sharpen their entrepreneurial skills, interact with people in their community and supplement their allowance. Give back. Philanthropy is an attribute that will benefit both your child and the community. Thinking about the greater good instills a sense of responsibility and helps kids develop empathy and social skills. Find a cause that’s important to your child and find out how to donate or volunteer.
Read to win. The San Diego Library has a summer reading program that offers participants rewards for logging the books they read. The library has other great programs, too. Check out Library NExT, a series of STEAM workshops at various branches that cover everything from Python programming to the science of Harry Potter. Join a club. Youth organizations, such as the Girl and Boy Scouts and Junior Achievement, allow kids opportunities to learn new things and make new friends.
You don’t need an expensive summer camp or programs with a laundry list of extra equipment to keep your kids busy this summer. San Diego is full of free and low-cost fun that can boost brain power. Get cultured. Several of Balboa Park’s museums and cultural institutions offer free admission to San Diego County residents, active-duty military and their dependents on certain days, including the Fleet Science Center, the San Diego Air & Space Museum and the Comic-Con Museum. See the whole list of resident free days at balboapark.org.
SUMMER 2023 HEALTHY KIDS MAGAZINE 7
doll “patients,” to go through the motions in a fun, low-pressure setting to give kids an idea of what they can expect with their treatment. Sometimes kids get an extra special lift to their operating room, too. Thanks to the generosity of donors and law enforcement partner agencies, Rady Children’s patients are able to ride in style in remote-controlled cars. Visits from canine therapy volunteers, musicians and storytellers also help make treatments more fun. “This is shown to help reduce the physical signs of anxiety, which in turn can also help their medical treatment,” says Dr. Patel. Play can also give young patients some much-needed socialization. The playroom at Rady Children’s is a place where kids ranging from toddlers to teens can interact with other kids and families while they play with developmentally and sensory appropriate toys, games, puzzles, crafts and other fun stuff. There’s also an outdoor playground where kids can catch up and get some exercise amid sunshine and fresh air. Rady Children’s is also incorporating play into its mental health services. The Hospital has launched a new program in its psychiatric emergency room that includes therapeutic activities, like mindfulness, yoga and games that not only decrease stress and anxiety, but also teach important topics such as nutrition and social media. “It really helps kids who are coming to the emergency room for a mental health crisis to reduce their anxiety and incorporate play in a very therapeutic way,” says Dr. Patel. To support play therapy at Rady Children’s, please visit radyfoundation.org. Play allows kids to be creative and use their imagination, but also BUILDS ON A LOT OF SKILLS . – EKTA PATEL, MD, A CHILD AND ADOLESCENT PSYCHIATRIST AT RADY CHILDREN’S ‘‘
The Power of Play
Rady Children’s uses play to make hospital stays more fun
IT’S NO SECRET THAT PLAYING IS FUN, but for kids, play also serves a greater purpose. Play is important for a child’s development and has physical and emotional benefits. Play is how children make sense of the world around them and how they communicate with each other and with adults. “Play is quite universal,” says Ekta Patel, MD, a child and adolescent psychiatrist at Rady Children’s. “Children, as we know, are very different, but all kids can play, and that play brings joy to them. Play allows kids to be creative and use their imagination. It allows them to learn various skills while building on physical, social, cognitive and emotional strength and development.” Play can also help kids work through anxiety and gain the confidence needed to conquer their fears. At Rady Children’s, play is an important part of a child’s treatment. A hospital stay, no matter the length, can be stressful and kids can feel like they’re not in control, says Dr. Patel. Incorporating play into their time at Rady Children’s brings a sense of normalcy and helps kids adapt to the Hospital environment. Doctors, nurses and child-life specialists are well versed in different types of play, including play therapy, a powerful tool that can help kids—especially those with a history of trauma or mental health struggles—communicate fears and anxieties that they’re unable to verbalize. Hospital staff also focuses on developmentally supportive play, which can help longer-term patients continue to build on the skills they learned prior to hospitalization. Play can also help ease little minds before a big surgery or procedure. Child-life specialists will use toys and tools, such as stethoscopes, IV bags, bandages and
