The Sound of Music - A Young Musician Shines with the Help of Cochlear Implants
WINTER 2024
NURSES DELIVER LIFESAVING CARE A CHRONIC PAIN PATIENT’S JOURNEY TO RECOVERY AI IN PEDIATRICS
A PUBLICATION BY
THANKS TO OUR CARING NETWORK!
Looking Back, Moving Forward t Rady Children’s, every new year presents a new opportunity to learn from the successes, lessons and discoveries of prior years to continue transforming the care we provide—and bring new hope to families right here in San Diego. Our focus on building a healthier and happier future for San Diego and its children has never been stronger. On the pages that follow, you will see stories highlighting this transformation, including the inspiring story of a cello player who can hear, thanks to the incredible work of our Division of Otolaryngology. You’ll also get a sneak peek into how we are transforming our campus to expand our services to even more kids in need. But transforming pediatric care cannot be done on our own; it takes commitment from our incredible community. Our community’s support of Rady Children’s was highlighted during our annual Light the Way holiday fundraising celebration. Featuring our patient ambassadors and supported by generous donors, this festive event creates a memorable experience for children and their families spending their holidays in the Hospital. It also propels lifesaving technology and innovative research that happens all year long at Rady Children’s. Important resources, such as child life specialists, are made possible through the generosity of people like you. If you haven’t had the opportunity to contribute, it’s not too late! Light the Way shines as a symbol of hope during what can be challenging times and embodies the incredible power of philanthropy. Every single day, we are transforming the way we care for kids in our community, and although we are honored to have earned recognition as one of the 10 best children’s hospitals in the nation, there is more to do! We strive for better outcomes, new discoveries and advanced treatments for our young patients. Your unwavering support makes this goal a reality. Thank you for being an integral part of our Rady Children’s family and for supporting us on this incredible journey. Together, we are lighting the way toward a brighter and healthier future for all children in San Diego and beyond. A
@radychildrens Rady Children’s patients and families enjoyed an unforgettable performance by Ed Sheeran at Curebound’s Concerts for Cures at the Rady Shell. The event raised $5.5 million for cancer research.
@rady_ncu Rady Children’s North Coast Auxiliary Unit’s Date Night for a Cause was a huge success. It raised $78,000 for the Hospital’s Orthopedic Institute.
STEPHEN JENNINGS áÈÀ®v¨vÀÃ?ìÀ v®O®³À_IÀÃ®È Rady Children’s áËÈÛÀȳÀ Rady Children’s Hospital Foundation
@radychildrens Six-year old Noah won’t let leukemia keep him down. He delivered the Padres game ball in honor of Childhood Cancer Awareness Month.
WINTER 2024 HEALTHY KIDS MAGAZINE 1
Hospital Foundation 3020 Children’s Way San Diego, CA 92123 858-576-1700 RCHSD.org
Stephen Jennings áÈÀ®v¨vÀÃ?íÀv®O®³À_IÀîÈƜLvâ¨À®ƺÃ(³Ã½Èv¨ 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 Susan Herman, DNP, MSN, RN, NEA-BC, CENP 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 Board of Directors David F. Hale
1230 Columbia Street, Suite 800, San Diego, CA, 92101 619-230-9292 sandiegomagazine.com
I˨ÃÀv®³®È®È?íÀ }īďřLďìĊĮďĊ áËÈÛ?íÀ Claire Johnson Custom Content Editor Sarah Sapeda Art Director w ĉ ĊĴì O Æř Contributing Designer Analia Driscoll
Contributing Writers Megan Matthew Jennifer McEntee Christina Orlovsky Contributing Copy Editor Kelly Davis Contributing Photographer Paul Body
UNITS 19
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 ðĮĴìÐīÐæðďĊȸĮďĊăřÌÐĮðæĊ ĴÐÌĨÐÌð ĴīðÆĴī ķĉ ÆÐĊĴÐīȘt Ìř ìðăÌīÐĊȸĮðĮ ĊďĊĨīďťĴďīæ Ċðš ĴðďĊĴì ĴīÐăðÐĮďĊ donations to support its mission. For more information, visit www.rchsd.org. Healthy Kids ĉ æ šðĊÐɁðĊÆăķÌÐĮĴìðīÌȭĨ īĴřÆďĊĴÐĊĴș ÌŒÐīĴðĮðĊæ ĊÌȥďīœÐÅĮðĴÐìřĨÐīăðĊāĮåīďĉďķĴĮðÌÐ ÅķĮðĊÐĮĮÐĮ ĊÌďīæ Ċðš ĴðďĊĮȘ}ìÐðīĨă ÆÐĉÐĊĴðĊĴìðĮĨķÅăðÆ ĴðďĊðĮĊďĴ ĊÐĊÌďīĮÐĉÐĊĴåďīĴìÐĮÐÅķĮðĊÐĮĮÐĮďī ďīæ Ċðš ĴðďĊĮďīĴìÐðīĨīďÌķÆĴĮșĉ ĴÐīð ăĮșĮÐīŒðÆÐĮďīīÐĮďķīÆÐĮșĊďīÌďÐĮðĴīÐŦÐÆĴĴìÐŒðÐœĮȥĨďăðÆðÐĮďåt Ìř ìðăÌīÐĊȸĮ>ďĮĨðĴ ăȭw Ċ#ðÐæďȘɁ Healthy Kids ĉ æ šðĊÐɁ ĊÌðĴĮ Ũăð ĴÐĮĮì ăăĊďĴÅÐăð ÅăÐĴď ĊřĨ īĴř Į īÐĮķăĴďå 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. ďīæȥĊďĊÌðĮÆīðĉðĊ ĴðďĊåďīĉďīÐðĊåďīĉ ĴðďĊȘO Ċæķ æÐ ĮĮðĮĴ ĊÆÐĮÐīŒðÆÐĮ īÐ Œ ðă ÅăÐĴďĨ ĴðÐĊĴĮ ĊÌŒðĮðĴďīĮ åīÐÐďåÆì īæÐȘ ăăǧǤǧȭǨǥǥȭǣǟǨǥȥ}##ȚǧǤǧȭǥǡǦȭǢǟǟǡåďīĉďīÐðĊåďīĉ ĴðďĊȘ
Learn more about joining the Auxiliary or how to get involved:
radyfoundation.org/auxiliary
WINTER 05 HEALTHY HABITS An inside look at the big remodel underway at Rady
Children’s, how families help improve care, a chronic pain patient’s journey to recovery and more 14 HEAR HEAR The Hearing Program at Rady Children’s is the most comprehensive in California and provides individualized treatment to children with hearing loss 16 MUSIC TO HIS EARS The hearing-impaired son of a concert musician finds his own love for music with the help of cochlear implants
INSIDE RADY CHILDREN’S
26 STAFF SPOTLIGHT Two pediatric intensive care nurses who deliver lifesaving therapies share what they love about what they do 32 PAY IT FORWARD A mother of a child with a an extremely rare condition starts a support group for families on the same path
WINTER 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 `Ài½Ã>Ã>LiiwV>ÀÞv your IRA or other retirement >VVÕÌ°ÌÃëi]Ì>Ý smart and makes a lasting «>VÌV ` ` i>Ì °
CREATE THE FUTURE SHE DESERVES
2
3
1
7Ì ÕÌ >Û}Ì «>ÀÌÜÌ ÞÕÀiÞ Ì`>Þ]ÞÕÜÌ >Ì ÞÕ>Ài>}> }vÌ>À}iÀÌ >ÞÕ Ì Õ} Ì«ÃÃLi°
Download the LiiwV>ÀÞ`iÃ}>Ì vÀvÀÞÕÀ,č «ÀÛ`iÀ½ÃÜiLÃÌi
Ãi> «iÀViÌ>}ivÌ i >VVÕÌÞÕÜÃ Ì }vÌÌ,>`Þ `Ài½Ã
-}>`ÀiÌÕÀ Ì ivÀÌÞÕÀ >`ÃÌÀ>ÌÀ
/i>À>LÕÌ>``Ì>Ü>ÞÃÌ>i>}vÌÌ ÀÕ} ÞÕÀÜ]ÌÀÕÃÌÀiÃÌ>Ìi«>] visit giftplanning.radyfoundation.org ÀV>nxnÈÈxnä{ + THANK YOU FOR INVESTING IN RADY CHILDREN’S AND HELPING THE CHILDREN OF TOMORROW.
