A Hopeful Heart - Howw Rady Children's helped young Amanda overcome a complex heart defect
SPRING 2024
How Rady Children’s helped young Amanda overcome a complex heart defect
THE PADRES GO TO BAT FOR PATIENTS MUSIC AND MENTAL HEALTH CELEBRATING NURSES and more!
A PUBLICATION BY
APRIL 14, 2024 AT THE SAN DIEGO ZOO
JO IN US EXPERIEN CE F OR A ONE-OF-A- KIND in support of Rady Children’s Patient Experience Program
START YOUR FUNDRAISER NOW
THANKS TO OUR CARING NETWORK!
Teaming Up for San Diego Kids verything we do at Rady Children’s is in support of our mission to provide the very best care to children. This means recruiting the best, investing in technology and ensuring supportive environments for any child who needs our care. None of this is possible without the incredible support of our local community and champions like you. Thanks to your generosity, our end-of-year Light the Way fundraising campaign has surpassed all expectations, raising a remarkable amount that remains right here in San Diego. But transforming pediatric health care takes more than philanthropy alone. It takes a team. E By actively engaging with the community, we can increase awareness of the critical work at Rady Children’s and cultivate partnerships that benefit the San Diego region’s economy. I am proud of our collaborations with prestigious sports teams, championships and tournaments, such as the World Lacrosse Championship with the San Diego Seals and Rady Children’s NCAA Invitational basketball tournament. Sitting on the sidelines at the Rady Children’s Invitational, the first men’s college tournament in San Diego of this caliber, I was humbled watching our patients take to the court, cheered on by fans from 32 states and four countries. I was reminded of the profound impact our Hospital has on the lives of children and families in San Diego and beyond. Collaborations such as these underscore the significant role sports and teamwork play in promoting the well-being of children and communities, spanning from physical to mental health. As we continue to pursue new opportunities with organizations across the region, we remain committed to our single purpose—to provide the best care for the children we serve, today, tomorrow and for years to come. Thank you for your unwavering support and commitment to our mission. Together, we are making a difference in the lives of so many children and their families.
@radyauxilary The Mountain View Unit of the Rady Children’s Hospital Auxiliary is gearing up for its annual Boot Scootin’ Bunco fundraiser. Find out more about this event and other fun ways to support Rady Children’s on page 13.
@teamrady Members of Team Rady worked up a sweat at a barre class in Carmel Valley. The class also raised $400 for the Hospital.
STEPHEN JENNINGS Chief External Affairs Officer and Senior Vice President Rady Children’s Executive Director Rady Children’s Hospital Foundation
@radychildrens Soccer star Alex Morgan made a special stop to inspire patients at Rady Children’s. Her Alex Morgan Foundation has partnered with the Hospital to help make a difference for San Diego kids.
SPRING 2024 HEALTHY KIDS MAGAZINE 1
Hospital Foundation 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 Vice President, Strategic Marketing Irena Boostani Senior Communications Specialist, Rady Children’s Marketing, and Editor, Healthy Kids Magazine Megan Matthew
President and Chief Executive Officer Patricio Frias, MD President and CEO, Rady Children’s Institute for Genomic Medicine Stephen Kingsmore, MD, DSc Senior Vice President and 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 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 Susan Herman, DNP, MSN, RN, NEA-BC, CENP 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 Board of Directors David F. Hale
1230 Columbia Street, Suite 800, San Diego, CA, 92101 619-230-9292 sandiegomagazine.com
Contributing Designer Analia Driscoll
Publisher and Chief Content Officer Troy Johnson Chief Executive Officer Claire Johnson Custom Content Editor Sarah Sapeda Art Director Samantha Lacy
Contributing Writer Christina Orlovsky Contributing Copy Editor Kelly Davis Contributing Photographer Jenny Siegwart
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.
SPRING 05 HEALTHY HABITS The Padres team up for kids, Rady Children’s salutes
its nurses, the costumed window washers brightening patients’ days and more 14 MENDING BROKEN HEARTS Rady Children’s provides multidisciplinary care for kids with complex cardiac issues in its cardiothoracic intensive care unit 18 HOPEFUL AT HEART Born with a congenital heart defect, 2-year-old Amanda is happy and healthy thanks to the care she received at Rady Children’s INSIDE RADY CHILDREN’S 28 LET’S CELEBRATE All about the Celebration of Champions and the patients the popular annual event benefits 32 PAY IT FORWARD The grandparents of a jiujitsu competitor who battled Kawasaki disease as a child support Kawasaki disease research at Rady Children’s
SPRING 2024 HEALTHY KIDS MAGAZINE 3
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. Your investment in future generations will see us through unimaginable discoveries, cures, vaccines and prevention. Join our efforts and name Rady 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.
Your investment future generations will s us through unimaginab discoveries, cures, vaccin and prevention. Join o efforts and name Ra Without having to part with your money today, you know that you are making a gift larger than you thought possible. Without having to part with your money today, you know that you are making a gift larger than you thought possible. your IRA or other retireme account. It is simple, t
CREATE THE FUTURE SHE DESERVES CREATE THE FUTURE SHE DESERVES
2
3
1
2
3
1
Download the form from your IRA provider’s website
Choose a percentage of the account you wish to gift to Rady Children’s Choose a percentage of the account you wish to gift to Rady Children’s
Sign and return the form to your administrator
Download the form from your IRA provider’s website
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. 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.
your IRA or other retirement account. It is simple, tax
HEALTHY HABITS
It Takes Teamwork All the great work that happens at Rady Children’s wouldn’t be possible without support from its partners. In these pages you’ll find out more about the people that help the Hospital thrive—from large organizations to volunteers trying to brighten patients’ day to the amazing employees who show up every day ready to give it their all for our community’s kids.