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ealth equity is a hot topic in medicine. The more sensitive providers are to differences in patient populations, the better care they can provide. Hospitals and health care systems around the country are working HOT TOPIC Diversity and Inclusion in Pediatrics Rady Children’s first chief diversity and inclusion officer on why making a difference matters H NANCY MALDONADO education is customized based on each division’s unique challenges. “We develop these learning and team development series where we’re going in and really speaking to things that they’re seeing and experiencing,” she says. “We know that one training’s not going to move the needle, so it’s an ongoing conversation where we are
to be inclusive, eliminate bias and reverse health disparities. Leading the charge at Rady Children’s is Nancy Maldonado, the Hospital’s first chief diversity and inclusion officer. Since her hire in November, she’s been busy embedding diversity, equity and inclusion into the DNA of the organization, defining what that looks like regarding day-to-day operations and laying the foundation for future growth. “What we want here at Rady Children’s is to provide the best care to every patient that comes through these doors,” she says. “We know that having a diverse workforce is going to help improve every patient’s experience and ultimately improve health outcomes. What we can also do is educate and empower our teams so that they are more culturally competent.” Boosting inclusivity and representation can play a role in health outcomes and is critical to ensuring that the hospital is providing equitable care. This is important to instill in staff from day one, Maldonado says. There’s no one-size-fits-all approach. All new hires undergo unconscious bias training, but beyond that, training and
looking at case studies, role-playing and looking at real situations and how can we do it differently, and looking at the little things that are done every day and starting to look at them from an equity lens.” Though many people don’t look forward to mandatory diversity, equity and inclusion training sessions, so far, the reception has been overwhelmingly positive and employees appreciate the raw and honest dialog among colleagues. Maldonado and her team are also overhauling annual training protocols to promote better engagement. She has hit the ground running and is making great strides in fostering a sense of inclusion. “If we want to provide the best care, we have to take care of the people who take care of the people,” she says. “We have to start with our own workforce because if they’re not happy here, if they don’t love to come to work, that’s going to reflect in the care they provide.”
Youth advisory group iCAN brings a unique perspective to pediatric health care COMMUNITY Advocacy and Voice
TEENS IN SAN DIEGO AND AROUND THE WORLD are making their voices heard on important topics such as pediatric health care, clinical research and innovation. They’re part of a worldwide consortium of advisory groups called International Children’s Advisory Network, Inc. (iCAN), which was created to foster understanding within the research community about the pediatric health care experience. iCAN evolved from a youth advisory group for pediatric research formed by the National Institutes for Health Research in 2006. Now, there are around 35 chapters worldwide, including one at Rady Children’s with more than 30 members. “iCAN gives teens an opportunity to explore different avenues of the health
MEET iCAN’S LOCAL YOUTH LEADERS
Lindsay Carstairs, iCAN vice president and chapter cofounder
Hannah Eghtedari, iCAN president and chapter cofounder
Lindsay is a former Rady Children’s patient who got involved with iCAN to help other kids. She has a passion for advocacy and through iCAN gives a voice to other teens as well as helps the hospital that helped her. What has been your favorite memory from being a part of this organization? We have had so much fun at in-person events and doing community service to help Rady Children’s. One experience that has been most meaningful to me was spending time with children who have diabetes
at a recent health fair. Supporting these children and learning to understand and empathize with what they are experiencing was an incredible experience. I can’t wait to do more and be able to help other kids and teens. What surprised you most about being a part of this organization? When four of us started this chapter online over a year ago, we hoped we could grow it into something more. I never imagined we would end up with so many kids interested in becoming a part of iCAN!
Hannah was recruited by long-time friend Lindsay to start the chapter. She wanted to be more involved in teens’ hospital experiences and to give back to an establishment that had done so much for her. What has been your favorite memory from being a part of this organization? My favorite memory would be our summit planning meeting, which was the chapter’s first large in-person event and really solidified the idea that we would be hosting the summit this summer. It was our first chapter-wide, in-person event and really
began the process of bonding as a team. What has this experience taught you? This experience has taught me to use my voice. Upon joining, I learned to take initiative when creating a patient newsletter and gained better collaboration and communication skills as a result. Hearing patient feedback through Hospital team members has shown me how powerful my input and voice are, how they are valued and can spark change, inspiring me to use them more.