HEALTHY HABITS New Year, Bright Ideas Rady Children’s has big things in store for 2024. In the following pages, you’ll read about some of the forward-thinking going on around campus—starting with the reimagining of the campus itself. You’ll also find out how doctors
and pharmacists are fighting back against antibiotic resistance, how patients and families influence overall care and about innovative programs that will continue to serve patients in 2024 and beyond.
WINTER 2024 HEALTHY KIDS MAGAZINE 5
HEALTHY HABITS
If you spend any time on the Rady Children’s campus, you’ve likely noticed that change is in the air—everywhere. That change is coming in the form of a major remodel, expanding the Hospital’s footprint to continue to meet the growing pediatric health care needs of the San Diego community and beyond. “This is the largest campus infrastructure remodeling we have done in our 70-year history, and it’s truly focused on meeting the needs of the community,” explains Nicholas Holmes, MD, MBA, senior ƔĤõăŨŬăŰĤûăŅŹØŅûõĠĤăėŎŨăŬØŹĤŎŅŰŎƬõăŬØŹØûƛ!ĠĤĺûŬăŅ̵ Ű̖ ̱ RŹ is really allowing us to adapt to provide the latest-breaking health care advancements and treatment modalities to people who need it the most.” The centerpiece of the expansion is a 500,000-square-foot, seven- story Intensive Care Unit and Emergency Services Pavilion, which will house 140 intensive care beds among three specialty units—a neonatal intensive care unit (NICU), cardiothoracic intensive care unit (CTICU) and pediatric intensive care unit (PICU). The pavilion will also double the capacity of the Hospital’s emergency department, from 46 to 84 beds, and add four operating rooms. Big Moves On Campus DEVELOPMENT Rady Children’s undergoes monumental remodel
Additional features include a connector to the old hospital and— much to Dr. Holmes’ delight—a new cafeteria and kitchen. “I always say that of all the hospitals I’ve been in over my 30-plus- year career, Rady Children’s has some of the best food I’ve had,” Dr. Holmes laughs. “We are taking our kitchen that was built over 35 years ago and we’re creating a bigger space to allow our food ŰăŬƔĤõăŰŰŹØƫŹŎõŬăØŹăăƔăŅò㏏ăŬėŎŎûŹĠØŹŨŬŎƔĤûăŰŰƀŰŹăŅØŅõă ØŅûŅŎƀŬĤŰĠłăŅŹėŎŬŎƀŬėØłĤĺĤăŰØŅûŰŹØƫ̖̲ §ĠăŹŎƕăŬ̵ ŰŰăƔăŅŹĠƲŎŎŬƕĤĺĺŬăłØĤŅăłŨŹƛŹŎØĺĺŎƕėŎŬėƀŹƀŬă improvements. “This is a generational transformation,” says Patrick Frias, MD, president and CEO of Rady Children’s. “We not only need to be sized and scaled appropriately to serve our community today, we need to be built for the future to meet the complex needs of families in the decades ahead.” “Designing a new space allows us to integrate more modern health care models, but when you build a new hospital, you also have to keep in mind that technology always advances,” Dr. Holmes adds. “What we will be able to do is design infrastructure support in anticipation of future needs,” he says. “Our main buildings have been around since the 1950s. This new infrastructure allows us to evolve.” One of the best parts of the reimagined campus was the ĤŅƔŎĺƔăłăŅŹŎėŰŹØƫ̐ ŨØŹĤăŅŹŰØŅûėØłĤĺĤăŰĤŅŹĠăûăŰĤęŅŨŬŎõăŰŰ̐ Dr. Holmes says. “We had over 150 sessions on Zoom and in person, since we started this in the midst of the pandemic and couldn’t meet in person, and involved over 150 people,” he says. “We even built a cardboard
6 HEALTHY KIDS MAGAZINE WINTER 2024
city in a warehouse in Kearny Mesa and built out some of the treatment rooms. We put biomedical equipment in to see if it ƕŎƀĺûƱŹØŅûƕăĤŅƔĤŹăûŰŹØƫØŅûŨĠƛŰĤõĤØŅŰŹŎĺăŹƀŰķŅŎƕĤė the design would meet their needs.” §ĠăŬăŰƀĺŹĤŅęûăŰĤęŅĤŰƱĺĺăûƕĤŹĠ
õØĺł̐ ķĤû̪ ėŬĤăŅûĺƛØŬăØŰƕĤŹĠ regional and animal themes, as well as outdoor space that includes ØŨØŬķ̪ ĺĤķăăŰŨĺØŅØûăØŅûŰăØŹĤŅę ØŬăØŰėŎŬėØłĤĺƛØŅûŰŹØƫ̖ §Ġă tower will also include large, ŰĤŅęĺă̪ ŨØŹĤăŅŹŬŎŎłŰƕĤŹĠŰŨØõă ėŎŬõØŬăęĤƔăŬŰŹŎŰŹØƛ̖ {ƔăŬØĺĺ̐ 'Ŭ̖ NŎĺłăŰŰØƛŰ̐ ŹĠă goal of the campus master plan is to continue to build upon Rady Children’s longstanding reputation for exceptional care. “This is about meeting the needs ŎėŹĠăõŎłłƀŅĤŹƛ̖ ÃăŹØķăõØŬă ŎėØĺĺŹĠăķĤûŰĤŅØŅ'ĤăęŎØŅû Imperial counties—all the way out to the Arizona border and ŅŎŬŹĠĤŅŹŎŎƀŹĠăŬŅĤƔăŬŰĤûă̖ Ãă ĠØƔăŨØŹĤăŅŹŰõŎłĤŅęĠăŬăėŬŎł ØĺĺŎƔăŬŹĠăƕŎŬĺûòăõØƀŰăƕă ĠØƔăØŅØòƀŅûØŅõăŎėŬăŅŎƕŅăû łăûĤõØĺăƚŨăŬŹŰ̐ ØŰăƔĤûăŅõăû
Inside the New Tower Here’s a look at each level of the new Intensive Care Unit and Emergency Services Pavilion:
THIS IS THE LARGEST CAMPUS INFRASTRUCTURE REMODELING WE HAVE DONE IN OUR 70-YEAR HISTORY, AND IT’S TRULY FOCUSED ON MEETING THE NEEDS OF THE COMMUNITY
LEVEL 1 Café and Kitchen
LEVEL 2 Radiology
LEVEL 3 Emergency Department
LEVEL 4 CTICU (cardiothoracic intensive care unit) LEVEL 5 NICU (neonatal intensive care unit) LEVEL 6 PICU (pediatric intensive care unit) LEVEL 7 Shell space for future needs
òƛŎƀŬŬØŅķĤŅęŰ̲̐ ĠăŰØƛŰ̖ ̱ {ƀŬăƚŨØŅŰĤŎŅûăłŎŅŰŹŬØŹăŰŎƀŬ õŎłłĤŹłăŅŹŹŎõŎŅŹĤŅƀĤŅęŹŎŰăŬƔăŎƀŬõŎłłƀŅĤŹƛĠăŬă̐ regionally, nationally and internationally.” Øûƛ!ĠĤĺûŬăŅ̵ ŰòŬŎķăęŬŎƀŅûŎŅŹĠăŹŬØŅŰėŎŬłØŹĤŎŅØĺ
project on August 28, 2023. The tower, which is expected to cost between $1.2 million and $1.4 million, is being supported by a $200 million ŨĺăûęăłØûăòƛ1ŬŅăŰŹØŅû1ƔăĺƛŅØûƛĤŅ˙˗˘ˠ̖ It is expected to be completed in 2027.
