Back in Action - An accident could have cost Ella her arm. Rady Children's saved it.
WINTER 2023
Back
in Action
An accident could have cost Ella her arm. Rady Children’s saved it.
RAISING KIND KIDS BIKE SAFETY TIPS HEART HEALTH IN SCHOOLS PLUS
A PUBLICATION BY
Light
the Way
It’s not too late to bring joy to kids in the hospital. Donate today. Rady Children ’ s Annual Holiday Giving Campaign
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THANKS TO OUR CARING NETWORK!
To a Year Filled with Possibilities hope this issue finds you looking forward to a bright new year, surrounded by friends and family. As I reflect on 2022, I am grateful for the trust our community puts in Rady Children’s Hospital to care for kids in our community and beyond. Did you know that the team at Rady Children’s cared for more than 300,000 children in 2022? Each interaction with a child and their family is an opportunity for us to make a difference—to give hope, light and the gift of a healthier future. Inside this issue of Healthy Kids, we’ll explore bicycle safety tips, an initiative to make our schools safer through cardiac arrest preparedness, raising kind kids and how we’re fighting long COVID-19. We also honor a shining star in genomics research and share an awe-inspiring story of true courage from a young patient named Ella and her incredible care team at Rady Children’s. As always, you are the driving force behind everything we do at Rady Children’s. You, our incredible supporters, are a big reason why the holiday season was made brighter and merrier for kids who had to spend the holidays in the Hospital. From our Light the Way fundraising campaign to the annual Toy Drive, Ice Rink and Giveathon, our partnership with you continues to illuminate new possibilities. Thank you for your tireless support. As we head into 2023, we have so many reasons to feel optimistic and inspired. I am looking forward to a year filled with possibilities. Here’s to hope and healing in the new year. I
@radychildrens Teens rock at Rady
Children’s! The Hospital has a special weekly program for teens with type 1 diabetes that provides education, intervention and support.
@teamrady Canine therapy volunteer Lucy shows her support for the home team while she brings joy and smiles to patients and staff at Rady Children’s.
STEPHEN JENNINGS Chief External Affairs Officer and Senior Vice President Rady Children’s Executive Director Rady Children’s Hospital Foundation
@radychildrensicerink It doesn’t get much cooler than this! The skate heroes at Rady Children’s Ice Rink at Liberty Station help new skaters learn the ropes. The ice rink is open through January 8.
WINTER 2023 HEALTHY KIDS MAGAZINE 1
3020 Children’s Way San Diego, CA 92123 858-576-1700 RCHSD.org
Stephen Jennings Chief External Affairs Officer and Senior Vice President, Rady Children’s Hospital and Executive Director, Rady Children’s Hospital Foundation
Rady Children’s Hospital Auxiliary has been supporting Rady Children’s since 1953 - one full year before the Hospital opened its doors. Today, nearly 1,100 members across 19 units actively advocate for the health and well-being of children, increasing community awareness of Rady Children’s and fundraising. JOIN THE RADY CHILDREN’S HOSPITAL AUXILIARY
President and Chief Executive Officer Patrick Frias, MD President and CEO, Rady Children’s Institute for Genomic Medicine Stephen Kingsmore, MD, DSc Senior Vice President and Chief Operating Officer Chief Medical Officer Gail Knight, MD, MMM Physician-in-Chief and Chief Scientific Officer Gabriel G. Haddad, MD Senior Vice President and Chief Financial Officer James Uli Senior Vice President and Chief Administrative Officer Jill Strickland Nicholas Holmes, MD, MBA Senior Vice President and Senior Vice President, Care Redesign and Managed Care and Chief Operating Officer, Rady Children’s Specialists of San Diego Charles B. Davis, MD Senior Vice President, Executive Director, Rady Children’s Specialists of San Diego and President, Children’s Specialists of San Diego Robin H. Steinhorn, MD
Vice President of Patient Services and Chief Nursing Officer Mary Fagan, PhD, RN, NEA-BC Vice President, Strategic Marketing Irena Boostani Vice President, Government Affairs Clara Evans Vice President, Foundation Fundraising Jean Ford Keane Chair, Rady Children’s Hospital and Health Center Board of Trustees Paul J. Hering, CPCU Chair, Rady Children’s Hospital Foundation
Board of Trustees Douglas M. Arthur Chair, Rady Children’s Institute for Genomic Medicine David F. Hale
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Contributing Writers Jennifer McEntee Megan Matthew Christina Orlovsky Contributing Designers Analia Pribyl Rebecca Wilson Contributing Photographer Paul Body
Publisher and Chief Content Officer Troy Johnson Custom Content Editor Sarah Sapeda Art Director Samantha Lacy Contributing Copy Editor Kelly Davis
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 is the region’s only designated pediatric trauma center. Rady Children’s is a nonprofit organization that relies on donations to support its mission. For more information, visit www.rchsd.org. Healthy Kids magazine includes third-party content, advertising and/or website hyperlinks from outside businesses and organizations. Their placement in this publication is not an endorsement for these businesses or organizations or their products, materials, services or resources, nor does it reflect the views/policies of Rady Children’s Hospital-San Diego. Healthy Kids magazine and its affiliates shall not be liable to any party as a result of any information, services or resources made available through this publication. Rady Children’s complies with applicable state and federal civil rights and nondiscrimination laws. See www.rchsd. org/nondiscrimination for more information. Language assistance services are available to patients and visitors free of charge. Call 858-966-4096 / TDD: 858-627-3002 for more information.