SPRING 2024 HEALTHY KIDS MAGAZINE 5
HEALTHY HABITS
BIG LEAGUE
Rady Children’s and the San Diego Padres team up for kids HOMETOWN HEROES
IN SAN DIEGO, FEW PARTNERSHIPS ARE MORE MEANINGFUL THAN THAT OF RADY CHILDREN’S HOSPITAL AND THE PADRES. The Major Leaguers and the only dedicated pediatric hospital in the San Diego region have been working together for more than 30 years to bring smiles to the faces of patients and families. “The Padres and Rady Children’s are coming together to stand up for kids’ health,” says Stephen Jennings, Rady Children’s Chief External Affairs Officer and Senior Vice President. “We’re very lucky to have the Padres in our community, and we’re so grateful. Giving back is ingrained in their players.” From bedside meet and greets
with players and hosting patient families in stadium suites to redesigning a lobby at Rady Children’s and raising big bucks for the Hospital, the Padres have shown time and time again how seriously they take their partnership with Rady Children’s.
FROM BEDSIDE MEET AND GREETS WITH PLAYERS AND HOSTING PATIENT FAMILIES IN STADIUM SUITES TO REDESIGNING A LOBBY AT RADY CHILDREN’S AND RAISING BIG BUCKS FOR THE HOSPITAL, THE PADRES HAVE SHOWN TIME AND TIME AGAIN HOW SERIOUSLY THEY TAKE THEIR PARTNERSHIP WITH RADY CHILDREN’S.
“We’ve been a longstanding partner of Rady Children’s
Hospital,” says Padres CEO Eric Greupner, who’s also a member the Rady Children’s Hospital Foundation Board of Trustees. “Supporting Rady Children’s and its mission to provide the very best pediatric care to the children in our region is central to the mission of the Padres and our Padres Foundation, which is to give back to our community and improve lives throughout San Diego and Baja.” The Padres also play a prominent role in the Hospital’s annual Celebration of Champions, a special event for patients of the Peckham Center for Cancer & Blood Disorders and their families (read more about Rady Children’s Celebration of
TOP: Heavy hitter Manny Machado and a Rady Children’s patient ambassador are all smiles BOTTOM: The “team” from Rady Children’s with Jenny Kim, MD, Medical Director, Sickle Cell Program at Rady Children’s and Clinical Professor of Pediatrics, UC San Diego
6 HEALTHY KIDS MAGAZINE SPRING 2024
Champions on page 28). The event includes fun activities for patients and families, an Olympic-style relay where they pass the symbolic “Torch of Life,” and a remembrance ceremony to honor kids who’ve lost their lives to cancer. “It’s always an emotional and profound day,” says Greupner. “It’s really meaningful to know that our players and the rest of us who go out there can bring a smile to a child’s face and make them feel important and make them feel celebrated for the battle that they’re going through, and hopefully encourage them to keep fighting. The days that we spend at the Celebration of Champions are some of my favorite memories.” Patients of the Peckham Center for Cancer & Blood Disorders are also invited each year to be special guests at Padres spring training in Peoria, Arizona. The experience gives around 15 teenage (16 in 2024) cancer patients the
a long, hard road for many of them in cancer treatment,” says Greupner. Jennings recalls the first spring training experience fondly. Late Padres owner Peter Seidler, who died in November, shared with the teens insights from his own cancer battle. “I remember how he talked to those kids, and it was such an uplifting conversation. Being a cancer survivor, he could really get down to what they were feeling and what they were struggling with. It was so compassionate and so thoughtful,” he says. “The Padres have bent over backwards. They do such amazing things for us.” No matter what the activity, the players get as much out of it as the patients. Padres star slugger Manny Machado is known for—amongst other things—chatting up patients much to their delight and sticking around to sign autographs. “They are honored to be able to give back and support the mission of the
IT’S A SPECIAL EXPERIENCE FOR THEM TO BE ABLE TO TRAVEL ON THEIR OWN AND GET A BIT OF A BREAK—BOTH MENTALLY AND PHYSICALLY—FROM HAVING TO DEAL WITH WHAT’S BEEN A LONG, HARD ROAD FOR MANY OF THEM IN CANCER TREATMENT.”
chance to travel, often for the first time without parents, be treated like VIPs, make new friends, tour the facilities and enjoy outings with Padres players and on-field access. The young Padres fans are also honorarily “signed” to the team. “It’s a special experience for them to be able to travel on their own and get a bit of a break—both mentally and physically—from having to deal with what’s been
Hospital, and in particular the kids who are patients at the Hospital,” says Greupner. “We get some of our highest rates of participation from players and coaches with any event at Rady’s Children’s because of the overwhelming care and concern and passion that our players and coaches have for the kids who are going through tough times and health battles and their family members who are also going through it every step of the way with their children.”
Rady Children’s patient ambassadors pose for a pic with Padres mascot, the “Swinging Friar”
SPRING 2024 HEALTHY KIDS MAGAZINE 7
HEALTHY HABITS
SUCCESS STORY the Heart Warrior jordan
Jordan was welcomed into the world following a healthy full-term pregnancy and birth. He was deemed healthy during his newborn exam and at his early pediatric visits. Around 7 weeks of age, he began breathing rapidly, sweating profusely when eating and seemed to be struggling with breathing. A pediatric visit revealed he was not gaining weight despite frequent nursing. “My instincts told me something was wrong and that he needed to be evaluated in the emergency department at Rady Children’s,” recounts mom,
diagnosis of dilated cardiomyopathy. Early discussions with Jordan’s cardiac team revolved around survival rates, heart transplant and lifelong medications,” Lauren says.