ROOF Helipad
WINTER 2024 HEALTHY KIDS MAGAZINE 7
HEALTHY HABITS
The Superbug Busters t Ìř ìðăÌīÐĊȸĮ ĊĴðĉðÆīďÅð ăĮĴÐœ īÌĮìðĨĴÐ ĉťæìĴĮÅ Æā æ ðĊĮĴ ĊĴðÅðďĴðÆȭīÐĮðĮĴ ĊĴÅ ÆĴÐīð TEAM RADY
There’s no doubt that antibiotics play an important role in health care. The bacteria-killing drugs revolutionized medicine and have saved countless lives since penicillin, ŹĠăƱŬŰŹØŅŹĤòĤŎŹĤõ̐ ƕØŰûĤŰõŎƔăŬăûŅăØŬĺƛØõăŅŹƀŬƛØęŎ̖ But the rise—and subsequent overuse—of antibiotics has õŎłăƕĤŹĠƀŅĤŅŹăŅûăûõŎŅŰăūƀăŅõăƯ̋ õăŬŹØĤŅòØõŹăŬĤØ ĠØƔăòăõŎłăŬăŰĤŰŹØŅŹŹŎŹĠăĤŬăƫăõŹĤƔăŅăŰŰ̐ ƕĠĤõĠĠØŰ led to a public health crisis. According to the Centers for Disease Control and Prevention, more than 2.8 million antibiotic-resistant infections occur each year and roughly 35,000 people die as a result. The CDC also reports that around 30 percent of the antibiotics prescribed in outpatient settings are unnecessary. Øûƛ!ĠĤĺûŬăŅ̵ ŰĤŰƱęĠŹĤŅęòØõķØęØĤŅŰŹØŅŹĤòĤŎŹĤõ resistance. The Hospital began monitoring its antibiotic use as early as 2007, and since 2014, has maintained ØŅØŅŹĤłĤõŬŎòĤØĺŰŹăƕØŬûŰĠĤŨŨŬŎęŬØł̐ ƕĠĤõĠØĤłŰ to oversee providers’ use of antibiotics and to look for ăłăŬęĤŅęŬăŰĤŰŹØŅõăŨØŹŹăŬŅŰòƛõŎĺĺăõŹĤŅęûØŹØŎŅƕĠĤõĠ ŹƛŨăŰŎėØŅŹĤòĤŎŹĤõŰØŬăƀŰăûØŅûƕĠăŅ̖ Ed Milder, MD, pediatric infectious disease specialist ØŅûłăûĤõØĺûĤŬăõŹŎŬėŎŬŹĠăØŅŹĤłĤõŬŎòĤØĺŰŹăƕØŬûŰĠĤŨ program at Rady Children’s, says the goal is not to discourage the use of antibiotics, but to ensure providers use the right antibiotic at the right time. The pace of the ûăƔăĺŎŨłăŅŹŎėŅăƕØŅŹĤòĤŎŹĤõŰĠØŰėØĺĺăŅòăĠĤŅûŹĠăŨØõă ŎėŬăŰĤŰŹØŅõă̐ ŰŎŨŬŎƔĤûăŬŰŅăăûŹŎòăłŎŬăõØƀŹĤŎƀŰƕĤŹĠ ŹĠăƀŰăŎėØŅŹĤòĤŎŹĤõŰŹĠØŅŹĠăƛƕăŬă˙˗ŎŬ˚˗ƛăØŬŰØęŎ̐ ƕĠăŅŨŬăŰõŬĤòĤŅęØŅŹĤòĤŎŹĤõŰĺĤòăŬØĺĺƛƕØŰŹĠăŅŎŬł̖ ̱ Ãă̵ ŬăĤŅØòĤŹŎėØŅØŬłŰŬØõăƕĤŹĠŹĠăłĤõŬŎòăŰ̲̐ says Dr. Milder. ̱
ŅŹĤòĤŎŹĤõŰŹăƕØŬûŰĠĤŨĠØŰòăăŅØęŬŎƕĤŅęăƫŎŬŹØõŬŎŰŰ ŹĠăõŎƀŅŹŬƛØŅûØŬŎƀŅûŹĠăƕŎŬĺû̐ ØŅûŹĠăĤŅõŬăØŰăû attention, a lot of it is driven by resistance. Although the same thing happens in viruses and fungus, bacterial ŬăŰĤŰŹØŅõăĤŰŹĠăłŎŰŹŨŬŎłĤŅăŅŹ̲̐ ĠăõŎŅŹĤŅƀăŰ̖ “Providers and prescribers are trying to be cautious ƕĤŹĠŹĠăĤŬØŅŹĤòĤŎŹĤõƀŰăØŅûØƕØŬăŅăŰŰõØłŨØĤęŅŰØŬă advising the public to expect antibiotics in the right Ű㏏ĤŅęŲ̋ ØŅûRŹĠĤŅķŹĠØŹĠØŰŰŹØŬŹăûŹŎĠØƔăØŅĤłŨØõŹ̖̲ Preventing antibiotic overuse can also limit the side ăƫăõŹŰŹĠØŹŰŎłăŹĤłăŰõŎłăƕĤŹĠŹĠăł̐ ĤŅõĺƀûĤŅęŹĠă possible impact to a child’s still-developing microbiome— the billions of microbes living in our bodies that are ŹĠŎƀęĠŹŹŎĤŅƲƀăŅõăăƔăŬƛŹĠĤŅęėŬŎłłŎŎûŹŎĤłłƀŅă ŰƛŰŹăłėƀŅõŹĤŎŅ̨ ØŰƕăĺĺØŰĠØłŨăŬŹĠăŰŨŬăØûŎė antibiotic-resistant superbugs via transmission to others. §ĠăØŅŹĤłĤõŬŎòĤØĺŰŹăƕØŬûŰĠĤŨŹăØłĠØŰØĺŰŎĺØƀŅõĠăû ØłƀĺŹĤûĤŰõĤŨĺĤŅØŬƛ̱ ĠØŅûŰĠØķăŰŹăƕØŬûŰĠĤŨ̲ ŨŬŎęŬØł that involves talking to providers face-to-face about their use of antibiotics and their concerns for their patients. §ĠĤŰłăŹĠŎûŎŨăŅŰƀŨØûĤØĺŎęƀăƕĠăŬăòŎŹĠŰĤûăŰõØŅ learn from each other and provide input. ̱ ĤęĠŹŅŎƕ̐ ƕă̵ ŬăƕŎŬķĤŅęĤŅŎƀŬŨăûĤØŹŬĤõR!®ƕĤŹĠŰŎłă of our sickest patients, and the physicians and nurse ŨŬØõŹĤŹĤŎŅăŬŰĠØƔăòăăŅƔăŬƛŬăŰŨŎŅŰĤƔă̲̐ ŰØƛŰØĤęă Anderson, PharmD, codirector of the antimicrobial ŰŹăƕØŬûŰĠĤŨŨŬŎęŬØłØŹØûƛ!ĠĤĺûŬăŅ̵ ŰØŅûĤŹŰ pharmacist. “We’re there to discuss appropriateness and ƕĠØŹŎƀŬęƀĤûăĺĤŅăŰŰƀęęăŰŹ̨ ĤŹõØŅòăŰŎłăŹĠĤŅęØŰ simple as reminding them that this doesn’t have to be an ĤŅûăƱŅĤŹăõŎƀŬŰă̖̲
THE FACTS ABOUT ANTIBIOTICS
Antibiotics are a class of
Now, there are many different types, and they can come in the form of pills, liquid, cream, lotion, drops,
It can take anywhere from a few hours to a few days for symptoms to begin to improve
Antibiotics don’t work on viruses, including those that cause ³¨ÃƜ®ðË®çvƜ bronchitis and COVID-19, or on certain bacterial infections, such as some ear and sinus infections
Even if your child has an
medication used to treat bacterial infections SïÀÃÈ®vÈËÀv¨ antibiotic, penicillin, was discovered in 1928
infection, his or her pediatrician
may decide antibiotics are not the
sprays and injections
best course of action—keep an open mind
8 HEALTHY KIDS MAGAZINE WINTER 2024
PROGRAMS
Family Matters
YOU TALK, WE LISTEN—AND THEN WE ACT. THAT’S THE GOAL BEHIND RADY CHILDREN’S EFFORTS TO INVOLVE PATIENT FAMILIES IN DECISION-MAKING AND CARE-IMPROVEMENT INITIATIVES. From
“It’s a wonderful group of families who actively work with Rady Children’s to bring the family voice onto campus and incorporate those ideas into patient care and policy,” ăƚŨĺØĤŅŰcØŹĠƛ!ĠŬĤŰŹŎƫăŬŰŎŅ̐ õŎ̪ õĠØĤŬŎėŹĠăD!̖ “Having experienced Rady Children’s as both a parent