Learn more about joining the Auxiliary or how to get involved:
radyfoundation.org/auxiliary
WINTER
HEALTHY HABITS Emergency room autism specialists, heart smart schools, an educational activity you can do at home and more 05 PLASTICS IN PEDIATRICS An inside look at the Division of Plastic Surgery at Rady Children’s, plus how the Hospital is helping change the lives of kids from around the country 14 but reconstructive surgery and occupational therapy saved it 17 IN GOOD HANDS An ATV accident could have cost Ella her arm,
INSIDE RADY CHILDREN’S
HOPE AND GRACE Genetic testing couldn’t explain 5-year-old Grace Holbrook’s rare double diagnosis, but it did give her family hope 26
29
STAFF SPOTLIGHT Steven Kingsmore, MD, the renowned president and
CEO of the Institute for Genomic Medicine has been named Rady Children’s inaugural Endowed Chair in Pediatric Genomic Medicine
32
PAY IT FORWARD The grateful father of a patient at the Helen
Bernardy Center for Medically Fragile Children explains why it’s important to give back
Your investment in future generations will see us through unimaginable discoveries, cures, vaccines and prevention. Join our efforts and name Rady your IRA or other retirement account. It is simple, tax smart and makes a lasting impact on childhood health.
CREATE THE FUTURE SHE DESERVES
2
3
1
Without having to part with your money today, you know that you are making a gift larger than you thought possible.
Download the form from your IRA provider’s website
Choose a percentage of the account you wish to gift to Rady Children’s
Sign and return the form to your administrator
To learn about additional ways to make a gift through your will, trust or estate plan, visit giftplanning.radyfoundation.org or call 858-966-5804 + THANK YOU FOR INVESTING IN RADY CHILDREN’S AND HELPING THE CHILDREN OF TOMORROW.
HEALTHY HABITS
A Resolution to Keep It’s that time again to start planning for the new year and thinking of what we’re going to do differently. This year, let’s resolve to focus on the important things in life, like health. In this issue, we’ve included plenty of tips to keep your family healthy—physically, mentally and emotionally. We’ve also included some specific ways Rady Children’s is working to improve the health of San Diego’s kids, like staffing autism experts in the emergency department and ensuring local schools are prepared for cardiac emergencies. New Year’s resolutions aren’t always the easiest to stick to, but with Rady Children’s as your partner, your family’s health will be top priority in 2023 and beyond.
HEALTHY HABITS
Telemedicine was virtually unheard of before the pandemic but has since become an essential resource for patients and parents. While the restrictions that spurred the rise in telemedicine visits have relaxed, their popularity has not wavered. Though video visits aren’t appropriate in every situation, it’s apparent that this convenient form of care has made a lasting impression in the health care community. VIRTUAL HEALTH Telemedicine is Trending at Rady Children’s
Video visits can be used for primary care, specialty care, urgent care, behavioral health, developmental services and more. Your child’s doctor will have access to their records at Rady Children’s and will be able to provide the same top-quality care that you would expect at an in-person visit. Primary physicians and specialists may be able to review symptoms using your smart device, diagnose and treat new or recurring medical conditions and minor injuries, answer questions, order lab tests and imaging, prescribe medications and discuss treatment plans. Note that some types of visits are better suited to telehealth than others. For instance, adolescents seeing a psychologist or psychiatrist may feel more at ease accessing therapy from home. However, some conditions must be tested for and diagnosed in-person, such as ear infections and strep throat. It’s also important to build a relationship with your child’s pediatrician, so they may recommend in-person visits. WHAT CAN BE TREATED VIA TELEHEALTH
The Benefits of Telemedicine
Video visits save time and travel costs Telehealth visits reduce exposure to germs Patients can refill medications and be prescribed new ones without an in-person visit Patients outside the San Diego area have increased access
THOUGH PROTECTING PEOPLE DURING THE PANDEMIC was the most pressing priority, telemedicine has many other benefits. Your child’s physician or specialist can address a variety of medical issues, treat chronic conditions and follow up after an in-person visit Video visits may help ease the minds of anxious patients by allowing them to receive care in their own home
6 HEALTHY KIDS MAGAZINE WINTER 2023
SERVICES Autism in the ER Rady Children’s offers specialty help in emergency health S
ome 21,500 children with autism visit Rady Children’s each year, often visiting the emergency department (ED) for a range of medical and behavioral concerns. Some of those children get to meet Abbey Hye, a behavioral specialist with Rady Children’s Autism
AT RADY CHILDREN’S, A MYCHART ACCOUNT IS REQUIRED FOR VIDEO VISITS. Ensure that your username and password are up to date before your visit. You may receive a call from clinic staff ahead of the appointment with further instructions, though this may not be necessary. Before your child’s appointment: Write down any questions you may have for your provider Have a list of your child’s symptoms and how long they have occurred Prepare a list of your child’s current medications and dosage (you will enter them in the pre-visit check-in section, EZ Arrival) Gather any test results pertaining to the appointment that were completed in a non-Rady Children’s facility If requested by your clinical team before your visit, obtain vital signs, such as height, weight, temperature or heart rate If requested by your clinical team, send photos via a MyChart message How to Prepare for Your Video Visit
Discovery Institute. Two days a week, she’s stationed in the Sam S. and Rose Stein Emergency Care Center at Rady Children’s to help pediatric patients with autism, their families and health care staff work together for a successful ED experience. Hye is there to help wherever she’s needed, from the waiting lounge to the exam room to patient discharge. “We can go anywhere they need to go,” she says. Autism is a complex neurodevelopmental condition that affects people differently but often includes difficulty with communication and social interaction and restricted or repetitive patterns of behavior, thoughts, interests and activities. Children with autism can become especially anxious or agitated in situations where their senses are overloaded—like a visit to a noisy, brightly lit, bustling ED. Even a relatively routine procedure, like placing an IV, can create a stressful situation for the patient, parent and physician alike, Hye says. “We have to determine what strategies will help make the experience less scary and avoid challenging behaviors,” Hye says. “We have to keep the patient and the staff safe.” Since late 2019, Hye and her colleagues have used a three- pronged approach to improve care for kids with autism. The Autism Friendly Health Safety Initiative includes a parent questionnaire, an autism-tailored toolkit and training for hospital staff. The questionnaire helps the health care team identify if a child with autism has any specific sensory or communication needs. Parents are asked what makes their child uncomfortable—for instance, too many people in a room or certain smells or sounds— and how they might express that distress. “The rationale behind this questionnaire is that we know that parents know their child best,” Hye says. “So parents should not have reservations about sharing and advocating for your child.” The questionnaire also asks parents what typically calms their child in stressful situations. Music? Fidget toys or bubbles? A written schedule? That’s where the toolkit comes in. It’s stocked with sensory items designed to soothe and motivate the child during their visit. Autism experts are in the ED 20 hours a week. Outside of those hours, the emergency staff can lean on what they’ve learned during their previous collaborations with the autism team. “We’re teaching staff in a busy environment, but it allows us to be proactive,” Hye says. Rady Children’s began offering greater support for patients on the autism spectrum in response to data showing that children with autism can have trouble accessing health care. A difficult doctor’s visit can mean escalating negative behaviors and canceled appointments. Doctors and nurses also need the confidence to care for children with autism. “This was inspired by the needs of patients and physicians,” Hye says. “I am so proud of what we’ve been able to provide for our families to better meet the needs of kids with autism.”