“What followed was many tests,
procedures, imaging, prolonged intubation and cocktails of medications to keep Jordan alive.” Several days later, doctors found an exceedingly rare congenital cardiac
Lauren. “We didn’t know just how sick he was or that we wouldn’t be leaving the hospital for the next month.” Within hours, the family got the devastating news that Jordan’s heart was significantly enlarged; he was in severe heart failure. “Initially we were given the
defect called Anomalous Left Coronary Artery from the Pulmonary Artery (ALCAPA). It occurs in 1 in 300,000 live births, however, the anatomy in Jordan’s coronary arteries was so unusual his defect was even less common. Lack of oxygenated blood pumping to his heart muscle caused multiple heart attacks, resulting in weakening, enlargement and severe damage to his little heart. Jordan was critically ill and even simple movements created stress on his weakened heart. Drug-induced paralysis became necessary to reduce his metabolic demands. He endured a complex open-heart surgery six days after admission to Rady Children’s and underwent a second a few days later after the initial surgery revealed further surgical intervention was needed. “His body was so weak it was unable to sustain itself,” says Lauren. “He suffered cardiac arrest twice, requiring resuscitation, defibrillation and compressions for 30
HE SUFFERED CARDIAC ARREST TWICE, REQUIRING RESUSCITATION, DEFIBRILLATION AND COMPRESSIONS FOR 30 MINUTES. ECMO LIFE SUPPORT KEPT HIM ALIVE UNTIL HE BECAME STRONGER.
8 HEALTHY KIDS MAGAZINE SPRING 2024
WHEN JORDAN WAS SO SICK, WE MADE A WISH FOR HIM TO BE ABLE TO DO ANYTHING HIS HEART DESIRES; MAYBE DRIVE
“Now, Jordan is nearly 9 months old. He is such a curious, active and happy baby. He loves his big sister, laughs and enjoys the love of the people around him. The best thing about being a mom of two is having two little ones to show the world to and have fun with, teach them new things and learn from them,” says Lauren. “When Jordan was so sick, we made a wish for him to be able to do anything his heart desires; maybe drive
minutes. ECMO life support kept him alive until he became stronger.” Fast forward a few months and Jordan’s condition has improved dramatically, although the road ahead will have challenges. He is followed closely in the heart failure clinic at Rady Children’s with regular cardiac echograms, labs and other tests. He also takes cardiac medications daily and participates in physical therapy, occupational therapy and other early intervention services. “He will always have congenital heart disease and will need to be followed by a cardiologist for the rest of his life,” Lauren says. “However, he is doing remarkably well and has not just survived but is thriving. Jordan is really a miracle, and that is thanks to the entire team in the CTICU at Rady Children’s, from the nurses and doctors to the support staff. They were fantastic, warm, caring and knowledgeable. They really treated Jordan as if he were their own. It was heartwarming to see how Jordan’s medical team went above and beyond to care for our son. I am so thankful for the team at Rady Children’s for giving Jordan a second chance at life.” And for Mother’s Day, Lauren received a special surprise from the Alex Morgan Foundation, Rady Children’s and Nike. The organizations gifted new moms an Essentials Kit that included baby onesies, blankets and a food delivery gift card to provide extra support during this difficult time. It was a heartfelt gesture that was very much appreciated.
GO-KARTS AND PLAY SOCCER. WHATEVER HE DECIDES TO DO, I WILL ALWAYS BE SO PROUD OF JORDAN
go-karts and play soccer. Whatever he decides to do, I will always be so proud of Jordan and am humbled that I get to be his mom,” she continues. “Jordan is a heart warrior, a life warrior and a true champion. Mother’s Day this year had even more meaning for me as it gave me a deeper appreciation for the gift of life.”
SPRING 2024 HEALTHY KIDS MAGAZINE 9
HEALTHY HABITS
May 6-12 is National Nurses Week TEAM RADY Celebrating Nurses
N URSES ARE THE HEART—AND OFTEN THE EYES, EARS AND HANDS—OF THE HOSPITAL. These skilled and compassionate health care heroes play a vital role in nearly every facet of Hospital operations. From the bedside to the board room, Rady Children’s nurses are committed to providing exceptional care for kids in the San Diego community and beyond. “When people come to Rady Children’s, they’ll be meeting ‘Team Rady.’ Whether they go to one of our urgent care centers, our emergency department, a surgical department or a clinic, they’re going to meet a friendly face, somebody who wants to help them, who wants to listen and understand what they’re going through and be a hand to hold along the way,” says Lindsey Ryan, PhD, Associate Chief Nursing Officer at Rady Children’s. “We pride ourselves on getting to know our patients and families and establishing strong relationships with them while making sure that they’re able to get the care they need.” Bedside nurses are often the first person a patient sees when they wake up and the last person they see before bedtime. At Rady Children’s, typical nursing shifts are 12 hours and start out with a huddle where nurses from the previous shift fill them in on the day’s happenings and share any team shout outs
like birthdays, anniversaries or compliments from patients or families. Nurses are then briefed on their specific patients. After an introduction, nurses look over the patient to make sure that what they’re seeing matches what the other person reported, double check and dispense medications and talk with the patient’s family to see if there are any concerns that need to be addressed or escalated their doctor. Nurses at Rady Children’s also work with other staff members to coordinate care. “We collaborate with a lot of different disciplines throughout our shift,” says Dr. Ryan. “Our child life specialists help prepare our patients and families for any procedures that may be happening and help our kiddos process what’s going on during the hospitalization. We also have our social work team who help us navigate the hospital course. We have our providers who are helping direct the plan of care in conjunction with our nursing staff. Our respiratory therapists, physical therapists and occupational therapists also work with our patients and families. We make sure we’re all working toward the same goals, and are communicating consistently with our patients and their families.” And much in the same way nurses make patients feel welcome, the Hospital takes steps to make new nurses feel welcome, too. Rady Children’s has launched a
10 HEALTHY KIDS MAGAZINE SPRING 2024
Magnet recognition is much more than a title. The designation from the American Nurses Credentialing Center is the highest national honor for nursing excellence and signifies professionalism, teamwork and superiority in patient care. Rady Children’s has been Magnet- recognized since 2017. Achieving Magnet recognition is no easy feat. Hospitals must pass a rigorous assessment in which they’re judged on more than 90 different components. The process also includes an electronic application, an on-site visit and an extensive review by the Commission on Magnet Recognition. “We demonstrate not only clinical outcomes, but we also have to show how nurses are empowered, engaged and performing at an excellent level across all disciplines within healthcare,” says Dr. Ryan. Magnet recognition also comes with perks. Research shows that health care organizations with Magnet accreditation have patients who are more satisfied with nurse communication and the availability of help, and among their nursing staff, higher job satisfaction and less turnover. THE MEANING OF MAGNET
WE PRIDE OURSELVES ON GETTING TO KNOW OUR PATIENTS AND FAMILIES AND ESTABLISHING STRONG RELATIONSHIPS WITH THEM WHILE MAKING SURE THAT THEY’RE ABLE TO GET THE CARE THEY NEED.
