What we’re thankful for this year: 2020

Despite the countless challenges brought on by 2020, the physicians, nurses, staff, patients and donors that make CHOC a world-class pediatric healthcare system have retained a sense of gratitude. Several members of the CHOC community share what they are most thankful for this year.

Kim Cripe_CHOC president and CEO

Kim Cripe, CHOC president and CEO

“There are no words to fully express how thankful I am to the physicians, nurses, and staff who have worked so tirelessly and sacrificed so much these past nine months of the pandemic.  I have always been proud of our team and how well we support one another on a daily basis. Yet, our ability to rally in a crisis, particularly as long as this one has been (and will continue to be), has truly left me in awe. I am enormously grateful to everyone at CHOC across all departments, geographies and locations for the way we are not only tackling this challenge together, but also supporting the children and families we serve.” 

chris-furman

Chris Furman, chairman, CHOC board of directors

“I continue to be grateful for serving as chairman of CHOC’s board of directors.   Especially during these challenging times, I am incredibly honored to help CHOC’s physicians, staff, volunteers and donors protect the health and well-being of children in Orange County and beyond.” 

dr-jasjit-singh

Dr. Jasjit Singh, pediatric infectious disease specialist

“Despite all the challenges and changes this year has presented, I feel grateful to be part of the CHOC community. At the beginning of this experience, when there were still so many unknowns, I saw nurses, doctors and all the staff put aside their own fears and rise to the challenge in order to take care of their patients. And I have been watching them continue to do that every day since. It has been inspiring. I am grateful to my colleagues, and their commitment to implementing the latest guidelines and regulations to serve our patients and their families, and for their much-needed detective work on complicated cases. I’m grateful for CHOC parents and my patients – for sharing their strength, resilience, humor and hope with us every day. And last but not least, I owe gratitude for my wonderful family & the fact that we are in a place that allows us to serve our community.”

Dr. Terrence Sanger, chief scientist at CHOC Children's

Dr. Terence Sanger, vice president for research and chief scientific officer

“In a year that has been filled with unprecedented challenges, I am thankful for the opportunity to have joined CHOC’s mighty brigade in February 2020 to help the organization continue to go beyond. I am grateful to be working alongside such amazing colleagues who are committed to the mission of elevating the cutting-edge work being conducted at CHOC’s Research Institute.” 

CHOC Hospital_Outpatient evaluation center

Kelly Navarro, RN, BSN, CPN, CHOC outdoor evaluation center 

“After working at CHOC for 10 years, I am so grateful to have had the opportunity to serve CHOC patients and families in a new way this year at our outdoor evaluation center. CHOC quickly established these outdoor, drive-through facilities at the onset of the COVID-19 pandemic to offer our patients a safe and convenient way to be evaluated by a pediatric medical provider, receive treatment when necessary, and undergo COVID-19 testing. The center gives us the ability to ensure continuity of care for patients having surgery, as well as those needing sleep studies and many other necessary procedures. I am grateful for the privilege of serving as a constant for our patients and their families: that they can always count on CHOC for safe, high-quality and convenient care.”


Allison, age 12, CHOC patient

Dr. Mike Weiss

Dr. Michael Weiss, vice president of population health

“At a time in our lives when we have never felt more distant from our friends, neighbors and loved ones, I’m grateful that CHOC was able to deepen our “connection” with our patients and families and provide high-quality medical care through telehealth technology. This service has proven to be a true lifesaver for many children and families. From primary care to sub-specialty care and mental health to speech therapy, CHOC has provided over 55,000 telehealth visits since mid-March. Our patient satisfaction scores have remained over 90% and the subjective feedback we receive is overwhelmingly positive. In addition, this technology has allowed us to support a broader community of patients and families as well as our Orange County schools by providing COVID-19 support and education when and where it is most needed. Connecting is always important, but it has never meant more to our community, and to us, than it does now!”

Grace Magedman

Grace Magedman, executive director of pharmacy

I am very proud of and extremely grateful for everyone involved in launching our prescription delivery service during the state’s spring lockdown. The flexibility, compassion and innovation demonstrated by staff across multiple departments and by our supporters, Hyundai Motor America and Russell Westbrook Hyundai of Anaheim, resulted in a valued resource that helped safeguard the community we serve, especially the most medically fragile members. 

christopher-min-pediatric-psychologist-choc-childrens

Dr. Christopher Min, pediatric psychologist

“Despite the challenges that 2020 has brought, I find myself even more thankful than years past. I am so very thankful for my wife and two little girls, as well as the little furball we recently welcomed into our family. I am also grateful for each of my team members who have come together to offer mental health services in a primary care setting; for fighting the front lines against mental illness in children; and for the way they have grown in their hearts of service, all amidst a global pandemic. I am reminded of the strong bonds that I have with trusted partners at CHOC across mental health, primary care, clinical staff, and CHOC at Mission Hospital. And I am most grateful for the privilege of serving the most vulnerable among us, our children.”