TIPS FOR A SUCCESSFUL VIDEO VISIT Block off time for the appointment. A parent or guardian is required if the patient is under 18 years old. Conduct the video visit in a well-lit room. Bright lighting should be in front of you, not behind you. Check your tech. Enable camera, microphone and speaker. Ensure they are working properly. Beware of background distractions. Keep your video visit space as quiet and private as possible.
WINTER 2023 HEALTHY KIDS MAGAZINE 7
HEALTHY HABITS
Kids should learn bike safety before they wheel out SAFETY Ready to Ride
HAND SIGNALS
TEACHING YOUR CHILD TO RIDE A BICYCLE is a great way for the whole family to get outside and get some exercise. As you demonstrate how to pedal and brake, it’s also important to emphasize the importance of bike safety. About 26,000 children go to emergency departments each year with biking-related head injuries, according to the American Academy of Pediatrics. Head injuries are the leading cause of death in bicycle crashes. Despite data that shows wearing a bike helmet can lower the number of deaths by 75 percent, only about 15 to 25 percent of children routinely wear their helmets. Data shows that wearing a bike helmet can lower the number of deaths by 75 PERCENT . In California, it’s the law. Minors under the age of 18 must wear a properly fitted bike helmet while cycling on streets, sidewalks and bike paths. Are you taking your young child for a ride around the block as a passenger on your bike? They need a helmet then, too. Bike safety includes regularly ensuring all equipment from tires and brakes to handlebars are in good working
condition. While kids are always growing, it’s safest if their bikes are just the right size, where they can reach the balls of both feet comfortably to the ground with both hands on the handlebars. Children also need to be taught the rules of the road, including that they shouldn’t ride in the street until they’re at least 10 years old and show good riding and safety skills. Kids on bikes should ride on the right side of the road in the same direction as traffic, follow all traffic signals and stop signs, use correct hand signals and look both ways before entering the street. Some bicycle collisions involving other vehicles can be avoided with greater visibility. Children’s bikes can be outfitted with reflectors and lights, and kids can dress in brightly colored clothes. Due to poor lighting, it can be dangerous for children to ride at dusk or after dark. Above all else, bicycle riders of all ages need to stay alert. Potholes, puddles, rocks and sewer grates can cause riders to tumble. Parked cars can pose a hazard when a door opens. And while it’s tempting to listen to music while on a bike ride, experts say kids should leave their earbuds at home so they can hear horns and other traffic noises.
STOP
LEFT TURN
RIGHT TURN (TWO OPTIONS)
COMMUNITY
Heart Safe Schools Rady Children’s and Project ADAM work to reduce cardiac arrest deaths
S
Safe School designation from Project ADAM. Project ADAM was founded in 1999 in honor of Adam Lemel, a 17-year-old Wisconsin student who collapsed and died
udden cardiac arrest is often a death sentence if it happens outside of a hospital. An estimated 90 percent of people whose heart stops beating unexpectedly at home or in public will die. But if bystanders
while playing basketball. Early defibrillation would have likely saved his life. Since Project ADAM’s start, affiliate programs have been credited with saving more than 200 lives. Rady Children’s became the 26th Project ADAM affiliate in mid-2020 and works with local schools to provide support and education for the program. Schools are required to have well-maintained AEDs on campus under California state law, but to become a Heart Safe School, the campus must have a response team and plan for reacting to sudden cardiac events after calling 911 and while waiting for paramedics to arrive. Dr. Rao says only a handful of schools in the San Diego Unified and Poway Unified school districts have earned a Heart Safe School designation, partly because many campuses were closed early in the pandemic, but they are working to get more schools involved. Dr. Rao and Anne Laymon, RN, Rady Children’s coordinator for Project ADAM, are reaching out to school nurses to raise awareness about the program. Parents and community members are also encouraged to advocate for their
‘‘
immediately intervene by performing cardiopulmonary resuscitation (CPR) or using an automated external defibrillator (AED), the chance of survival can double or even triple. Schools are a great place to start teaching the importance of a quick reaction to sudden cardiac arrest, and kids are especially adept at jumping into action, says Rohit Rao, MD, a pediatric cardiologist at Rady Children’s and medical director of the Hospital’s cardiothoracic intensive care unit and Pulmonary Hypertension Program. “You give them the education and a tool, and they’re fearless,” he says. “By educating our next generation in schools, we are effectively training and making them aware of the importance of cardiac arrest preparedness, so they don’t hesitate, they deploy.” Dr. Rao is also the medical director of Rady Children’s affiliation with Project ADAM, which equips schools around the country with the resources and education needed to respond to sudden cardiac arrest events on campus. That includes ensuring school employees have
By educating our next generation in schools, we are effectively training and making them aware of the IMPORTANCE OF CARDIAC ARREST PREPAREDNESS . –ROHIT RAO, MD, PEDIATRIC CARDIOLOGIST AT RADY CHILDREN’S
neighborhood schools’ involvement. “Let’s harness the power of community,” Dr. Rao says. “I would like every school in my community to be Heart Safe-certified.”