residency program for new nursing graduates, called the New Graduate Transition to Practice Program. This nursing “bootcamp” incorporates classroom, virtual and hands-on learning, plus guidance from more seasoned nurses. There are also programs for experienced nurses transitioning into pediatrics and for travel nurses converting to full-time staff members.
“We have been very creative in how we can recruit and retain our staff,” Dr. Ryan says.
No matter which department a nurse works in, many say their favorite part of the job is working with the kids. Dr. Ryan recalls one of her most memorable patients, a boy named Nemo who we flew in from Arizona suffering from heart failure. He was placed on the transplant list for a heart, but his condition continued to decline, and doctors determined he needed a kidney transplant as well. He became the first double transplant patient at Rady Children’s (read more of Nemo’s story at rchsd.org) and is now healthy and back home. “It’s indescribable the work that we do each and every day,” she says. “It’s incredible to be a part of a team that will be making a difference in the lives of patients for many, many years to come.”
SPRING 2024 HEALTHY KIDS MAGAZINE 11
HEALTHY HABITS
Not All Heroes Wear Capes ON CAMPUS For the past 35 years, a Lakeside-based window cleaning
“They love seeing the kids’ eyes light up. There’s something special about superheroes that the kids
service has been ensuring that the windows of San Diego sparkle and shine. Owners Cheryl and Dennis Dwyer, who donate their services to Rady Children’s, have also been bringing smiles to patients’ faces with their whimsical take on employee workwear. For one special weekend each year, kids in the Hospital may get a glimpse of a costumed superhero washing windows just outside their room. “We wanted to do something for kids,” says Cheryl. “We wanted to find a way to give back to the community, and we thought that this was a really good way since some of those kids are isolated. Kids just love dressing up.” The Dwyers had seen news coverage of similar happenings at other children’s hospitals around the country and decided to bring the trend to Rady Children’s eight years ago. Dennis and the couple’s son, Kolby, also get in on the apparel action, dressing up as Captain America and Superman, respectively. Other members of the crew over the years have taken on the persona of Spider-Man, the Hulk, Green Lantern, Thor, Batman, Iron Man and Mr. Incredible—and they never miss the chance to participate. “Our team is so excited about it,” Cheryl says.
relate to. It kind of gets their minds off of the situations they’re going through and it’s just really a special time.” The kids also get to learn some helpful on-the-job skills. The superheroes also come inside and interact with the kids, at times enlisting their “help” in cleaning windows. “There are kids who come running down the hall to grab a hold of our guys. They throw their arms around our guys’ legs and say, ‘Captain America, I was looking for you,’” recounts Cheryl. “And our guys are great too. They’ll even ask them like, ‘Hey, do you want to learn how to clean a window?’ And they’ll show them how to squeegee.” Cheryl says giving back is a big part of the the company’s DNA. The Dwyers have no plans on slowing down anytime soon. “We have always been more of a generous company,” she says. “You can take money and contribute it, which we do, but goes beyond that. The experiences that we get— you don’t get that when you just write a check. You get to truly be a part of those kids’ lives that day.”
THERE’S SOMETHING
SPECIAL ABOUT SUPERHEROES THAT THE KIDS RELATE TO. IT GETS THEIR MINDS OFF THE SITUATIONS THEY’RE GOING THROUGH.
12 HEALTHY KIDS MAGAZINE SPRING 2024
COMMUNITY Calendar Six ways to show your support for Rady Children’s Hospital this spring
12TH ANNUAL DATE NIGHT FOR A CAUSE What better
SWEET CHARITY The Fuerte Hills Auxiliary
JOINING HANDS FOR RADY CHILDREN’S
APR. 13
APR. 24
APR. 27
Enjoy tiki cocktails and island-inspired bites at this luau-style fundraiser at the Kyocera House in La Jolla for the Neuroscience Institute for Pediatric Inflammatory Brain Disorders.
way to benefit the Hospital’s Healing Arts program than by rocking out to the sounds of Atomic Groove at Belly Up Tavern in Solana Beach.
Unit is hosting their annual spring fundraiser at the Singing Hills Golf Resort. Net proceeds will benefit the Division of Diabetes/Endocrinology.