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Helping New Nurses Find Their Place Rady Children’s nursing bootcamp lets new pediatric nurses hone their skills and build community S tarting a new job can be tough, especially fresh out of school or after a career change. At Rady Children’s, nurses who are new to the profession, or just new to pediatrics, undergo an intensive, year-long training program, which helps them acclimate to the hospital environment, explore specialties or areas or interest and build camaraderie with other staff members. Rady Children’s is committed to excellence in nursing and has been honored with the American Nurses Credentialing Center’s prestigious Magnet recognition for professionalism, teamwork and superiority in patient care. The nursing “bootcamp,” officially called the New Graduate Transition to Practice Program, is an extension of this and incorporates classroom, virtual and hands-on learning, one-on-one sessions with a preceptor and talks on resilience and wellness in the role. Sessions are held three times a year for cohorts of up to 50 nurses at a time. “One of the key taglines is ‘Growing our own,’” says Kathleen Sweeney, PhD, Associate Chief Nursing Officer-Innovation. “We want to grow them from the Rady Children’s mindset and from the pediatric nursing lens and that’s what these programs allow us to do.” Though Rady Children’s has roughly 2,000 nurses on staff, more are needed to fill gaps across the Hospital’s 12 specialty areas. Robust education programs, such as the Transition to Practice Program, can help with recruitment and retention by giving new nurses the opportunity to build their confidence and skills in a supportive environment. Since the program was reinstated post- pandemic, 96 new nurses have participated. As of April, 91 are still with Rady Children’s. Sweeney says participants love the program because it’s so targeted, focused and hands-on. Learning in cohorts and breaking
care industry through advocacy, community service and networking,” says Mariam Hmoud, iCAN Kids-Rady chapter leader. “We pride ourselves on giving our teen members agency in the activities they choose to focus on. This advisory group sets up youth to identify potential career paths in health care and grants them opportunities to build communication, collaboration and leadership skills.” The kids of iCAN lend a unique perspective to pediatric health care and act as the voice for youth before government bodies, industry officials, research institutes, nonprofit organizations and others. Many have been patients at a children’s hospital, have extensive experience with medical processes and are interested in affecting change in the health care field. Others have an interest in health care as a future career. Through iCAN, they can learn about new device development, share their stories with industry professionals and connect with other members. They conduct their own research, innovate new solutions and advocate for pediatric patients.
out into substantially smaller groups for more specialized training also build a sense of community. And the guidance from highly experienced educators with decades of experience and a passion for the profession shows new nurses what’s possible with time and training. “We have built a pool of educators who bring such real-life experience. We have people who have been nurses for 30 years here who still want to teach our new people, which is so exciting,” she says. Sweeney says one of her favorite parts of the job is meeting with new grads and seeing their excitement to be beginning their career at Rady Children’s. “It’s so rewarding to me to see these young new nurses coming into the profession. I love meeting with them and seeing their growth— and as a someone who loves my profession and loves pediatric nursing, that just is so amazing,” she says. “I’m so proud of our organization and our educators. Ultimately the goal is to provide amazing care for our patients and families, and that’s why we do this.”
The iCAN experience also empowers participants through leadership and advocacy. They learn to think on a “greater good” scale and be part of something bigger than themselves. They consider medical conditions and their associated challenges, collaborate with others, participate in and volunteer at community events and attend an annual iCAN global summit, held this year in San Diego. “iCAN is an incredible organization that gives wonderful opportunities to children worldwide,” says Erin Madera, iCAN Kids-Rady chapter leader. “Being a part of iCAN and having the opportunity to reach the youth of our community and give them a platform to really have their voices heard and valued both locally and internationally is so remarkable to witness!”