a plan to act quickly, are trained in CPR and have access to an AED, which can restore a heart’s normal rhythm. Schools that have proven their cardiac arrest preparedness can earn a Heart
WINTER 2023 HEALTHY KIDS MAGAZINE 9
HEALTHY HABITS
Seven Tips for Raising Kind Kids Practice what you preach. On an individual level, kindness brings meaning and satisfaction to life and encourages positive relationships, says Dr. Jenkins. Kindness puts others before self, elevating the entire group and sharing a sense of responsibility for the community. So be a role model and treat your child and others with kindness. If the home environment is filled with kindness and kids are treated with kindness, they are more likely to show that to others. Modeling kindness every day is important, Dr. Jenkins adds. Kids are always listening and will notice your behavior. Talk about feelings more. Discuss feelings and kindness at the dinner table. Helping kids understand their own feelings will help them empathize with others. So, sit down with your family at dinner and go around the table asking what everyone did that day that helped others or showed kindness. Make sure everyone in the family shares a story, even you! Notice when your child is kind and notice kindness in the world. If you grow up in a home that not only models compassion and kindness to others, but this virtue is also highly praised, noticed and commented on, it shows that it is valued in the family and the community, says Dr. Bird. Show kindness to yourself. Give yourself grace when you make a mistake and don’t use derogatory messages toward yourself. Help your child understand that mistakes are part of life. Use positive self-talk in front of your child. Also, make sure to take time and make space for yourself. Give yourself time to reflect on your feelings and recharge. This is an element of kindness that is often overlooked (and sometimes difficult to do). Dr. Bird mentions the oxygen mask on the plane example. Just as you must put on your own oxygen mask before helping others, be kind to yourself first so that you can be kind to others. Create kindness opportunities intentionally. These can be simple activities that you create to contribute back to your community. Help a neighbor, walk a friend’s dog, deliver a meal to someone who is sick or do a beach cleanup. This can be a small gesture but has big reward and is a great opportunity for kids to give back. Kindness can be contagious! Ensure your expectations are age appropriate. Let’s be honest, toddlers don’t have much empathy. If a toddler hits, it can be hard for them to understand why that is not OK, Dr. Jenkins says. Toddlers haven’t mastered emotional self-regulation yet. To help them, you might ask a toddler how that person might have felt after getting hit. School-aged children are better at understanding how their actions might make someone else feel. Make it a holiday or new year tradition! Around the holidays, there is a lot of consumerism and gift- giving. To offset this, it’s a great time of year to start doing small acts of kindness that are not monetarily based and put you in the holiday and new year spirit. And don’t stop once 2023 rolls around—do acts of kindness year-round!
PARENTING
Raising Kind Kiddos Lead by example and create opportunities for kindness A s parents, we want so many things for our children. We want them to be healthy. We want them to learn, to make friends and to live a fulfilled life. To experience joy and choose happiness. And perhaps most of all for them to be kind. Kind to others, kind to animals, kind to the earth, and (yes!) kind to themselves. But why? Why is kindness important for our kids? Willough Jenkins, MD, a child and adolescent psychiatrist at Rady Children’s and inpatient medical director of the hospital’s Child Adolescent Psychiatry Services, and Anne Bird, MD, medical program director of Behavioral Health Integration at Rady Children’s, explain that kindness is both an important virtue for society AND gives us as individuals big emotional return. It makes us feel better and helps with mental health. In fact, says Dr. Bird, there is a distinct correlation between kindness and lower stress levels and higher oxytocin (the feel-good hormone), as well as improved self-esteem, better self-confidence and reduced negative feelings. But can you teach kindness? Is it a learned virtue, or are you born with it? It turns out if we want kind kiddos we must understand its importance and be intentional. Here, Drs. Jenkins and Bird share their top recommendations on teaching kindness to kids (and yourself).
10 HEALTHY KIDS MAGAZINE WINTER 2023
AT HOME Shape Sweep
This activity from Alexa’s PLAYC makes learning shapes fun
the activity can be done using household items you likely already have. You’ll only need a broom, tape and paper. Lara Padrigon, a teacher at Alexa’s PLAYC, says the idea was to take something young children find stimulating, like play sweeping, and make it more academic by adding in aspects of shapes, sorting, direction and coordination. “Children like to play with things that they can just grab, and the broom is a very motivating item because they see parents use it,” she says. “Kids as early as 18 months love to help and with this they can learn to sweep and sort. And there’s a variety of ways that all build gross motor skills and hand-eye coordination.”