WILD WALKABOUT Fundraise with your family
CELEBRATION OF CHAMPIONS The signature
APR. 27
APR. 1 4
TABLETOPS WITH A TWIST Join the Poway Unit of the
MAY 18
event lets pediatric cancer patients and their families enjoy a day away from the Hospital. The festivities include in an inspirational Olympic- style relay passing the symbolic “torch of life” and celebrity guests.
and experience the San Diego Zoo before the gates open to the public at the inaugural Rady Children’s Wild Walkabout. Space is limited, so sign up today.
Rady Children’s Hospital Auxiliary for food, drinks, prizes and more at its fundraiser at Alesmith Brewing Company.
CHEERS FOR CHARITY Enjoy beverages
APR. 20
GARDEN WALK Tour various gardens in the Point Loma
APR. 27
FOR MORE WAYS TO SUPPORT RADY CHILDREN’S ALL YEAR LONG, VISIT RADYFOUNDATION.COM/ EVENTS
and bites at this wine, beer and food festival at Duchateau Design Showroom. Proceeds benefit the Peckham Center for Cancer and Blood Disorders.
area, then shop till you drop at a boutique at All Souls’ Church. Proceeds benefit the Hospital’s Craniofacial Department.
SPRING 2024 HEALTHY KIDS MAGAZINE 13
h HOPEFUL AT
14 HEALTHY KIDS MAGAZINE SPRING 2024
A first-time mom puts her baby girl’s heart in the hands of the Rady Children’s CTICU
Ana Castaneda was 24 weeks into her first pregnancy when a routine sonogram turned her world upside down. “I was happy, healthy and hopeful, but this news was a complete whirlwind,” Ana recalls. “At the time, I had no suspicion anything was wrong. I was happy, and everyone said I had that pregnancy glow. Of course, I was tired because I was growing a little human, but it was my first pregnancy, so I thought everything was good,” she continues. “When my doctor saw something abnormal on my exam and sent me for another sonogram, they told me her heart and cardiac anatomy weren’t developing correctly. It was a huge blow.” malformations that require immediate surgery upon birth. Babies with POC also may not survive longer than a few days. Ana’s baby also had a coarctation of the heart Ana learned that her unborn daughter had Pentalogy of Cantrell (POC), a group of five congenital defects of the heart, pericardium, diaphragm, sternum and abdominal wall. A complex condition with a survival rate and prognosis that vary greatly depending on its severity, POC can present with a multitude of anatomical
SPRING 2024 HEALTHY KIDS MAGAZINE 15
aorta, meaning that her aorta was narrower than normal. This can cause the heart to lose its ability to pump enough blood to other organs, which can result in organ failure. “They told me her sternum was not fully intact and that as soon as she was born, they would know how severe it was and if she needed surgery right away,” Ana says. “I'm a single mom. I was pushed to the brink, thinking of what kind of quality of life my baby was going to have and whether I would be able to handle it on my own. I talked to many people, and I prayed.” PREPARING FOR THE UNKNOWN With three more months to go before her baby’s due date, Ana moved forward, preparing as best she could for the unknown complications she and her baby would experience once she was welcomed into the world. Still, Ana continued to feel physically well. “I was moving around, eating healthy, going to work—I still felt great,” she says. “I stopped working three or four weeks before my scheduled c-section, but only to mentally prepare myself for how she was going to come into the world. I wanted to get all the information I could, so I could expect the unexpected.” In September 2021, Ana went in for her scheduled delivery at a local hospital close to Rady Children’s. The proximity enables newborns with complex medical needs to immediately be transferred to Rady Children’s intensive care units. “As much as I prepared, I was still unprepared for how huge of a surgery a c-section is,” she recalls. “But it didn’t matter. I had to get up and get moving because it wasn’t about me, it was about my little girl, and I had to go see her.” Within a day of giving birth, Ana was visiting her new daughter, Amanda, in the cardiothoracic intensive care unit (CTICU) at Rady Children’s. “The first time I saw her, she was connected to tubes, and it was very overwhelming to see her that way,” she says. “It was sad and depressing, but my family and friends were all there for me, especially my mom. She was a rockstar and she helped me through it.”
16 HEALTHY KIDS MAGAZINE SPRING 2024
Three generations of strong women: Amanda with her mom, grandmother and aunt.
A LONG ROAD AHEAD Amanda’s birth was just the beginning. Now, the real work began. Upon birth, Amanda’s doctors discovered that she had a sternum, but it wasn’t fused together. She needed surgery right away to correct that, as well as her narrow aorta. “Amanda had a complex syndrome called PHACES syndrome,” explains Jose Honold, MD, a neonatologist at Rady Children’s and clinical professor of pediatrics at UC San Diego School of Medicine. “This syndrome consists of several anomalies including a coarctation of the aorta. She also had ectopia cordis, a rare congenital condition in which some or all of a baby’s heart doesn’t have the typical coverage of the breastbone, and instead lies beneath a layer of skin and appears to be outside the chest. She also had facial hemangioma, which is a vascular tumor in the face.” Luckily, in Amanda’s case, all these conditions were reparable. Within a week of her birth, Amanda underwent surgery to repair her aorta with John Nigro, MD, a cardiothoracic and heart transplant surgeon, Division Chief of Cardiac Surgery & Cardiac
home just five weeks and one day after she was born! It was a surprise, but a very pleasant one.” According to Harjot Bassi, MD, a board- certified pediatric intensivist, the respiratory director of the CTICU at Rady Children’s, and an associate clinical professor of pediatrics at UC San Diego School of Medicine, the key to Amanda’s success was her ability to quickly regain normal airway function. Airway abnormalities are common in patients with complex congenital heart disease. “Amanda did really well from her intracardiac repair, especially based on the complexity of her sternum and the amount of surgery she required,” Dr. Bassi says. “What stood out to me about her case was her airway. We were worried that extubating her would be challenging because of her short neck and the challenges with her sternum. But in the end, we were able to provide enough respiratory support, and she surprised us by doing so well after such a complex surgery. She progressed forward from a nutritional standpoint and didn’t have any complications.” HEADING HOME TO HEAL Because Amanda was ready to head home so soon, her mom needed a crash course in caring for an infant with complex medical needs. Thankfully, the Rady Children’s team was at the
The first time I saw her, she was connected to tubes, and it was very overwhelming to see her that way. It was sad and depressing, but my family and friends were all there for me, especially my mom.