Korbin, age 6, CHOC patient

CHOC clinical associate

Ashlynn Graham, clinical associate

After a year of uncertainties and a new normal, it can be hard to find the good in what 2020 has thrown our way. This year and every year, I am blessed with my family and our health. I am grateful that I have had the ability to work at both CHOC Hospital, and CHOC at Mission Hospital. I am also thankful for all the first responders that have continued to give to those in need during these unthinkable times.

Clavis Foundation

Clavis Foundation’s Tusdi Vopat and Stuart McClure. Tusdi is also a member of CHOC Foundation’s Board of Directors

“We are extremely blessed and grateful for many things, including the privilege to work with CHOC. Their tireless commitment and dedication to the health and well-being of our children is what inspires us all to strive and support such a great institution. Never before has CHOC, or anyone, been met with such extreme challenges as the COVID-19 pandemic. Yet, CHOC and its staff continues to put patients first, keeping families and healthcare workers safe, and understanding the increased challenges of mental health during this time. We are honored to be part of this amazing team and look forward to a stronger and brighter future ahead for all of us.”

Colleen Smith CHOC nurse

Colleen Smith, manager of clinical programs, CHOC at Mission Hospital

“As I walked through the CHOC at Mission Hospital doors the morning of Sept. 11th, 2020 I took out my phone to text my hiring manager, still a longtime friend, to say, ’20 years ago today I walked through these doors for the very first time thanks to you.’ I had no idea all those years ago what my nursing career would look like so many years later. I am filled with gratitude every day, not only for the opportunities I have been given but, also for the joy I feel working at CHOC at Mission. Not everyone can continue to say they love what they do 20 years later. I consider that a true blessing! Thank you, CHOC at Mission and the entire CHOC healthcare system,  for always believing in me and growing me into the nurse I am today. I feel honored to be a pediatric nurse in my community”

Medical Innovation, Research and Entrepreneurship (MIRE) program ignites high-schoolers’ interest in biotech entrepreneurial field

For two weeks this summer, Leanne Ho, a senior at Oxford Academy in Cypress, immersed herself in the fascinating world of biotechnology and medical device innovation and entrepreneurship.

She was one of 57 sophomore through senior high school students from five different Orange County school districts who participated in the Medical, Innovation, Research and Entrepreneurship (MIRE) program, a joint project of the CHOC Children’s Research Institute, The Young Entrepreneurs OC, and  University Lab Partners .

Leanne led a team of other STEM-motivated high schoolers on a final project: pitching a business idea to a panel of experts that included physicians, investors, university professors and biotech entrepreneurs.

Her team came up with the idea of MedMonkey, an app designed to encourage adolescents living with epilepsy to take their prescribed medications on time by interacting with an animated chimpanzee.

MedMonkey won the final pitch competition and a scholarship to a hands-on laboratory training course at University Lab Partners,  a nonprofit wet lab and medical technology incubator in Irvine.

MedMonkey app
MedMonkey is an app designed to encourage adolescents living with epilepsy to take their prescribed medications on time by interacting with an animated chimpanzee

With her scholarship, Leanne completed the hands-on laboratory training following the MIRE course and earned her digital certification through UCI’s Department of Continuing Education in Molecular Biology Laboratory Techniques. With her new certification, Leanne was able to secure an internship at University Lab Partners this fall.

“Every speaker in the program had different experiences in business, law, research, engineering and science, and it was interesting to learn how the fields were connected to each other and relate back to medicine,” Leanne says of the summer program.

Now, this fall, the program has expanded with 120 high school participants.

Real-world view

Speakers in the fall MIRE program include several Orange County leaders in innovation and medicine who volunteer their time and expertise to give the students a real-world view of the multidisciplinary skills needed to thrive in the biotech entrepreneurial world.

Students immerse themselves in research activities related to bioscience, engineering and medicine. They learn how technology can support diagnosis and treatment plans and learn how environmental factors influence pediatric health.

MIRE is intended to educate the next generation of researchers and help prepare them for the ongoing bioscience and data revolution.

“The CHOC Research Institute wants to inspire the next generation of investigators and STEM leaders in healthcare innovation, potentially laying the groundwork for great strides in translational science, medical device development and basic science research,” says Dr. Terence Sanger, CHOC’s vice president of research and chief scientific officer.

The fall MIRE session will focus on research and allow students to explore pediatric clinical needs. Students will also learn about ethical conduct in research and how to frame a research question, explains Nadine Afari, manager of research programs at CHOC.

The MIRE program is one of many projects that will launch from the partnership between CHOC’s Research Institute and University Lab Partners.