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Thin Isn’t “In” rom “What I Ate Today” videos to ads for weight loss injections to rail-thin celebrities on red carpets, teens and tweens are Tips for talking to your child about body image and eating disorders
at yourself, but if you’re in a family and you have kids, they’re watching what you’re doing and they’re picking up on that sort of talk and it becomes part of their nature as they get older.” Also, get a conversation started about health in general. Ask your child how they feel physically and what their energy level is like on a day-to-day basis. And watch out for signs that your child’s focus on looks is getting obsessive, though this may not always be easy to spot. The most obvious sign that a child’s body image is treading into dangerous waters is weight loss, though sometimes it can be hidden with baggy or layered clothing. Fatigue, irritability and spending less time with loved ones are also indicators that something’s amiss. However, this can be tough to distinguish from run-of-the-mill teenage moodiness. But behaviors that are out of character could be signs of a developing eating disorder. Also, watch out for new behaviors revolving around food, says Dr. Rhee. Is your child not eating with you anymore? Are they always going to the bathroom after they eat, or are they playing with food without actually eating much? A sudden interest in cooking and food may also be a red flag if they’re making excuses like, “I ate while I was cooking” or “I’m already full.” “It becomes an obsession,” says Dr. Rhee. “It’s hard to get these kids to recognize that you can be healthy at any size. It really depends on more than just what you look like on the outside. It’s what’s happening on the inside. And that’s harder to figure out.”
constantly exposed to messaging that imply thinness is a desirable—and attainable—
goal. The disconnect between the “ideal” look and reality can affect a child’s body image and self-esteem and may even lead to an eating disorder down the road. But there are things parents can do to nip this behavior in the bud and reframe the conversation, says Kyung “Kay” Rhee, MD, the medical director of Rady Children’s Medical Behavioral Unit, which treats children and teens with eating disorders, and interim chief of the division of adolescent and young adult medicine. “Kids are so impressionable, and it takes a conscious effort for parents to counteract those messages,” says Dr. Rhee. “Just because you’re skinny doesn’t mean you’re healthy.” Dr. Rhee recommends focusing behavior that doesn’t have to do with appearance. Highlight achievements like putting more effort into homework, keeping a clean room without being asked, helping out with a younger sibling or simply being a good person. Parents should hold themselves to the same standard, too and be mindful of diet and weight loss talk. “When parents are talking about themselves, they don’t always realize how much modeling is happening,” she says. “If you’re always self-deprecating and saying things like, ‘I look terrible today,’ or ‘I need to lose five pounds before the weekend,’ you may think it’s directed
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Eating Right from an Early Age Center for Healthy Eating and Activity Research teaches lifestyle lessons for healthy living
KICK’N CHICKEN PITAS
Serves: 4 This light and healthy lunch packs a powerful protein punch.
WHEN IT COMES TO SETTING UP CHILDREN for nutritional success, it’s never too early to start introducing healthy foods into their diet. The best way to do this is to role model food and fitness behaviors from a young age. That’s the focus of the Center for Healthy Eating and Activity Research (CHEAR), a joint program between Rady Children’s and UC San Diego, “dedicated to developing and providing
make it kid-friendly, incorporating games and other fun elements,” she continues. “The kids really enjoy being in a group with other kids that are like them. It’s a place where they don’t feel the stigma of having obesity and they don’t have to worry about people teasing them. They don’t want to focus on their weight. They want to see other kids dealing with the same thing and having fun.” While Dr. Rhee says CHEAR’s
n 2 cups shredded romaine lettuce n 1 cup seedless grapes, halved n 1 cup cooked chicken breast, chopped or shredded n 1/3 cup crispy chow mein noodles n 1/3 cup shredded carrots n 2 tablespoons sliced green onions n 4 tablespoons light Asian salad dressing n 2 whole wheat pita pockets, halved INSTRUCTIONS 1. Combine romaine lettuce, grapes, chicken, chow mein noodles, carrots and green onions in a medium bowl. Mix well with a large spoon. 2. Add dressing. Mix until ingredients are coated. 3. Spoon about 1 cup of mixture into each pita pocket half. Serve.