Transplant Services at Rady Children's Hospital and clinical professor of surgery at UC San Diego School of Medicine. Within a week, Dr. Nigro performed a second surgery to fuse her sternum together. “It was a lot for her little body to go through within a few short weeks of her life,” Ana recalls. But Amanda was strong, and she did it, faster than anyone could have predicted. “From the start, her cardiologists said Amanda could be in the hospital anywhere from three months to a year,” Ana says. “She surprised us all when she was ready to go
SPRING 2024 HEALTHY KIDS MAGAZINE 17
ready with all the resources and training she needed for a successful transition from hospital to home. “When they told me she was ready, I said, ‘OK, what’s next?’ and they told me to come in for training,” Ana recalls. “They said she would go home with a feeding tube, so that was something I had to learn, but they also said that when she’s home, she’s going to be so loved that she’s going to heal so much faster.” Amanda’s nurses taught Ana how to gauge the amount of food she needed, how to use the feeding tube, how to keep track of her caloric intake, manage her medications and what to do in case of a feeding emergency. Ana took video of it all and shared it with her parents and her siblings, so she’d have the comfort of knowing her support system was as educated as she was. “It was so much to learn, but the nurses showed me everything and then gave me a pop quiz—I got straight A’s,” she jokes. “It was all very overwhelming, but that’s part of the process of being a parent with a baby that has high medical needs. You have to expect the unexpected. Even though Amanda came home earlier than expected—and I didn’t expect that I could handle all of this—I did, and she’s not only surviving, but she’s also thriving!” Now two-and-a-half, Amanda is still under the care of her Rady Children’s team, which includes a cardiologist, neurologist, otolaryngologist (ENT) and dermatologist. “We had so many different specialists and therapies, and so many people caring for us at Rady Children’s—they’re like a second family,” Ana says. “Throughout it all, they were so amazing. They are considerate and they really listen to you. Amanda was a little human who couldn’t speak for herself, but now she’s so strong and sassy and happy. She has no idea all that she went through—all she knows is what she wants and what she doesn’t want, and she’s not afraid to let you know!”
On Amanda’s second birthday, she and her mom brought donuts to the Hospital to celebrate with the CTICU team that had cared for Amanda. “This was a thank you to the team who took care of her 24/7,” Ana says. “That day I felt it all come full circle, because she wouldn’t be here without them. We wanted to show them the significance of what they do. They truly save lives, and Amanda is living proof.” Amanda was a little human who couldn’t speak for herself, but now she’s so strong and
sassy and happy. She has no idea all that she went through—all she knows is what she wants and what she doesn’t want, and she,s not let you
18 HEALTHY KIDS MAGAZINE SPRING 2024
afraid t o know
SPRING 2024 HEALTHY KIDS MAGAZINE 19
Mending Broken
Hearts Every parent knows the heart-
Rady Childen’s CTICU provides extra TLC to kids with complex cardiac conditions
wrenching feeling when their child is unwell. But what happens when it's their little heart that needs healing? Enter Rady Children’s cardiothoracic intensive care unit (CTICU), a place where expert care and compassion merge to mend the tiniest hearts.
20 HEALTHY KIDS MAGAZINE SPRING 2024
Rady Children’s is the only place in the San Diego region where pediatric cardiologists work alongside neonatologists, airway specialists, otolaryngologists (ENT) and other specialists to seamlessly treat young cardiac patients with many co-existing conditions. The Hospital continues to demonstrate its commitment to caring for a multitude of complicated medical needs in its 30-bed CTICU. “Rady Children’s has been performing cardiac surgery on infants for more than 30 years,” explains Jose Honold, MD, a neonatologist at Rady Children’s and clinical professor of pediatrics at UC San Diego School of Medicine. “Until 2014, the neonatologists would serve as the intensivists, managing cardiac patients’ pre-operative and post-operative care. Then, in 2014, the new CTICU was created, and the Hospital brought on new critical care cardiologists to manage these complex patients in the new cardiac surgery unit,” he continues. “Now, 10 years later, the neonatologists continue to play a role in managing the care of these cardiac patients, mainly due to the multiple other problems they often experience.” The reasons for the CTICU’s creation a decade ago are many. First, Dr. Honold explains, is the growing prevalence of congenital heart disease, which is found in approximately 4 to 8 new cases per 1,000 deliveries. “In San Diego, we have approximately 50,000 to 60,000 deliveries per year, so we expect to see anywhere from 200 to 400 new cases of congenital heart disease every year,” he says. Harjot Bassi, MD, a board-certified pediatric intensivist, the respiratory director of the CTICU at Rady Children’s
and an associate clinical professor of pediatrics at UC San Diego School of Medicine, agrees that the incidence of congenital heart disease was a driving factor for establishing the unit. “There was enough
“
In San Diego, we have approximately 50,000 to 60,000 deliveries per year, so we expect to see anywhere from 200 to 400 new cases of congenital heart disease every year. JOSE HONOLD, MD,
growth in the number of cardiac patients to make it clear that they would benefit from their own specialized unit,” she says. “We saw that we had the patient volume and, thankfully, we had the resources to set it up to meet that demand.” However, the number of patients with congenital heart disease are just one part of the equation. The need for the CTICU also stems from patients whose cardiac issues arose after birth, as well as the additional levels of care all these young cardiac patients require. “At its core, the CTICU
is an isolated unit for patients who require intensive
care for heart disease. Generally speaking, they are neonates and infants; however, we still see children and adolescents,” Dr.