The effort brings together clinical skills, business development skills, hospital management, technology strategy, product ideation, and technology development to help support the larger Orange County biotech and medtech community.

“This immersive program transforms career exploration and discovery for Orange County students interested in pursuing an exciting career in innovation,” says Karin Koch, ecosystem director at University Lab Partners.

One of the goals of MIRE is to create a talent pipeline for the next generation of biotech innovators in the life sciences industry.

The bioscience industry represents the unique intersection of key building blocks for societal and economic progress – extremely high levels of innovation that are saving and improving lives through advancements in biomedical, energy and advanced food and industrial technologies; and expanding a wide mix of employment opportunities with wages and incomes that support a high standard of living, Koch says.

The MIRE program is delivered through the North Orange County ROP (NOCROP) and College and Career Advantage in South Orange County, with student participants getting 50 hours of instruction; 10 hours of dedicated mentorship; and 20 hours of clinical needs assessments, project proposals/presentations, literature reviews and intellectual property challenges. Students earn 2.5 University of California-transferrable credits for their participation.

“By connecting our most precious commodity, our students, to businesses and industry leaders who will invest in them, this partnership benefits us all,” says Terri Giamarino, superintendent of NOCROP. “We want our students to remain in Orange County and be a part of our growth and sustainability.”

Leanne, who plans to study biology in college, said the program opened her eyes to many future career opportunities.

“I was able to create a new understanding and expand on what I already know about medicine,” said Leanne, who for now is interested in a possible career in forensic science.

Wired for hope

Every morning when she awakes, Sydney Amato begins her daily battle with her body.

If she’s lucky, the 16-year-old will have gotten a handful of hours of uninterrupted sleep – dreaming, perhaps, of doing what most healthy kids her age take for granted:

Hanging out with friends. Going to school. Learning to drive.

Because of a neurological condition called dystonia, Sydney, who is in excellent cognitive health but speaks and walks with some difficulty, suffers from involuntary and near-constant contraction of muscles in her neck, arms, legs and trunk.

Her mind is unable to control the painful jerking that makes most of her body twist and go rigid, her muscles moving out of normal sequence.

Born a right-hander, she can feed herself with some struggle using her left hand. She wants to dress and put on makeup herself, but those normally simple tasks become lengthy ordeals.

“My body fights me all the time,” says Sydney, trying to distract herself in her hospital bed one morning by watching an old episode of “Keeping Up with the Kardashians.” Listening to her favorite music – Ariana Grande, Lauren Daigle, Drake – can only temporarily transport Sydney away from her debilitating condition.

“She knows what she wants to do,” says her father, Louis. “But her body won’t let her.”

Specialists at CHOC are working hard to change that.

CHOC patient and her father
Sydney, pictured with her father.

A first for CHOC

Recently, a team led by Dr. Terence Sanger, a physician, engineer and computational neuroscientist who joined CHOC in January 2020 as its vice president of research and first chief scientific officer, and Dr. Joffre E. Olaya, CHOC’s functional restorative neurosurgeon, implanted several temporary electrodes into Sydney’s brain. Collaborating with CHOC physicians was CHLA neurosurgeon Dr. Mark Liker.

Dr. Terrence Sanger, chief scientist at CHOC Children's

The surgery marked the first time a patient with a movement disorder at CHOC underwent a procedure called deep brain stimulation (DBS).

Working in perfect harmony as a team, Dr. Sanger and Dr. Olaya oversaw the first portion of a three-stage surgery on Sydney. As the surgeon, Dr. Olaya placed the leads following advice from Dr. Sanger, the neurologist, on where they should go.

 In the procedure, millimeter-thick electrodes were precisely positioned into the basal ganglia region of Sydney’s brain – about 3 inches deep. The surgery involved the use of the ROSA robot, the same tool that has been used during brain surgery on epilepsy patients at CHOC since 2015.

Considered one of the most advanced robotized surgical assistants, ROSA — which stands for robotic operating surgical assistant — includes a computer system and a robotic arm. It’s a minimally invasive surgical tool that improves accuracy and significantly reduces both surgery and anesthesia time.

The ROSA robot helped with implanting and targeting the electrodes and a portable operating-room CT scanner confirmed their position.

Turning down the volume

 DBS is designed to ease Sydney’s condition by sending electrical currents to jam her malfunctioning brain signals.

Think of turning down the volume on your car radio.

“Nobody really understands the cause of dystonia,” Dr. Sanger explains, “but there’s probably too much electrical stimulation going on in the motor areas of the brain. We’re trying to calm down that extra noise.”

Although DBS dates to the 1960s, it wasn’t until the 1980s that the modern era of using it to treat adult patients with tremor and Parkinson’s disease began.

In 2000, Dr. Sanger, working with engineers, data scientists, neurosurgeons and others, began implanting electrodes in pediatric patients.