SHAPES ARE AN IMPORTANT PART of teaching children to navigate the world around them. Alexa’s Playful Learning Academy for Young Children makes learning shapes fun. The inclusive early childhood education program with locations on Rady Children’s campuses in San Diego and Murrieta caters to both children with autism spectrum disorder and typically developing children and focuses on play-based learning and teaching communication, cognitive and social skills in enjoyable ways. The experts at Alexa’s PLAYC have come up with a fun activity to help children learn shapes while also building up their gross motor skills. And perhaps the best part:
SHAPE SWEEP
Start by creating an outline of the shapes you want your child to identify on the floor with tape. Place crumbled up paper, pom poms or any other items you have around the house on the floor near the shape outlines. Call out the name of a shape and have your child sweep the items on the floor into the corresponding shape using a small dustpan brush or a child- size broom. This will keep your child engaged in the activity while also practicing their gross motor coordination. You can alter the activity to your child’s needs or preferences by having them identify different items (e.g., letters, numbers) or by incorporating a timer. You can even bring the fun outside by outlining the shapes with chalk on the cement.
WINTER 2023 HEALTHY KIDS MAGAZINE 11
HEALTHY HABITS
Does the helmet hurt the baby? Nope. A properly fitted COMMONLY ASKED QUESTIONS ?
helmet won’t put excessive pressure on your baby’s head or cause pain. How long does my child need to wear it? Over the first week, gradually build up wear to 23 hours per day. The child will wear the helmet for 23 hours a day, including during naps, for the remaining prescribed time period. How do you clean the helmet? Gently rinse the helmet in the sink and lightly scrub inside and out with a gentle soap. Avoid a strong flow of water as it can force water between the layers of foam and plastic. The best time to wash the helmet is at the beginning of each day’s 1-hour break so it has time to air dry.
TREATMENT
What Parents Should Know About Cranial Helmets
Do I need to cut my baby’s hair? Maybe. Thick hair can add bulk inside the helmet, cause improper pressure
H
23 hours a day after a gradual buildup during the first week. Most babies start with a 6-week prescription of wear. After the initial wear period, the baby’s head is remeasured. It’s also recommended that families work with a physical therapist to correct the underlying issue that led to the condition, such as tight muscles that cause the infant to look mostly in one direction or muscle weakness that can inhibit movement. “While helmets are a great in helping shape the child’s head, without the support of physical therapy, the root cause may not be addressed. In these cases, the child will never be able to fully reach their potential to interact with the world because the patient and family do not receive the support and education needed,” says Aparicio. “I urge families to not be afraid to ask their doctors more questions, whether it’s why their child’s head is flat or requesting a physical therapy referral, because it ultimately benefits the child and their quality of life.”
earing that your infant’s head shape is abnormal can be concerning to new parents but doesn’t necessarily need to be cause for alarm. Positional skull
deformities, called plagiocephaly, are very common in babies who spend a lot of time lying on their backs or looking to one side. The condition isn’t painful or disruptive and is usually treatable with a combination of cranial helmet use and physical therapy. Babies’ skull bones are flexible, which allows their brain to grow rapidly (it doubles in size during the first year), and helmets work to reshape those bones before they fuse. “Helmets are a non-painful tool utilized to help shape a baby’s head. Ideally, we can place the helmet on during a period of rapid head growth within the first year, preferably between the 4- and 6-month period,” says Sierra Aparicio, an inpatient physical therapist at Rady Children’s. To ensure your baby gets the most out of treatment, the cranial helmet should be worn
and increase heat inside the helmet. Talk to your doctor about whether a trim is needed.
What do I do about skin irritation? Pink and red marks are
common and should go away on their own in about an hour. Slight rashes are also common and can be treated with a small amount of diaper cream. If your child’s skin looks like it’s getting chafed or has blistered, contact your physical therapist.
12 HEALTHY KIDS MAGAZINE WINTER 2023
Strawberry- Banana Smoothie ON THE MENU
A SIMPLE STRAWBERRY-BANANA SMOOTHIE is always a crowd-pleaser at Rady Children’s. This frosty recipe was designed by the Food Service Department and Clinical Nutrition and tested amongst a number of different aged patients and staff. The kid-friendly treat can easily be translated to your home kitchen. It’s a great way to ease back into healthy eating after the holidays and add an antioxidant boost to a busy morning.
“The smoothie recipe was designed to be a healthy option for patients, parents and caregivers to get the nourishment they need in a fun way,” says Mary Beth Schlichtholz, director of food services. “The recipes are kid-tested and dietitian approved!”
STRAWBERRY- BANANA SMOOTHIE
Makes one 8-ounce serving
INGREDIENTS n 1 small banana n ½ cup frozen strawberries n 1 ounce vanilla yogurt n 1 ounce apple juice n 1 cup ice
INSTRUCTIONS
In a blender combine all ingredients blend until smooth. Serve cold.
WINTER 2023 HEALTHY KIDS MAGAZINE 13
OF PLASTIC S
PLASTICS IN PEDIATRICS
When you hear the term “plastic surgery,” you might think of purely cosmetic procedures. But the world of plastic and reconstructive surgery is so much more than that—especially when it comes to pediatrics.