advisory groups for families and teens to comprehensive patient-satisfaction surveys, Rady Children’s is fully committed to hearing the voices of patients and families. “Involving patients and families in the process of improving our environment and care delivery model has helped move our organization from good to great,” explains Lindsey Ryan, PhD, RŅŹăŬĤł!ĠĤăėqƀŬŰĤŅę{ƬõăŬØŹØûƛ Children’s. One way for family members to get involved is through the Family Advisory Council (FAC), created in 2010 as a way for patients’ families to collaborate with ĠŎŰŨĤŹØĺŰŹØƫ̖ “We want to make sure families have a voice. Through the FAC, they can use this voice on a larger scale,” Ryan says. “This group is so passionate about making
and grandparent has encouraged me to work hard for families to receive the same amazing care and outcomes our family has received, and it’s inspiring to know that Hospital administration and õĺĤŅĤõØĺŰŹØƫƕØŅŹŹŎĠăØŬŎƀŬƔŎĤõă̖̲ In addition to the overall FAC, there are ØĺŰŎĤŅŰŹĤŹƀŹă̪ ŰŨăõĤƱõØûƔĤŰŎŬƛõŎƀŅõĤĺŰ ėŎŬėØłĤĺĤăŰƕĤŹĠŰŨăõĤƱõõŎŅõăŬŅŰ̐ including cardiac, neonatology and gender identity, as well as iCAN, a group of 50 teens in grades 7-12 who advocate ėŎŬŹĠăĤŬŨăăŬŰØŅûŎƫăŬŹĠăŨăûĤØŹŬĤõ patient perspective within the Hospital and the community. By combining the work of the councils with feedback from the Hospital’s patient satisfaction surveys, Rady Children’s truly puts families’ thoughts into action.
WE ARE MORE INCLUSIVE AND
HAVE BEEN MORE THOUGHTFUL AS A RESULT OF HAVING OUR PATIENTS AND FAMILIES INVOLVED IN MANY INITIATIVES.
“We are more inclusive and have been more thoughtful as a result of having our patients and families involved in many initiatives,” Ryan concludes. “It’s been an amazing collaboration.”
sure patients and families have the resources they need, ØŅûĤŹ̵ ŰØŰŹŎƀŅûĤŅęŹĠăăƫŎŬŹŹĠăƛęŎŹŎ̐ ŹŎłØķăŰƀŬă their needs are met.” The group meets once a month, either in person or via Zoom, to discuss ways to ensure the hospital is providing ŹĠăòăŰŹõØŬăŨŎŰŰĤòĺă̖ §ĠăĤŬăƫŎŬŹŰĠØƔăŬăŰƀĺŹăûĤŅ numerous improvements over the years, including the implementation of family-centered rounds, family presence when anesthesia is administered to help reduce anxiety and patient education at the bedside. The FAC is always looking for new families to join.
FOR INFORMATION ON JOINING THE FAC, VISIT RCHSD.ORG/ABOUT-US/WHO-WE-ARE/ FAMILY-ADVISORY-COUNCIL.
WINTER 2024 HEALTHY KIDS MAGAZINE 9
HEALTHY HABITS
Amelia’s Journey to Recovery SUCCESS STORY Conquering Chronic Pain:
MISSING SCHOOL. FREQUENT VISITS TO THE EMERGENCY ROOM. DAYS SPENT IN BED FEELING DEPRESSED. THIS WAS AMELIA’S LIFE AFTER A SPORTS INJURY LEFT HER IN CONSTANT PAIN. Amelia, once a vibrant and active teenager, watched as her life, health and schoolwork spiraled downwards. She eventually was diagnosed with amplified musculoskeletal pain syndrome (AMPS), a debilitating condition where kids feel moderate to severe pain in muscles and joints despite an injury. As Amelia and her family discovered, chronic pain is something that others can’t see, but it’s very real and can deeply affect those who experience it. “Our daughter went from being active in sports and having a great time to spending a lot of time in bed,” says her mom, Katie. “She used to do well in school, even in advanced classes. But then, things changed, and she struggled with her schoolwork.” It was hard for the family to watch her suffer, so Amelia’s mom jumped into action. She researched day and night and eventually found the Children’s Specialized Hospital Chronic Pain Management Program at Rady Children’s. It’s a 28-day inpatient program for children, adolescents and young adults—typically ages 11 to 21—who continue to have significant pain and dysfunction despite trying various outpatient therapies. It’s also an opioid- and
Rady Children’s specialists use a comprehensive approach to help kids and teens facing chronic pain. Instead of relying on pain medication, the program provides coping strategies and healthy ways to deal with pain. While in the Inpatient Chronic Pain Program, Amelia engaged in a variety of treatments, including music, art and storytelling facilitated by the Rady Children’s Healing Arts Program and aquatic therapy. She also enjoyed massage, acupuncture and Healing Touch provided by the Hospital’s Integrative Medicine Program, as well as individual and group psychotherapy. A multidisciplinary team provided her care, including pediatric physicians, nurses, a patient navigator, physical therapists, occupational therapists, a psychiatrist as needed, psychologists, recreational therapists and teachers.