Instead of the established method of placing the leads at predetermined sites and hoping they worked, Sanger and his team, just as they did in Sydney’s case, placed temporary leads to best assess where they should go permanently based on patient response.

In 2016, Dr. Sanger began honing DBS to treat children with dystonia. Before the surgery on Sydney, Dr. Sanger had overseen DBS on 26 children using the same three-stage technique. He says 80% of those children have seen successful results.

Early signs

Sydney began showing symptoms of dystonia – tremors in her hands – when she was 5 ½ years old.

A year later, she was using a wheelchair. She had her first brain surgery at age 7.

Since then, “she’s been all over the U.S.” seeking the right treatment for her condition after several setbacks, her father says.

But her condition was not improving.

Early this year, a neurologist in Kansas City, Missouri, recommended that Sydney see Dr. Sanger.

“I asked him, ‘If Sydney was your kid, where would you go?’” Louis Amato recalls. “He said, ‘Hands down, Dr. Sanger.’”

The COVID-19 pandemic pushed Sydney’s surgery to mid-August.

Sydney already had two electrodes in her brain that were only partially working when she came to CHOC in early August for surgery.

After two extensive run-throughs with their team, Dr. Sanger and Dr. Olaya, in a six-hour procedure that at one point required nearly 20 people in the operating room, implanted more electrodes to give Sydney a total of nine.

Dr. Joffre Olaya, a pediatric neurosurgeon at CHOC Children's
Dr. Joffre Olaya

After surgery, optimism

On Thursday, Aug. 20, six days after Sydney’s surgery, Dr. Sanger stopped by her room at CHOC Hospital. The room was decorated in purple, Sydney’s favorite color.

Dr. Sanger greeted her as CHOC staff members, joined by members of Sanger Lab, Dr. Sanger’s research laboratory that conducts research in pediatric movement disorders, prepared to have Sydney walk back and forth down a hallway while connected to electrical equipment programmed to record signals in her brain and muscles.

A thick coil of multicolored wires snaked from under a large white bandage covering Sydney’s head. Extending about 6 feet, the wires were plugged into specialized recording equipment controlled by Jennifer MacLean, a CHOC pediatric nurse practitioner whose job was to manipulate the strength of electrical charges affecting the four points of contact on each electrode.

The goal: determine which charges worked best and on which electrodes.

“It could have turned out that the DBS procedure made no difference,” Dr. Sanger says. “But we’ve seen a very good response in Sydney.”

For example, her once mostly useless right hand was working much better.

“It gives you goosebumps,” Louis Amato says.

After taking a bite of a veggie burger and sipping some water, Sydney started to walk.

Following her were seven CHOC and Sanger Lab specialists.

“Go nice and slowly,” Jennifer told Sydney. “You’re going too fast for us!”

Perhaps Sydney was anxious to get back to riding Tigger, a quarter horse, in her hometown of Carthage, Missouri. She has been riding him for six months.

CHOC patient horseback riding
Sydney is eager to get back to riding her favorite horse, Tigger.

“Her balance isn’t bad on the horse,” says Louis Amato.

Sydney also loves to tan by her pool and swim.

What she wants most, however, is to be freed from her body so she can return to school and do what most teens enjoy.

“It’s stressful,” says her mother, Angie. “She has a lot of friends her age, but she can’t do a lot of the things they do. She has her days when she can get really upset.”

Now, however, working with Dr. Sanger, Dr. Olaya and the entire team at CHOC, the Amatos are more optimistic than ever.

“We’re hopeful that this is going to be a big life-changer for her,” Angie Amato says. “That would be the best thing that could ever happen – better than winning the lottery.”

‘The A-Team’

After crunching numbers for a week to assess which of the nine electrodes proved to be the most effective based on how Sydney responded to varying degrees of electrical currents, Dr. Sanger and his team settled on four electrodes that were permanently used to treat her condition – three new ones, and one existing one.

The team performed this second surgery on Sydney in late August.

In the third and final surgery, successfully completed in early September, a rechargeable generator that powers the DBS leads was implanted in Sydney’s chest.

“As we get better and better at this and as the technology progresses, we’ll be able to do this on kids who are less sick than Sydney,” Dr. Sanger says.

Dr. Sanger and Dr. Olaya are poised to dramatically improve the lives of many more patients like Sydney at CHOC.

“I’m really excited that we will be doing more of these procedures to help pediatric patients with movement disorders and significantly improve their quality of life,” says Dr. Olaya. “I look forward to continuing to provide this type of personalized care.”

a CHOC patient poses with her mom
Sydney, pictured with her mother.

Angie and Louis Amato say Sydney has never gotten this much special attention during her 11-year-plus medical journey.

“Here at CHOC,” Louis Amato says, “we feel like we’re with the A-Team.”

Says Sydney: “I’ve never felt this much confidence and this good about treatment before.”