BY CHRISTINA ORLOVSKY
14 HEALTHY KIDS MAGAZINE WINTER 2023
P SURGERY AT RADY CHILDREN’S Pediatric plastic surgeons use their medical magic to make life-changing differences in kids and teens with a wide range of craniofacial conditions, disorders and traumatic injuries.
trauma center, we also do a lot of trauma surgeries, both treating the actual trauma itself and assisting general surgeons,” Dr. Hinchcliff says. Under the leadership of Dr. Gosman, the Division of Plastic Surgery also places a high priority on research. In the area of cleft lip and palate surgery, Dr. Gosman continues to investigate new techniques, such as the use of bone graft alternatives for the early primary repair of alveolar clefts. She is also the principal investigator for an American Society of Maxillofacial Surgeons grant to evaluate new and safer imaging exams for children under age 5 who are being treated for cleft lip and palate. The division also trains the next generation of pediatric plastic surgeons through its fellowship program, which has successfully been integrated with its research endeavors. “We are a small division, but we play an interesting and interactive role in the hospital beyond the congenital work we do,” Dr. Hinchcliff adds. “We all have our primary interests and skillsets, and we leverage those to meet the needs of the Hospital and our patients.”
The Division of Plastic Surgery at Rady Children’s is internationally recognized for its expertise in treating complex craniofacial disorders, as well as functional problems with the jaw and airway. The highly experienced team performs more than 1,000 procedures a year and treats a range of conditions, including cleft lip and palate, vascular lesions, craniosynostosis (a congenital defect that prevents normal skull and brain growth), and disorders of the hand and upper extremities. The team also performs plastic surgery for the ears and nose, reconstructive surgery following the removal of cancerous tumors and corrective surgery for sleep apnea. Rady Children’s plastic surgery division includes four physicians: division chief Amanda Gosman, MD; Ralph E. Holmes, MD; Melissa Kanack, MD; and Kate Hinchcliff, MD. They are able to perform cleft lip, cleft palate and congenital facial surgeries, and can handle lumps, bumps and general plastic surgery cases. Dr. Hinchcliff is also trained in pediatric hand surgery and primarily
treats congenital hand differences and hand trauma. The division’s doctors are supported by two physician assistants and a number of nurses.
“While our mission is to treat as many congenital defects as we can— both craniofacial and hand—because Rady Children’s is a Level 1
The highly experienced team performs more than 1,000 procedures a year and treats a range of conditions, including cleft lip and palate, vascular lesions, craniosynostosis and disorders of the hand and upper extremities.
WINTER 2023 HEALTHY KIDS MAGAZINE 15
THE GIFT OF A Fresh Start
Birth defects do not discriminate and neither should the care to treat them. That’s the belief behind Fresh Start Surgical Gifts, a medical charity that transforms the lives of disadvantaged infants, children and teens with physical deformities caused by birth, accidents, abuse or disease through the gift of reconstructive surgery and related health care services.
Founded in 1991 by the late Dennis Nigro, MD, a San Diego plastic surgeon who was inspired by trips to remote areas to provide reconstructive surgeries to kids in need, Fresh Start embarked on a partnership with Rady Children’s in 2009 to create the Fresh Start Clinic at Rady Children’s, allowing the organization to
treat complex conditions and provide care more frequently. “Fresh Start is the safety net for children that are uninsured, underinsured or do not have the means to undergo a procedure that is being turned down by their insurance. This is because a lot of their conditions, such as port wine stains, scarring from abuse and others, are considered cosmetic,” explains Michelle Pius, chief development officer for Fresh Start. “We don’t charge for any of our services, and a lot of our surgeons, nurses, scrub techs and other clinic volunteers are Rady Children’s staff.” The Fresh Start clinic, located on the Rady Children’s campus, makes use of the Hospital’s operating rooms on weekends, when surgeries are not performed on Hospital patients. “We have a shared goal to make sure the kids are getting the same exceptional services they need, regardless of their ability to pay,” Puis explains. Fresh Start holds six two- day weekend surgery clinics and a number of dental clinics every year. During
surgery weekend cycles, the organization is able to treat 60 to 65 kids, thanks to the roughly 400 community volunteers, mostly medical professionals, who donate their weekends. To date, nearly 9,000 surgeries with a value of more than $51 million have been performed on the Rady Children’s campus. “A lot of our volunteer surgeons and medical professionals have said what they like best about working with Fresh Start is that they can give back without having to leave the community,” explains Celene Nigro, RN, Fresh Start’s director of medical programs. “They have been on medical missions in their career, and they now like that they can provide this high- quality care in a great facility where they have access to all the supplemental needs to provide the comprehensive, follow-up care that’s often needed with complex surgeries.” To learn more, visit www.freshstart.org.
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IN GOOD HANDS
B Y CHRISTINA ORLOVSKY An ATV accident turned a family vacation into a journey to save a young girl’s arm
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W When the Ward family set off on a vacation to Northern California for the Independence Day holiday in 2021, they had no idea that the trip would take a terrifying turn. On July 3, Ella Ward was a passenger in a six- seat ATV being driven by her father, Sam, when the ATV unexpectedly overturned, pinning the 8-year-old’s arm underneath the roll bar. While the rest of the vehicle’s occupants escaped unscathed, the ATV slid, injuring Ella’s arm even further, until three adults were able to turn it upright and get Ella to safety. What happened next was a whirlwind for the little girl and her parents, who were vacationing on a ranch an hour’s drive from the nearest children’s hospital. “Ella’s arm was broken in between her wrist and elbow,” Sam recalls. “Not only that, but because of the movement of the ATV, she lost 50 percent of the muscle and 75 percent of the skin on her right forearm. So, along with the open broken bones, her arm was full of dirt, rocks and bacteria. It was mangled.” An ambulance transported the family to a hospital in Fresno. When they arrived, Sam says, “there was a flood of doctors and they were all extremely concerned—they didn’t know how they were going to address it.” Ella was rushed into surgery. The surgeon, who’d been in the military, told the Wards that his plan was to treat Ella as if she were a soldier with a war wound.
“That’s how bad it was,” Sam says. “He said, ‘I know how dangerous this is and I’m going to hit it hard and treat it for infection.’ That’s how they started—cleaning the arm, treating infection and performing lifesaving measures.” At this point, the Wards and Ella’s doctors were unsure if they would be able to save her life, let alone her arm.