The team ensured a comprehensive, holistic and playful approach to Amelia’s treatment.
“Even though it’s hard, the program is also a lot of fun,” Amelia says. “We laugh a lot during the sessions. The therapists are really good at working with us and making exercises feel like games. It’s hard work, but it doesn’t feel like work; it’s just fun. I’ve started feeling happier since I realized I don’t have to be stuck doing nothing forever.” The team at Rady Children’s provided Amelia with the tools and support she needed to take back control of her life and discover hope again. “This program helps patients and families to dream again,” adds Dr. Reineke. “I am so proud to be a part of this team and so thrilled for Amelia and her family. Amelia can look forward to a future where her pain will no longer define her and where she can lead a healthy and active life once again.”
pain medication-free program, which was important to the family. “Our program focuses on helping the whole child, addressing everything about them, like their physical health, social life and emotions,” says Anke Reineke, PhD, a psychologist at Rady
OUR PROGRAM FOCUSES ON HELPING THE WHOLE CHILD, ADDRESSING EVERYTHING ABOUT THEM, LIKE THEIR PHYSICAL HEALTH, SOCIAL LIFE AND EMOTIONS
Children’s and the program’s director.
“Because often, for kids with chronic pain, it’s not just about their body hurting; it affects how they feel and think, too.”
10 HEALTHY KIDS MAGAZINE WINTER 2024
WE LAUGH A LOT DURING THE SESSIONS. THE THERAPISTS ARE REALLY GOOD AT WORKING WITH US AND MAKING EXERCISES FEEL LIKE GAMES. IT’S HARD WORK, BUT IT DOESN’T FEEL LIKE WORK; IT’S JUST FUN.
WINTER 2024 HEALTHY KIDS MAGAZINE 11
HEALTHY HABITS
Dance Dance Revolution FUNDRAISING Dance marathons raise money for Rady Children’s
College students are no strangers to all-nighters. But the all-nighters at San Diego State University and the University of San Diego may ĺŎŎķØĺĤŹŹĺăûĤƫăŬăŅŹ̖ ŎŹĠŰõĠŎŎĺŰ ŨØŬŹĤõĤŨØŹăĤŅnĤŬØõĺăqăŹƕŎŬķ 'ØŅõănØŬØŹĠŎŅŰ̐ ØŅØŹĤŎŅƕĤûă łŎƔăłăŅŹŹĠØŹăłŨŎƕăŬŰ ŰŹƀûăŅŹŰØŹłŎŬăŹĠØŅ˛˗˗õŎĺĺăęăŰ̐ ƀŅĤƔăŬŰĤŹĤăŰØŅûĠĤęĠŰõĠŎŎĺŰŹŎ õŎłăŹŎęăŹĠăŬØŅûûØŅõăŹĠăŅĤęĠŹ ØƕØƛ̐ ŨĺƀŰŎŬęØŅĤƤăŎŹĠăŬėƀŅ ƕØƛŰŹŎŬØĤŰăłŎŅăƛ̐ ėŎŬŹĠăĤŬĺŎõØĺ õĠĤĺûŬăŅ̵ ŰĠŎŰŨĤŹØĺŰ̖ ̱ §ĠăłŎŰŹŬăƕØŬûĤŅęŹĠĤŅęĤŰ ķŅŎƕĤŅęŹĠØŹR̵ łłØķĤŅęØŅ ĤłŨØõŹ̲̐ ŰØƛŰnØĺĤØŬăĤŰăŅûŎŬė̐ ăƚăõƀŹĤƔăûĤŬăõŹŎŬėŎŬ'®̵ Ű ûØŅõăłØŬØŹĠŎŅ̖ ̱ ŅûăƔăŅ łŎŬăŬăƕØŬûĤŅęØŅûĤŅŰŨĤŬĤŅę ØŅûłŎŹĤƔØŹĤŅęĤŰķŅŎƕĤŅęŹĠØŹ ŹĠăŬăØŬăŨăŎŨĺăƕĠŎØŬăĴƀŰŹ ØŰŨØŰŰĤŎŅØŹăØŰRØł̐ ƕŎŬķĤŅę ŹŎƕØŬûŰŹĠĤŰõŎłłŎŅęŎØĺ̖ RŹ̵ Ű ŹŬƀĺƛŰŎłăŹĠĤŅęŰŨăõĤØĺØŅûR̵ ł ăƚõĤŹăûØŅûęŬØŹăėƀĺŹĠØŹRęŎŹŹŎ ăƚŨăŬĤăŅõăĤŹ̖̲ ŬăĤŰăŅûŎŬė̐ ØŰăŅĤŎŬ̐ ĠØŰòăăŅ ĤŅƔŎĺƔăûƕĤŹĠŹĠăûØŅõăłØŬØŹĠŎŅ ŰĤŅõăĠăŬėŬăŰĠłØŅƛăØŬ̖ Ġă ĤŅĤŹĤØĺĺƛØŨŨĺĤăûŹŎŹĠăăƚăõƀŹĤƔă òŎØŬûėŎŬĤŅŹăŬƔĤăƕŨŬØõŹĤõă̐ òƀŹėăĺĺ ĤŅĺŎƔăƕĤŹĠŹĠăõØƀŰăØŅû̱ ĴƀłŨăû ĤŅėăăŹƱŬŰŹ̲̐ ŰĠăŰØƛŰ̖ ŬăĤŰăŅûŎŬėėŎĺĺŎƕŰØĺŎŅęĺĤŅă Ŏė'®ƤŹăõŰƕĠŎĠØƔăòăăŅ ûØŅõĤŅęƀŨØŰŹŎŬłėŎŬnĤŬØõĺă qăŹƕŎŬķ'ØŅõănØŬØŹĠŎŅŰŰĤŅõă ˙˗˘˜̖ 1ƔăŬƛDăòŬƀØŬƛ̐ ŬŎƀęĠĺƛ˝˗˗ ŰŨăŅûŹĠăŅĤęĠŹĤŅnŎŅŹăƤƀłØNØĺĺ̦ ƔĤŬŹƀØĺĺƛûƀŬĤŅęŹĠăŨØŅûăłĤõ̧ ̱ ûØŅõĤŅęėŎŬŹĠăķĤûŰƕĠŎõØŅ̵ Ź̖̲ §ĠăăƔăŅŹĤŅõĺƀûăŰØ̱ cĤûûŎăû !ØŬŨăŹ̲ ŎŨăŅĤŅęõăŬăłŎŅƛ̐ ŰŹŎŬĤăŰ ŎėĤŅŰŨĤŬØŹĤŎŅėŬŎłØûƛ!ĠĤĺûŬăŅ̵ Ű ŨØŹĤăŅŹŰØŅûėØłĤĺĤăŰ̐ ĺĤƔă ăŅŹăŬŹØĤŅłăŅŹ̐ ØŅØƀõŹĤŎŅ̐ ŰƀŅŬĤŰă yoga and more. Though fundraising ăƫŎŬŹŰŹØķăŨĺØõăŹĠŬŎƀęĠŎƀŹ ŹĠăƛăØŬ̐ ŹĠăòĤęŨƀŰĠĤŰûƀŬĤŅę̱ nĤŬØõĺăÃăăķ̲ ĺăØûĤŅęƀŨŹŎŹĠă
EVEN MORE REWARDING AND INSPIRING AND MOTIVATING IS KNOWING THAT THERE ARE PEOPLE WHO ARE JUST AS PASSIONATE AS I AM, WORKING TOWARDS THIS COMMON GOAL. MALIA PREISENDORF, SDSU DANCE MARATHON’S EXECUTIVE DIRECTOR
12 HEALTHY KIDS MAGAZINE WINTER 2024
COMMUNITY Calendar Upcoming events that support Rady Children’s
event and at the event itself. Since 2015, SDSU has raised more than $2.2 million for Rady Children’s. Newer to the dance marathon õĤŬõƀĤŹĤŰ®'̖ §Ġă§ŎŬăŬŎŰ̵ ƱŬŰŹ event took place virtually in 2020. They followed SDSU’s lead òăėŎŬăƱŅûĤŅęŰƀõõăŰŰƕĤŹĠØ ŰŹŬĤŅęŎėŅŎŅ̪ ûØŅõăėƀŅûŬØĤŰăŬŰ ŹĠØŹŰŹĤĺĺòăŅăƱŹØûƛ!ĠĤĺûŬăŅ̵ Ű via Children’s Miracle Network Hospitals. In 2023, students hosted a pickleball tournament as their łØĤŅėƀŅûŬØĤŰăŬØŅûØŬăŨĺØŅŅĤŅęØ õØłŨƀŰ̪ ƕĤûăŹØĺăŅŹŰĠŎƕėŎŬ˙˗˙˛ ƕĤŹĠØûƛŎõķŰŹØŬŰØŰŹĠăĴƀûęăŰ̖ EVEN A DOLLAR GOES A LONG WAY, SO KNOWING THAT WE’RE RAISING THOUSANDS REALLY WARMS MY HEART. ISABELLA SZLUK, USD DANCE MARATHON’S EXECUTIVE DIRECTOR
115TH ANNIVERSARY CHARITY BALL Take part in
JERSEY MIKE’S SUBS DAY OF GIVING Each March, Jersey Mike’s
FEB. 13
MARCH
San Diego’s oldest and grandest philanthropic tradition, the Charity Ball, and support Rady Children’s. This year’s Starry Night-themed gala at Hotel del Coronado will include dinner, dancing and entertainment.