evidence-based treatments for San Diego families who struggle with weight and eating, including binge eating, overeating, and obesity.” Offering free and low-cost clinical studies in La Jolla and San Marcos, CHEAR enrolls children ages 8 through 12 and a caregiver in 20-week sessions to encourage lifestyle changes that will lead to healthy, long-term outcomes. The success of the program comes from the dual focus on children and their parents, explains Kyung “Kay” Rhee, MD, medical director of the Medical Behavioral Unit at Rady Children’s and interim chief
focus is not on weight loss, that’s often an outcome of teaching healthy eating and active living. “We try not to put too much pressure on the weight- loss component,” she says. “Even though a lot of the kids are in the 90th percentile or above for BMI, the most recent American Academy of Pediatrics guidelines don’t provide a specific weight loss recommendation because kids are still growing. Instead, what we say is that it’s not as much about weight loss as it is about developing healthy lifestyles and healthy behaviors now.”
We frame the program around the fact that if they can maintain weight and not gain. THAT’S A WIN. –KYUNG “KAY” RHEE, MD ‘‘
Starting healthy habits early means kids are more likely to continue those behaviors into adulthood, Dr. Rhee notes. “We frame the program around the fact that if they can maintain weight and not gain,” she says. “That’s a win.” CHEAR is implementing innovative ways to grow the program and make it more accessible to people who need it. This includes lowering the introductory age to 5—to get kids’ taste buds used to healthy foods earlier—and tailoring sessions to the cultural needs of San Diego’s diverse communities. “We are at a point now where we want to get this education out to as many people as possible in a way that can make the greatest impact,” Dr. Rhee says. For more information, visit chear.ucsd.edu .
of the division of adolescent and young adult medicine. Dr. Rhee is also a professor of clinical pediatrics at UC San Diego School of Medicine and CHEAR’s medical director. Parents and kids attend sessions together but are separated into their respective groups for tailored learning. “With the parents, we talk about behavior strategies to get kids to eat healthier and try new foods, as well as use these behavior strategies to change their environment, decrease temptations and change their home in a way that doesn’t promote constant eating,” Rhee says. “We also teach ways to get the whole family to be more active: not having so much screen time, getting out of the house and doing non-sedentary activities in daily living, like taking the stairs instead of the elevator.” The goals are the same with kids, but the methods are different. “We teach the kids the same things, but we
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14 HEALTHY KIDS MAGAZINE SUMMER 2023
BY CHRISTINA ORLOVSKY SAGE When 5-year-old Sage Blake walked into his first day of transitional kindergarten last fall, his mother Kimberly was there alongside other teary-eyed parents wav- ing goodbye to their kids as they em - From surgery to skateboarding, Sage Blake won’t let anything slow him down
barked on a new chapter. However, unlike a lot of the other moms who were sad to see their babies growing up, Kimberly was crying tears of joy, watching her big boy walk bravely into the classroom for the first time. “For a long time, we didn’t think Sage would ever be able to go to school”, Kim - berly recalls. “In the past five years, there have been so many milestones I never thought we would get to see.” When Kimberly was five-and-a-half months pregnant, she learned her baby had a double aortic arch, a congenital heart defect that results in a second artery that extends from the heart and wraps around the trachea and esophagus. This can lead to difficulty breathing and swallowing. Kimberly, who already had a high-risk pregnancy due to her own epi - lepsy, now had further complications to worry about. Three weeks before her due
SUMMER 2023 HEALTHY KIDS MAGAZINE 15
TOP: Sage in recovery after heart surgery BOTTOM: Following trachea surgery, Sage proclaims “I got this!”
16 HEALTHY KIDS MAGAZINE SUMMER 2023
date, she was put on bed rest due to elevated blood pressure. She was induced at 37 weeks, and within a few hours of labor, her baby’s
that causes the normally C-shaped cartilage that protects the windpipe to form a com- plete O. This can result in severe narrowing of the windpipe that presents a variety of breathing and feeding problems. “Sage was born with tracheal stenosis, a narrowing of his windpipe, which required major surgery,” Dr. Brigger explains. “He is the perfect example of the need for the Cen- ter for Pediatric Aerodigestive Disorders and Airway Surgery. We could fix the pipes, but he needed so much more. That’s where the feeding experts came into play.” Kimberly recalls: “Right after Sage’s heart surgery, that’s when our feeding journey began.” Sage had a nasal feeding tube inserted before heart surgery.