ELLA’S DOCTORS WERE UNSURE IF THEY WOULD BE ABLE TO SAVE HER LIFE, LET ALONE HER ARM.
“I am certain that if this accident had happened in many other states, Ella would have died from the severity of her injury,” her mother, Lindsey, says. “In most places, her arm would have been immediately amputated. We didn’t know for a while if hers would have to be—it was always a possibility.”
Ella underwent several surgeries in Fresno while her medical team decided on the best course of action. Doctors cleaned her wound and put her bones together with titanium rods. Then, they searched for another team of experts to take over the remainder of the extensive care Ella was going to need to repair her nerves, muscle and skin.
LEFT: Child Life Specialists helped make Ella’s stay more fun RIGHT: Ella with her piggy pal following skin graft surgery
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SEARCHING FOR SUCCESS IN SAN DIEGO
A week after the accident, the Wards left Fresno to head home to San Diego and meet with Katharine Hinchcliff, MD, a plastic surgeon at Rady Children’s and an assistant clinical professor at the UC San Diego School of Medicine who specializes in reconstructive surgery, pediatric and adult upper extremity surgery and peripheral nerve surgery. “They originally wanted us to go to Stanford, but when we told them we lived in San Diego, they found Dr. Hinchcliff. They interviewed her and felt that she would be even better at getting Ella’s hand to work again,” Sam explains. The family drove back to San Diego with Ella medicated and with a special vacuum to drain the open wound on her splinted arm. “She was like a china doll, she was so fragile,” Sam says. “We left without them being able to find her radial artery. She still had 50 percent muscle loss and most of her skin missing. But they said she had an 80 percent chance of keeping her arm.” Still, Lindsey adds, “We were told that even if she kept her arm, there wouldn’t be any function.”
The Wards arrived at Rady Children’s with hope that Dr.
SHE WAS LIKE A CHINA DOLL, SHE WAS SO FRAGILE.
Hinchcliff would have a plan not only to save Ella’s arm, but to help her regain as much function as possible. They quickly learned
them give up hope. You have to put all the pieces of the puzzle and come up with a summation that’s not going to overwhelm them.” Dr. Hinchcliff wasn’t able to devise a plan for reconstruction until she could evaluate Ella’s arm in the operating room. But despite the stress of not knowing what the future held, the Wards trusted that they were in the best hands with Dr. Hinchcliff and the team at Rady Children’s. “Even before meeting her, we knew she was an incredible person just based on her experience— and she was,” Lindsey says. “She was incredible with her communication with us—we were able to reach her at any time—and treating us not just as patients, but as parents.”
that with an injury as severe as Ella’s, with such a high risk of infection, the best plan is to have no plan at all. “The most difficult thing for a kid with this type of injury is trying to give them and their family a realistic idea of the prognosis and picture ahead when you don’t know for sure what that’s going to be,” Dr. Hinchcliff says. “Trying to tell a concerned family what to expect is a skill we all develop and are continually working on as trauma surgeons. “You don’t want to paint too rosy a picture and get a family’s hopes up,” she adds. “And you don’t want to paint too bleak a picture and have
WINTER 2023 HEALTHY KIDS MAGAZINE 19
Dr. Hinchcliff’s empathy made an impression on them, Lindsay says. “When you meet a lot of doctors, you realize some have empathy and some don’t. Dr. Hinchcliff does.” Sam adds: “The first day we met her, she spent at least two hours with us. Then she came every day, for at least an hour, sometimes three hours. I asked her a million questions, and she answered every single one until I couldn’t think of any more to ask. “Her bedside manner was absolutely over the top,” he continues. “She was candid about what happened, she was incredible at describing what she was going to do, and she told me to let her know the level at which I wanted to hear or see what Ella’s arm was like. I told her I couldn’t stomach it and I couldn’t mentally handle it, but if my kid had to handle it, I would, too.”
ENDURING THE EXTREME
Over the next month that Ella was a patient at Rady Children’s, there was, in fact, a lot to handle. The first step was to find Ella’s radial artery, which sends oxygenated blood to the lower arm and the hand. “That first surgery was supposed to be a basic surgery, but it ended up being one of the most important,” Sam recalls. Dr. Hinchcliff found the radial artery, which was fortunately still intact. She also evaluated the remaining muscles and tendons, debriding those that were not viable and connecting others to set the groundwork for future function. “She gave that a 50/50 chance of succeeding,” Sam says, “and at the time we didn’t know how significant it would be.” Finding the radial artery improved Ella’s candidacy for a muscle and skin transplant surgery, called a free tissue transfer, which could be used to replace the missing tissue in her arm. In this reconstructive technique, surgeons remove a piece of tissue from one site where it has a blood supply and connect the vessels feeding that muscle and skin to a blood vessel at another site. In Ella’s case, the
TOP: Ella works to get her strength back up BOTTOM: Ella’s family dubbed her injured arm her “tough arm”
donor site was the muscle in her upper left back, which was removed and attached to the injured area of her arm. “The human body is nice in that it has a lot of spare parts and a lot of redundancies, so there are certain muscles you can do this with,” Dr. Hinchcliff explains. “The muscle we took from Ella’s back is a workhorse muscle in that it’s often used in scenarios like this where you don’t need them as intended.”
Dr. Hinchcliff performed
THAT FIRST SURGERY WAS SUPPOSED TO BE A BASIC SURGERY, BUT IT ENDED UP BEING ONE OF THE MOST IMPORTANT.