Subs raises money for charitable causes. In San Diego County, that means Rady Children’s. The monthlong donation drive culminates with Jersey Mike’s annual Day of Giving, when 100 percent of sales—not just profits—from the 30 San Diego locations are donated to the Hospital.
The USD Dance Marathon’s executive director, Isabella
Szluk, also a senior, credits her ĤŅƔŎĺƔăłăŅŹėŎŬĤęŅĤŹĤŅęĠăŬ ŨØŰŰĤŎŅŹŎęĤƔăòØõķ̖ eĤķăłØŅƛ participants, she faced health õĠØĺĺăŅęăŰØŰØõĠĤĺûØŅûķŅŎƕŰ ƱŬŰŹĠØŅûØòŎƀŹŹĠăŰŹŬƀęęĺăŰ pediatric hospital patients face. ̱ RŹ̵ ŰŰŎØłØƤĤŅęķŅŎƕĤŅęŹĠØŹƕă õØŅłØķăŰƀõĠØòĤęĤłŨØõŹ̖ 1ƔăŅØ ûŎĺĺØŬęŎăŰØĺŎŅęƕØƛ̐ ŰŎķŅŎƕĤŅę ŹĠØŹƕă̵ ŬăŬØĤŰĤŅęŹĠŎƀŰØŅûŰŬăØĺĺƛ warms my heart,” she says. “I have such a personal connection to it, òƀŹŅŎŹăƔăŬƛŎŹĠăŬõŎĺĺăęăŰŹƀûăŅŹ does, and the fact that we have a team of people who do it out of the kindness of their heart, because they care about kids, is the most ØłØƤĤŅęŹĠĤŅęĤŅŹĠăƕŎŬĺû̖̲ Do you know a student, teacher or administrator who would like ŹŎòŬĤŅę'ØŅõănØŬØŹĠŎŅŹŎŹĠăĤŬ õØłŨƀŰ̗ 1łØĤĺėƀŅûŬØĤŰă·ŬõĠŰû̖ ŎŬęŹŎęăŹŰŹØŬŹăû̖
Proceeds from the event will benefit the
Hospital’s palliative care program, which provides compassionate long-term care to children facing terminal illnesses and support services for their families. The program has served more than 700 patients and families since its start in 2010.
FOR MORE WAYS TO SUPPORT RADY CHILDREN’S ALL YEAR LONG, VISIT RADYFOUNDATION.COM/ EVENTS
WINTER 2024 HEALTHY KIDS MAGAZINE 13
HEAR
HEAR
RADY CHILDREN’S TURNS THE SOUND UP FOR KIDS WITH HEARING LOSS there are many causes of hearing loss in infants and children, there are also degrees of hearing loss. Assessing the cause and the severity is integral to the treatment plan. “The most common cause of hearing loss in children is genetic—it can be responsible for as much as 40 to 50 percent. That’s why we have genetic counselors as part of our Comprehensive Hearing Assessment Team,” Dr. Carvalho explains. “Another common cause is congenital cytomegalovirus (CMV), a virus that is present in the mother during pregnancy. Around 20 percent of babies with CMV will have progressive hearing loss. If diagnosed early, this can be treated with antiviral medication.” As with many conditions, early intervention is key to preventing developmental delays and improving quality of life. Rady Children’s has implemented a process for all local birthing hospitals to do a targeted screening for CMV. “I don’t think there are many hospitals in California that do this as well as we do here in San Diego,” she continues. “But if you can diagnose these kids early, you can treat them early. This is the only type of hearing loss you can treat with medication, but you have to screen them before they’re 3 weeks old.” All newborns receive a hearing screening. If necessary, they are then referred for a CMV screening, as well as genetic testing. Hearing loss severity is also
Imagine a world without the typical sounds Ĵì ĴťăăďķīăðŒÐĮȰĴìÐă ķæìĴÐīďåāðÌĮĨă řðĊæș ďķīå ŒďīðĴÐĮďĊæÆďĉðĊæďĊĴìÐī Ìðďș ÆìďīķĮďåÌďæĮÅ īāðĊæșďīĴìÐÆďĉåďīĴďå æÐĊĴăÐăķăă ÅřȘ This is the reality for roughly four out of every 1,000 children in the United States born with hearing loss in one or both ears, according to the National Institute on Deafness and Other Communication Disorders. “I am in awe of our innate ability to hear; I am passionate about the delicate art of bringing a child’s ability to hear back to them,” says Daniela Carvalho, MD, a pediatric otolaryngologist, cochlear implant surgeon and director of the Hearing Program at Rady Children’s. Dr. Carvalho has been with the program since its inception in 2003 and is a leading expert in pediatric ear conditions and treatments, like cochlear implants and bone-anchored hearing aids. In fact, she was ĴìÐťīĮĴĮķīæÐďĊðĊw Ċ#ðÐæďĴďĨÐīåďīĉÅďĊÐȭ anchored hearing aid surgery on children and is ĴìÐďĊăřĨÐÌð ĴīðÆĮķīæÐďĊÆÐīĴðťÐÌðĊw Ċ#ðÐæď County to perform cochlear implants. “Our Hearing Program is by far the most comprehensive in California,” she adds. “As you can imagine, hearing loss comes with a lot of other concerns, such as speech and language delays, so we have to assess cognitive development in children with hearing loss. We are very proud of our cohesive team, which is comprised of audiologists, speech language pathologists, psychologists and social workers, a geneticist, education liaison and parent liaison.”
assessed to determine whether the child needs hearing aids or if they’re a candidate for cochlear implants.