heart was in trouble. His double aortic arch created a vascular ring around the trachea and esophagus. “We knew there was a high likeli- hood of me needing an emergency C-section, which is what ended up happening,” Kimberly says. “As soon as he was born, he cried, but then he started gargling. The respiratory team was already there, and they whisked him away. We had no idea what was going on until later that day. By the time I
"He had heart surgery
to correct the double aortic arch at just 8 days old."
got to meet him, he was already intubated and hooked up to all kinds of machines. His CT showed that his double aortic arch was really tight. His breathing was labored, and he was really struggling.” Sage spent the first week of his life in the neonatal intensive care unit (NICU) before being transferred to Rady Children’s, where he underwent surgery to correct the double aortic arch at just 8 days old. But not before he and his family met a Rady Children's doc- tor who was truly going to change Sage’s life. A LIFECHANGING MEETING After an exhausting day of hospital transfers and settling in at Rady Children's, the Blakes met the team from ENT (ear, nose and throat or otolaryngology) and Matthew Brigger, MD, chief of the Division of Otolaryngology at Rady Children’s and a professor of surgery at UC San Diego School of Medicine. He also leads the Center for Pediatric Aerodigestive Disorders and Airway Surgery, a multidis- ciplinary team of experts that specializes in complex airway and esophageal disorders. “I had no idea at that time how critical Dr. Brigger would be to our life,” Kimberly says. Dr. Brigger collaborated with John Nigro, MD, who leads the Heart Institute at Rady Children's to use the opportunity when Sage was under anesthesia during heart surgery to look at his airway. He discovered that Sage had a complete tracheal rings, a birth defect
“He was born on April 26, 2018, and he wasn’t able to bottle feed until the end of May,” she says. “I didn’t anticipate any of that. When you have a child born with trauma, you tackle whatever is put in front of you first. We knew about the heart issues, so that’s what we dealt with first. Then after his heart surgery, we learned more about the tracheal rings and how they were affecting his breathing and feeding. After the heart surgery, he was still having so much trouble breathing, so we knew the tracheal rings were causing even more distress.”
"Then after his heart surgery,
we learned more about the tracheal ring and how it was affecting his breathing and feeding."
SAGE’S FEEDING JOURNEY For the next few months, Sage and Kimberly worked with the feeding team to learn how to do something that most of us take for granted: eat. While some of Sage’s physicians wanted him to have the nasal feeding tube for good, Dr. Brigger’s team wanted to help the Blake family feed without it. “He couldn’t nurse, so I had to pump, and I
SUMMER 2023 HEALTHY KIDS MAGAZINE 17
had to use the industrial pump at the Hospi- tal because I was overproducing milk and he wasn’t even feeding,” Kimberly explains. “He was so tiny and everything we thought we were doing right wasn’t good enough. He was born at 5 pounds, 2 ounces but was down to 4 pounds, 8 ounces because he just couldn’t eat.” Sage left the hospital in June, but still had a lot of work ahead of him. “We went to occupational therapy three or four times per week, but we continued to not make headway feeding. He was still having issues with feeding and breathing, and I was sleep- ing with my hand on his chest to make sure he didn’t stop breathing,” she says. “Thinking back on it now, I didn’t really know how bad it was until now I see him healthy.” She also didn’t realize how much other doctors were pushing for Sage to have a nasal feeding tube, while Dr. Brigger’s team was teaching the family how to feed without it.