NEONATOLOGIST AT RADY CHILDREN’S AND CLINICAL PROFESSOR OF PEDIATRICS AT UC SAN DIEGO SCHOOL OF MEDICINE
Bassi explains. “The majority of our patients had a prenatal diagnosis, but there is still a small percentage of infants and children who were diagnosed postnatally or
SPRING 2024 HEALTHY KIDS MAGAZINE 21
“
As part of the multidisciplinary setup in the CTICU, from diagnosis on, there’s a close collaborat ion between the cardiologists, surgeons, specialists and the families. HARJOT BASSI, MD, BOARD-CERTIFIED PEDIATRIC
as a secondary diagnosis after they failed their congenital heart screening. Others we see in the unit due to readmission for known cardiac disease or for a revision of previous cardiac surgery.” Dr. Bassi notes that the demand for CTICU services has continued to rise due to Rady Children’s reputation for clinical excellence and its position outside the San Diego region as a major referral center.
That’s why the multidisciplinary care and collaboration offered by Rady Children’s highly trained specialists is so critical. In the CTICU, pediatric cardiologists work alongside a variety of specialists to manage other life- threatening issues. Chief among them are airway issues. “One of the unique things about the CTICU is that we take care of patients with both complex cardiac conditions and airway abnormalities,” Dr. Bassi says. “It is very common with syndromes that cause congenital heart disease to also result in changes to the anatomy that require airway interventions. That’s why in the CTICU we work with ENTs and pulmonologists to provide these necessary interventions.” Prior to the creation of the CTICU, these patients would have been treated in the neonatal intensive care unit (NICU) or the pediatric intensive care unit (PICU). While those units provide optimal care for critical patients, the CTICU offers the collaborative care that patients with multiple co-morbidities truly need. “These patients are a little more fragile because their physiology is so unique,” Dr. Bassi says, adding that patients
“Now, we get a lot of referrals from all over the West Coast, Arizona and Utah,” she says. “Hawaii has also always been a major referrer
INTENSIVIST, RESPIRATORY DIRECTOR OF THE CTICU AT RADY CHILDREN’S, ASSOCIATE CLINICAL PROFESSOR OF PEDIATRICS AT UC SAN DIEGO SCHOOL OF MEDICINE
in the CTICU not only benefit from the multidisciplinary teamwork, but also the technology available to them and the variety of procedures the unit is equipped to perform. “One thing that is so unique to our patient population in the CTICU that you would not see in the NICU or PICU is that their native
to Rady Children’s, and that has continued to grow. While these partners have the ability to do cardiac surgery, they can’t do transplants, so they refer to us, and it has been great to work with them on their complex cases.”
Why Multidisciplinary Care Matters For many of the patients in the CTICU, their cardiac issues are just the beginning of their health journey.
22 HEALTHY KIDS MAGAZINE SPRING 2024
heart is no longer working effectively, whether that’s due to a congenital or acquired heart defect,” she says, “we can keep them alive on artificial/ mechanical support to bridge them to transplant and recovery. This is an area that has seen tremendous growth in the past few years, and it’s exciting that we are able to support even the tiniest babies with this technology.” Support is one of the words that defines the care provided in the CTICU. In addition to the specialized medical care provided by an expert clinical team, patients and their families also benefit from the support of Rady Children’s many other departments while they’re on the unit and as they prepare for discharge and life beyond the Hospital. From parent education and training to social work, these services are key to a successful recovery. “As part of the multidisciplinary setup in the CTICU, from diagnosis on, there’s a close collaboration between the cardiologists, surgeons, specialists and the families. We build upon that foundation throughout their stay to provide information and education and
engage them in the care plan,” Dr. Bassi concludes. “Our social workers and supportive care team are part of this plan, serving as an extra resource
for the families to address their concerns and what their goals are when they get home. We have really grown supportive care services Hospital- wide, and we are proud to be able to provide resources and support for families of children with complex cardiac needs.” TOP: Baby Amanda was born with a congenital heart defect and other issues, but she's now happy and healthy thanks to the multidisciplinary care she received in the CTICU. BOTTOM: Kids with complex cardiac conditions benefit from specialized care and state-of- the-art equipment
SPRING 2024 HEALTHY KIDS MAGAZINE 23
TRUSTED, INNOVATIVE CARE
CLOSER TO HOME IN SOUTHWEST RIVERSIDE COUNTY
Local families have more access to services provided by Rady Children’s Hospital-San Diego than ever before, with multiple facilities throughout southwest Riverside County dedicated to compassionate, high-quality and leading-edge care for children of all ages SPECIALTY SERVICES THROUGH RADY CHILDREN’S SPECIALISTS OF SAN DIEGO Allergy & Immunology Cardiology Dermatology Endocrinology Neurology Ophthalmology Orthopedics & Scoliosis
Radiology Rehabilitation Medicine Rheumatology Sports Medicine Urgent Care (temporarily closed) Urology
Otolaryngology Pediatric Surgery (consulting) Pulmonary/Respiratory Medicine
Fetal Cardiology Gastroenterology Maternal-Fetal Medicine Nephrology
DEVELOPMENT SERVICES
Alexa’s Playful Learning Academy for Young Children (PLAYC), a unique early education program Autism Discovery Institute Audiology Developmental Evaluation Clinic
High-Risk Infant Follow-Up Clinic Occupational Therapy Physical Therapy Speech-Language Pathology
For more information, visit www.rchsd.org/locations or contact Customer Service & Referrals at 800-788-9029 or refsvc@rchsd.org MURRIETA MEDICAL PLAZA 25170 Hancock Ave. Murrieta, CA 92562 For more information, visit www.rchsd.org/locations or contact Customer Service & Referrals at 800-788-9029 or refsvc@rchsd.org
Healing Harmonies They say that music soothes the soul, but at Rady Children’s, the sounds of harps, drums, guitars and more also help heal mind, body and spirit.