Not all hearing loss sounds the same. Just as
14 HEALTHY KIDS MAGAZINE WINTER 2024
“With hearing loss, it is not ďĊÐĮðšÐťĴĮ all. Each child is unique. We tailor their assessment and their treatment ĴďĴìÐðīĮĨÐÆðťÆ needs.” DANIELA CARVALHO, MD, HEARING PROGRAM DIRECTOR
SIGNS & SYMPTOMS
Even if a newborn passes a hearing screening, they can still show signs of hearing loss later on. According to the Centers for Disease Control and Prevention, these are the signs to look for:
YOUNG CHILDREN Speech is delayed
BABIES Does not startle at loud noises Does not turn to the source of a sound after 6 months of age Does not say single words, such as “dada” or “mama” by 1 year of age Turns head when he or she sees you but not if you only call out his or her name Seems to hear some sounds but not others
Speech is not clear Does not follow directions Often says, “Huh?” Turns the TV volume up too high
WINTER 2024 HEALTHY KIDS MAGAZINE 15
BY CHRISTINA ORLOVSKY
A star is born with the help of cochlear implants MUSIC s ear
16 HEALTHY KIDS MAGAZINE WINTER 2024
B Before Hayden Chen was born, his father, Chi- Yuan Chen, the principal viola of the San Diego Symphony, made sure his son was surrounded by music. Chi-Yuan dreamed of passing down ĴďìðĮťīĮĴÅďīĊĴìÐå ĉðăřȸĮĨ ĮĮðďĊåďīĉķĮðÆș ĮďðĴÆ ĉÐ ĮĪķðĴÐ ĮìďÆāåďīĴìÐ ìÐĊå ĉðăř Ĵì Ĵ> řÌÐĊœ ĮÅďīĊœðĴììÐ īðĊæăďĮĮȘ
ȵ> řÌÐĊĨ ĮĮÐÌĴìÐĊÐœÅďīĊìÐ īðĊæĴÐĮĴș ĊÌœÐĊÐŒÐīÐŘĨÐÆĴÐÌ ĊřĴìðĊæÌðååÐīÐĊĴ Ĵďì ĨĨÐĊȰìÐĮÐÐĉÐÌăðāÐ ì ĨĨřșìÐ ăĴìřș Ċďīĉ ăÅ Åřșȶ ìðȭķ ĊĮ řĮȘȵ ķĴĴìÐĊĉř œðåÐș>ĮðĊȭÐÐșĮĴ īĴÐÌĴďĊďĴðÆÐĮďĉÐĴìðĊæ ÅĊďīĉ ăœìÐĊìÐœ Į īďķĊÌǣĉďĊĴìĮďăÌȘ >ÐœďķăÌĊȸĴĴķīĊìðĮìÐ ÌďīīÐ ÆĴðĊ Ċřœ řĴď ăďķÌĊďðĮÐȘwďĉÐĴðĉÐĮìðĮĴďřĮœďķăÌÌīďĨ ďĊĴìÐŦďďī ĊÌìÐœďķăÌì ŒÐĊďīÐ ÆĴðďĊȘȶ }ìÐå ĉðăřĉ ÌÐ Ċ ĨĨďðĊĴĉÐĊĴœðĴì> řÌÐĊȸĮ ĨÐÌð ĴīðÆð ĊȘ ȵĴĴìÐ ĨĨďðĊĴĉÐĊĴșĴìÐÌďÆĴďīĴìīÐœ ìÐ Œř ĨìďĊÐÅďďāďĊĴìÐŦďďīȘ> řÌÐĊÌðÌĊȸĴÐŒÐĊ ÅăðĊāșȶìðĮÌ ÌÆďĊĴðĊķÐĮȘȵ}ì ĴȸĮœìÐĊœÐ āĊÐœĮďĉÐĴìðĊæœ ĮīÐ ăăřœīďĊæȘȶ ĴǤĉďĊĴìĮďăÌș> řÌÐĊŒðĮðĴÐÌ Ċ ķÌðďăďæðĮĴ œìďÌÐăðŒÐīÐÌĴìÐÌÐŒ ĮĴ ĴðĊæĊÐœĮĴì ĴìÐ œ ĮÌÐ åȘ ȵ}ìÐĉďĉÐĊĴœÐåďķĊÌďķĴșðĴœ ĮăðāÐĴìÐ ÐĊĴðīÐœďīăÌì ÌÆďăă ĨĮÐÌȘÐĴīķăřÆďķăÌĊȸĴ ÅÐăðÐŒÐðĴÅÐÆ ķĮÐĊďďĊÐðĊÐðĴìÐīďåďķī å ĉðăðÐĮì Ì ĊřìðĮĴďīřďåìÐ īðĊæăďĮĮ ĊÌ œÐÌďĊȸĴāĊďœ ĊřďĊÐœðĴììÐ īðĊæăďĮĮďī Ċř ďĴìÐīìÐ īðĊæÌðĮ ÅðăðĴřșȶ ìðȭķ ĊĮ řĮȘȵAĴ œ ĮÐĮĨÐÆð ăăřì īÌåďīĉÐ Į ĉķĮðÆð ĊȰA īÐ ăăřœ ĊĴÐÌìðĉĴď ĨĨīÐÆð ĴÐĉķĮðÆȘAĴĴďďā ķĮ ăďĊæĴðĉÐĴď ÆÆÐĨĴðĴșÅķĴåďīĴķĊ ĴÐăřșœÐ ì Ì ÆÆÐĮĮĴďÌďÆĴďīĮœìďāÐĨĴķĮŒÐīřœÐăă ðĊåďīĉÐÌȘÐăÐ īĊÐÌĴì ĴœÐì ÌďĨĴðďĊĮȘȶ
WINTER 2024 HEALTHY KIDS MAGAZINE 17
EXPLORING COCHLEAR CANDIDACY The Chens’ next step was to uncover the root of Hayden’s hearing loss in order to determine the appropriate intervention. They went back to their native Taiwan to see specialists and did more tests in San Diego with their doctors at Rady Children’s. They learned that Hayden’s hearing loss was related to the connexin 26 genetic mutation, meaning it was inherited (see sidebar). This discovery set the next steps in motion. Knowing the cause of Hayden’s hearing loss— and the potential for him to be a candidate for cochlear implant surgery—the family was referred to Daniela Carvalho, MD, director of the Rady Children’s Hearing Program, a pediatric otolaryngologist and cochlear implant surgeon and a professor in the Department of Surgery at UC San Diego. “Once we knew he could possibly have the surgery, we were more hopeful—we wanted him to at least be able to hear something,” Chi- Yuan says. > řÌÐĊœ ĮťĴĴÐÌåďīìÐ īðĊæ ðÌĮ ĴǤĉďĊĴìĮș which he wore while he continued to undergo additional tests. “He had to go through all these tests and treatments to determine that he had profound hearing loss, but we were so lucky to be at Rady Children’s. Everyone was so knowledgeable, and they don’t just care about the medical needs of their patients. They care about how he feels. It’s amazing how many patients they have, yet they can treat everyone like an individual with such personal care,” he continues. “When we met with Dr. Carvalho, we were very fortunate to learn that he was a good candidate for cochlear implants. We were even more fortunate to work with Dr. Carvalho. Not only is she one of the premier surgeons doing bilateral
implants (both ears at the same time), which no one could do in Taiwan, but she also explained everything thoroughly and treated us with such great empathy, like we were her relatives.” While not all patients are candidates for cochlear implants due to their neuro pathways, Hayden was one of the lucky ones.