LEFT: Sage was shredding just shy of
his third birthday
LIFE AND BREATH
Disorders and Airway Surgery at Rady Children’s comes into play. Consisting of a multidisciplinary team of health care experts from otolaryngology (ENT), pulmonary/respiratory medicine, gastroenterology, hepatology and nutrition, speech-language pathology and occupational therapy, the center specializes in the evaluation, treatment and management of complex airway
kids out there and find a way as a multidisciplinary group to provide comprehensive care that spans the breadth of their problems and to coordinate the best care possible,” explains Dr. Brigger, whose passion for airway problems was born out of his own childhood esophageal issue as well as his son’s bout with esophagitis. A nationally recognized expert in his subspeciality, Dr. Brigger was hired at Rady Children’s to create this multidisciplinary program. “The big aha moment for the need for this program was seeing that so many kids were being bounced around from specialty to specialty because they had a set of problems that could not be addressed by one subspecialty. For example, they have asthma that results from a congenital
Think about two functions you need to survive. What comes to mind? Breathing and eating likely top the list—and they’re likely things you can’t recall learning how to do. They’re functions we take for granted, like our heart beating or our eyes blinking. However, for children born with congenital birth defects or conditions that affect the airway, breathing and feeding may not come naturally. In fact, they may require surgery, education and therapy to perform properly. That’s where the Center for Pediatric Aerodigestive
and esophageal disorders. Led by Matthew Brigger, MD, chief of the Division of
Otolaryngology at Rady Children’s and a professor of surgery at UC San Diego School of Medicine, the center launched in 2017 to serve the growing needs of children with multifactorial issues that impact their breathing and eating. “Our goal is to take these kids that are the most complex
18 HEALTHY KIDS MAGAZINE SUMMER 2023
"If it wasn’t for Dr. Brigger, our OT, my husband and Sage fighting, we would have never gotten to where we are today. We were a true team."
“To be honest, we just wanted to do whatever we could to keep Sage alive,” Kimberly says. “If it wasn’t for Dr. Brigger, our occupational therapist, Anne Mazzeo, my husband and Sage fighting, we would have never gotten to where we are today. We were a true team.” While Sage was learning to feed properly, he was still awaiting surgery to repair his tracheal rings. Ideally, he would have been at least 6 months old at the time of surgery so he could be bigger and stronger, but he was
a sudden, he would stop breathing and then choke. Any way we sliced and diced it, it wasn’t working for him,” Kimberly says. At 4 months and 2 days old, Sage underwent his second major surgery, this time to repair the tracheal rings. “IT GOT WORSE BEFORE IT GOT BETTER” The period after surgery was the hardest in Sage’s journey. “This was a super traumatic time in our lives,” Kimberly says. “He was just in such critical condition for a week. For at least three or four days he was completely para- lyzed under anesthesia. He didn’t even look like my child.” Still, through all the trauma, Kimberly was grateful to have the team at Rady Children’s by her family’s side.
still having such a hard time feeding, the family knew that they had to act faster. “Around early August, we shared our con- cerns with Dr. Brigger. Sage just couldn’t gain weight, and his breathing was really labored—it sounded like a rattle, and all of
(Continued on page 20)
abnormality, or their digestion doesn’t work because of it,” he continues. “We realized there should be a more cohesive way to manage these problems. We offer the best services to kids that have these multifactorial
Children’s from as far away as Alaska and Guam. “We have been growing by leaps and bounds and expanding beyond what we ever thought was possible,” Dr. Brigger says. As the program continues to grow, Dr. Brigger is extremely proud of the success they have achieved to date and the passion with which the team tackles the toughest cases. “Our outcomes speak for themselves. We’ve been able to
with kids who were told they weren’t going to get feeding tubes taken out or who were told they wouldn’t get better,” he continues. “We have accountability as a group to hold ourselves to a higher standard. We have very lively discussions among the specialties. That healthy discourse is what parents want. As a parent, I want people to push for my children. That’s why I push for these kids.”
issues that require the in-depth knowledge of
different subspecialities. My passion is airway surgery, but if the child can’t feed or talk, they need other specialists. I can fix the plumbing, and then other experts can help with the feeding or speaking.” In the past six years, the center has treated 1,200 patients. Dr. Brigger sees infants whose defects were diagnosed in utero, and toddlers whose feeding or breathing issues have worsened as they age. Referrals come from a variety of specialties, and patients come to Rady
For more information, visit rchsd.org/programs-services/ aerodigestive-center.
meet the bar,” he says. “We are aggressive—or
progressive—in the way we look at children and what we can and cannot do for their problems. We work very closely with families that are motivated. We are working
RIGHT: Matthew Brigger, MD, chief of the Division of Otolaryngology at Rady Children’s
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