SPRING 2024 HEALTHY KIDS MAGAZINE 25
INSIDE RADY CHILDREN’S
FEEL THE BEAT Musician brings connection and calm to Rady Children’s, one note at a time We may all march to the beat of our own drum. But put those beats together and it can create a beautiful rhythm. That profound percussion can be felt twice a week in a surprising place: the Child and Adolescent Psychiatry Services (CAPS) unit at Rady Children’s. An inpatient unit for children under 18 struggling with depression, psychosis, anxiety disorders, substance abuse and other mental health issues, CAPS has offered a stage for musician Karl Anthony to bring the power of music to kids. For nearly a decade, Anthony has led hour-long drum circles at CAPS, engaging patients in an activity that gives them the opportunity to connect, listen, learn and lead. “I have been a drum circle facilitator for 35 years, and I realized long ago that drumming is something kids love to do,” Anthony says. “It’s unifying and equalizing, and you really have to listen, because the only way to drum as a group is to listen to each other’s rhythm. I teach them how to lead the circle, so everyone gets the chance to be a leader,” he continues. “Plus, it’s an hour STAFF SPOTLIGHT
26 HEALTHY KIDS MAGAZINE SPRING 2024
week, Anthony can be found at the Helen Bernardy Center for Medically Fragile Children, where he performs Healing Garden and playroom concerts for patients with complex medical needs. Anthony, who has made a nearly 40-year career out of performing for children, finds fulfillment in bringing the joy of music to young patients, their families and Hospital staff alike. “For patients, the music can help them forget about their fear for a few minutes—whether it’s from a tragic diagnosis or even a blood draw. It can also be part of a
of movement, and that in itself is a stress reliever. They get to spend an hour connecting in a way that’s participatory, and it’s a break from sitting and talking about their feelings.” Anthony has heard from staff who tell him how therapeutic drumming is for their young patients. “Staff have told me that someone could be acting out all morning, but once they participate in the drum circle, the rest of the day goes better,” he says. “It’s a great way to release whatever emotions they’re feeling, and I knew it would be the perfect activity for this group.”
celebration and having fun!” he says. “I have to be able to read the energy in a room and know how the music needs to be.” For families, Anthony also hopes to lift the spirits and the weight of their child’s illness as much as possible. “Families are often feeling more than the patient. Kids are good at being kids, and they often don’t know the whole story about what they’re dealing with. But the family is holding onto so much possibility, hope and tragedy at the same time,” he says. “I try to simply create a connection and engage them in something that can reduce even a little bit of that stress.” Finally, for staff, Anthony has heard how much music can mean to them throughout their challenging days.
Anthony’s drum circles at CAPS are just one facet of his healing repertoire. As part of the Hospital’s Healing Arts program, which also includes art and storytelling, Anthony brings a variety of instruments to units across the Rady Children’s campus. He starts his day bright and early, greeting staff at shift change with his handpan drum, which fills the halls with soothing sounds reminiscent of a day spa. “I play outside the elevators as staff are coming and going” he explains. “This not only gives me the chance to elevate their mood, but I also get the opportunity to get to know the staff more. This way, they know I’m around and can be requested to play for their patients who they think could benefit from something different.” The rest of Anthony’s day is spent doing just that: visiting patients who may need the power of music to help them heal. “I walk the halls with my guitar and go
I TRY TO SIMPLY CREATE A
CONNECTION AND ENGAGE THEM IN SOMETHING THAT CAN REDUCE EVEN A LITTLE BIT
OF THAT STRESS.
“The stress that runs through the staff is pretty much constant. They’re always running. But I love it when they walk by me and say, ‘You have no idea how much I needed this today,’” he says. “Music helps people breathe a little deeper, relax and be fully present with what’s in front of them. It’s such a supportive component of the healing environment,” he concludes. “Music makes life better. It brings joy, and we can use more of that in the world.”
from one department to another,” he says. “Sometimes the nurses will give me a list of patients they think would like a visit. Sometimes I just go into patient rooms and ask if they’d like to listen or sing. I try to go to the emergency department in the afternoon when it’s busy and play the handpan to bring the stressful energy down.” Anthony also joins forces with fellow Healing Arts musician Jose Smith, who plays the harp and accordion. Additionally, throughout the
SPRING 2024 HEALTHY KIDS MAGAZINE 27
Page i Page ii Page 1 Page 2 Page 3 Page 4 Page 5 Page 6 Page 7 Page 8 Page 9 Page 10 Page 11 Page 12 Page 13 Page 14 Page 15 Page 16 Page 17 Page 18 Page 19 Page 20 Page 21 Page 22 Page 23 Page 24 Page 25 Page 26 Page 27 Page 28 Page 29 Page 30 Page 31 Page 32 Page 33 Page 34Made with FlippingBook Online newsletter maker