Ella’s surgery in conjunction with one of her partners from UC San Diego to ensure the surgery was safe and efficient. After surgery, Ella was transferred
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taught those basic things, but when you
Southern California with pediatric hand therapists,” says Dr. Hinchcliff. Because a hand therapy certification is so time- intensive, not many people opt to pursue it, Dr. Hinchcliff says. “But it’s very subspecialized care that Rady Children’s offers, and it’s really important, because if you send these kids to adult hand therapists, they’re not going to get the same result that they will from someone who is trained in pediatrics,” she says. Without a specialist like Hoover, Ella’s case may have had a different outcome. “Plus, the personality of a hand therapist and a hand surgeon overlaps a lot,” Dr. Hinchcliff says. “People who go for hand therapy, they’re interested in complicated therapy that results in high- level function. That’s our goal: to try to get patients back to functioning at a high level.” To achieve this high level of function, Hoover relies on splinting—using thermoplastic splints she creates herself—to set the hand and adapt to growth and changes in function. It’s a special skill that she honed while getting her certification. “In OT school we have a lab, and they teach us basic splinting where we draw a pattern using the landmarks of the hand and then we cut it out of a thermoplastic and custom mold it to a patient,” she explains. “We are
go out in the field, you’re never going to be making splints. You get the education, but you probably therapist comes in. Now, I spend 40 percent of my day making splints.” Splints, plus motivational activities like darts, therapy putty and rubber- band shooting that she customizes to each child are what help Hoover’s patients, like Ella, achieve extraordinary success. “Therapy is an art. Everyone don’t get that practice. That’s where the hand is different and you have to tap into what motivates them,” she says. “Overall, cases like Ella’s are why I love what I do. Working with the families and seeing the progress. Coming up with fun things for the kids to do and seeing their excitement and how much they use their extremity even with their limitations. And finally, seeing how excited they get to
A Helping Hand Denise Hoover, OTR/L, CHT, did not set out to be a hand therapist. In fact, she didn’t even intend to be an occupational therapist. She started as a physical therapy major and then switched to occupational therapy—a profession, she says, she found compelling. “You have to be creative to find activities that will motivate someone, specifically a kid, who experienced a traumatic injury,” she explains. After working at Rady Children’s for nearly two decades, treating kids with autism, handwriting difficulties and a variety of other therapeutic needs, Hoover was encouraged to seek specialized training in hand therapy. “It seemed like the perfect combination of occupational therapy and physical therapy,” she says. So, 13 years ago, she decided to go for it, which meant five years of training for a certification. Hoover is now the only practicing pediatric certified hand therapist in San Diego and is currently training four others. “That’s a unique thing about Rady Children’s in general— they are the only place in
be able to use their hand the same way they did
Without a specialist like Hoover, Ella’s case may have had a different outcome.
before. People amaze me
every day with what they’re able to achieve and overcome.”
Denise Hoover, OTR/L, CHT
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AT THAT POINT, ELLA WASN’T ABLE TO PICK UP ANYTHING OR MOVE HER ELBOW. SHE COULD
just three pediatric certified hand therapists in San Diego and the only one still in practice. She’s also a key to Ella’s success story.
to the intensive care unit because the new muscle—which was completely exposed with only a small paddle of overlying skin—had to be continuously monitored. “The ICU nurses were listening to her heartbeat for hours, making sure the transplanted muscle was receiving blood. If the blood flow to the muscle stopped, she would have had to go immediately back to the OR—it was critical to keep that muscle alive,” Sam says. “Essentially, for the next four days in the ICU, the job was to monitor that muscle.” Ella also needed a blood transfusion. She was on a PICC line and an IV for medication, nutrition and liquids. “She was a wreck,” Sam says. “Even though it was a successful surgery, we weren’t through the woods yet. We knew things could go south at any minute.” Luckily, the muscle transplant took, and Ella could move forward to the next step: a skin graft that involved removing skin from her upper thighs and transplanting it to her arm. Once the graft was complete, the surgeons’ work was nearly done, but Ella’s was just beginning.
“One thing I’d emphasize about
BARELY MOVE HER FINGERS.
Ella is that she has a really good outcome and it’s in large part due to her therapist,” Dr. Hinchcliff says.
“When we met Denise, Ella couldn’t use her hand at all,” Sam recalls. “Denise said, ‘I’ve been prepared to see her. She’s going to be one of the biggest challenges I’ve ever faced, and I’m ready to take it on.’” At that point, Ella wasn’t able to pick up anything or move her elbow. She could barely move her fingers. “As recently as a few months ago, she couldn’t touch her face with her palm, only the back of her hand,” Sam says. “Now, speeding through to today, she has 90-percent function in her hand. She can write. She can do handstands! Seeing where she’s been to where she is now is incredible.”
ON TO OCCUPATIONAL THERAPY
The week after the skin graft was trying for Ella. She wouldn’t eat. She was sick. And she still had a long journey ahead of her to get her newly repaired arm back to normal functioning. “We got her arm fixed but at what cost?” says Sam. “It was scary for us because we still didn’t know what to expect. With the arm, it’s not just a procedural or medical fix; it’s also functional. So, I had questions: Will she be able to write again? It wasn’t promising. Will she be able to turn a doorknob? Possibly. Will she be able to ride a bike? Maybe. You just keep listing things in the hopes of hearing yes. We were told they thought Ella’s hand would likely be more like a helper hand. There was still this black cloud hanging overhead.” That’s when occupational therapist and certified hand therapist Denise Hoover entered the picture. Hoover, who has been with Rady Children’s for 31 years, is one of
LEFT: Ella’s friends
and family show their support with signs
RIGHT: After
treatment, Ella is back to doing what she loves— dancing
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