TURNING UP THE VOLUME
At 1 year old, Hayden underwent implantation in both ears. “With Hayden, we tried to get him implanted as soon as possible,” explains Dr. Carvalho. “When they’re implanted as babies, they don’t know any difference. Families sometimes even call the implants their ‘ears.’ Hayden was implanted really young, and he’s done amazingly well.” One month after the surgery, Hayden’s implants were activated. It was a stressful month of wait-and-see for the Chen family. “Over that month, you don’t know if the surgery was successful,” Chi-Yuan recalls. “It was a scary time. We still didn’t know if after all that, he would even be able to hear.”
But when they knew, they knew.
18 HEALTHY KIDS MAGAZINE WINTER 2024
THE GENETIC CONNECTION
Hayden Chen’s hearing loss may have come as a surprise to his family, especially because neither of his parents nor other family members had any hearing loss. However, the majority of hearing-impaired children are born to hearing parents. The genetic condition Hayden had is actually quite common. Connexin 26, a protein in the GJB2 gene, is responsible for allowing cells to communicate with each other. Without enough of this protein, the levels of potassium in the cochlea in the inner ear can become too high; this can lead to hearing loss. Mutations of Connexin 26 are the most common cause of hearing loss in newborns, resulting in as many as 50 percent of all congenital hearing loss. This is not the only genetic cause. According to the Centers for Disease Control and Prevention, 50 percent or more instances of hearing loss in newborns is genetic, while 25 percent or more hearing loss is environmental—or due to infections in the mother while the baby is in utero or complications after birth. The CDC states that about 70 percent of genetic mutations that cause hearing loss are what’s called non-syndromic, meaning they don’t come with
any other symptoms—like in Hayden’s case. The remaining 30 percent of genetic mutations are part of a syndrome that has other symptoms, like blindness, for example. The only way to determine if a child’s hearing loss is due to a genetic mutation is to do genetic testing early on. Rady ìðăÌīÐĊȸĮďååÐīĮĴìÐÅÐĊÐťĴ of genetic testing as part of its comprehensive hearing program. The tests must wait until the child is born—they cannot be done in utero. “Some parents are using 23andMe and other in-home genetic testing to test for genes they know to be responsible for hearing loss. If both parents are positive for certain genes, you know the baby will have a 25 percent chance of having hearing loss,” says Dr. Carvalho. Still, while genetic testing has come a long way, there’s still much more to discover. “We have genetic panels for 200 genes that we can test for hearing loss,” Dr. Carvalho adds. “But there are thousands more we just don’t know about yet.”
WINTER 2024 HEALTHY KIDS MAGAZINE 19
HEALTHY HABITS
WHO IS A COCHLEAR IMPLANT CANDIDATE?
While children with mild to moderate hearing ăďĮĮĉ řÅÐĊÐťĴåīďĉ hearing aids, the ðĊĴÐīŒÐĊĴðďĊåďīĴìďĮÐ œðĴìĮÐŒÐīÐĴďĨīďåďķĊÌ hearing loss is a bit more complex. Thanks to Rady Children’s exceptional Cochlear Implant Program and ever-evolving technology, more ÆìðăÌīÐĊīÐÆÐðŒÐĴìÐæðåĴ ďåìÐ īðĊæ Ĵ ĊÐ īăř age. An alternative to hearing aids, cochlear ðĉĨă ĊĴĮÌÐăðŒÐīĮďķĊÌ ðĊåďīĉ ĴðďĊÌðīÐÆĴăřĴď ĴìÐ ķÌðĴďīřĊÐīŒÐȘ ȵZķī ďÆìăÐ īAĉĨă ĊĴ Program is so comprehensive that the tool we developed Ĵď ĮĮÐĮĮĨÐďĨăÐåďī Æ ĊÌðÌ ÆřåďīðĉĨă ĊĴĮ ðĮœì ĴðĮķĮÐÌÅř ăðåďīĊð ìðăÌīÐĊȸĮ Services centers. It takes into consideration ăăĴìÐĊÐÐÌĮďåĴìÐ child and how we can ÅÐĮĴ ĮĮÐĮĮĴìÐăÐŒÐăďå hearing loss to get the ÅÐĮĴďķĴÆďĉÐĮœðĴìĴìÐ implant,” Dr. Carvalho explains.
To determine candidacy, patients see a ĉķăĴðÌðĮÆðĨăðĊ īřĴÐ ĉ ďåĮĨÐÆð ăðĮĴĮďĊĴìÐ >}ĴÐ ĉďŒÐī åďķīȭ ìďķīŒðĮðĴȘ ÅðÐĮ Į řďķĊæ ĮǥĉďĊĴìĮÆ Ċ receive implants. ȵÐ ðĉĴďåďăăďœĴìÐ æķðÌÐăðĊÐĮșœìðÆìĮ ř œÐĮìďķăÌĮÆīÐÐĊÅřǠ month, diagnose by 3 months and intervene ÅřǥĉďĊĴìĮȰœìÐĴìÐī Ĵì ĴðĮťĴĴðĊæĴìÐĉœðĴì hearing aids, connecting ĴìÐĉœðĴìīÐĮďķīÆÐĮďī implanting them,” Dr. īŒ ăìďÆďĊĴðĊķÐĮȘ ȵ}ìÐĮďďĊÐīřďķÆ ĊæðŒÐ Joint Commission ďĊAĊå ĊĴ>Ð īðĊæ āðÌĮ ÆÆÐĮĮĴďĮďķĊÌȰ æďďÌĮďķĊÌȰĴìÐÅÐĴĴÐī ðĴðĮåďīĴìÐðīÅī ðĊĮĴď develop normal speech ĊÌă Ċæķ æÐĴì ĴðĮďĊ par with their peers. The ăďĊæÐīřďķÌÐă ř ÆÆÐĮĮ ĴďĮďķĊÌșĴìÐĉďīÐ delayed they’ll be. That’s why we’re adamant ÅďķĴĉ āðĊæĮķīÐĴìÐĮÐ kids get what they need as soon as possible. It Æ ĊĴīķăřĉ āÐ ìķæÐ ÌðååÐīÐĊÆÐȘȶ
20 HEALTHY KIDS MAGAZINE WINTER 2024
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 interactive PDF creator