For many providers, the COVID-19 pandemic has prompted a flurry of tough questions from patients and their families: How do I explain this to my children? How do I help my child understand why their birthday party is canceled? How do I maintain normalcy while my child is out of school and stuck at home?
If you’re also fielding these questions from worried caregivers, this compilation of resources from CHOC Children’s — with more to come — can help address these questions and more:
pediatric healthcare might be an unlikely pairing – but a recent event combined
the two, drawing a range of multidisciplinary experts, including six CHOC
Children’s nurses, together to create disruptive solutions for pediatric and
physicians, engineers, data scientists, designers and entrepreneurs gathered at
the three-day “Hack-a-thon,” hosted by MIT Hacking Medicine and the Innovation Institute at the Innovation Center in Newport Beach, to develop tech
solutions and fast-track development of value-driven concepts.
The CHOC Nursing Research and Innovation Council helped to facilitate nurse involvement in this event, held Feb. 7 to 9. Six nurses actively participated on separate interdisciplinary teams: Donna Bigani, Erin Rentch, Pernilla Fridolfsson, Kylie Castro, Wanda Rodriguez and Jennifer Hayakawa.
The team led by
Kylie won second place and $750 for their innovation related to improving the
care of patients with autism spectrum disorder.
“The process was nerve-wracking and very tiring, but at the end of the weekend it was completely worth it and an amazing learning experience,” Kylie said. “It was so interesting stepping into another world, learning to speak another language – or what felt like another language – and being pushed outside my comfort zone.”
Several CHOC specialists as well as other staff also participated in the event.
Patients in the CHOC Children’s Cherese Mari Laulhere
Mental Health Inpatient Center (MHIC) have a friend in Dana Point’s Ocean
Institute, a non-profit aimed at educating SoCal youth.
The organization’s mission, “Using the ocean as our
classroom, we inspire children to learn,” comes to life in the MHIC, where
patients age 3-17 receive hands-on maritime education. It is a unique
partnership – one that both patients and staff are passionate about.
After volunteering at CHOC for a long time with medical
patients, Ocean Institute Distance Learning Programs Coordinator Danelle
Hickman met with MHIC leadership to determine if bringing the Ocean Institute
program onto the mental health unit would be feasible. It was a unique idea;
few inpatient centers have any volunteers, let alone regular visits from a
group of them. But despite the special considerations, everyone was determined
to make it work.
After mental health-specific training, members of the
Ocean Institute began their valued work in the MHIC in early 2019. Led by
Hickman, the STEAM-inspired (science, technology, engineering, art and
mathematics) program includes discussion, questions and answers, hands-on education,
activities and art projects. The group also brings in sea animals for patients
to see and touch.
Hickman is passionate about offering patients an engaging
“Our mission is to serve students from all walks of life.
We are proud to provide programs for CHOC patients. This fills a community need
for more than ‘feel-good’ programs; these powerful educational adventures aim
to be life-changing.”
In an early December visit, their eighth of the year, Hickman
and two Ocean Institute volunteers began the lesson by asking patients and
staff to introduce themselves and discuss their favorite ocean animals. Answers
around the table included sharks, whales, sea otters, sea turtles, seals and others.
One patient chose jellyfish because of a memorable scene in the Disney-Pixar
film “Finding Nemo.” Another patient chose dolphins, finding them “graceful but
powerful when they need to be.”
The team then presented the patients with three varieties
of live sea star and two preserved sea turtles. The group passed around the animals,
noting some of them felt soft and others rough. The observation turned into a discussion
about the difference between vertebrates and invertebrates; the patients worked
together to figure out which category each animal falls into.
Seeing the lesson unfold makes it clear why the Ocean
Institute partnership is so valued in the MHIC.
“The thought of bringing ocean life onto an inpatient
mental health unit was new for me,” says Director of the MHIC Dani Milliken.
“Luckily, Danelle was so amazing, kind and flexible as we walked through all of
our dynamics and special needs. And now, we couldn’t be happier with how the program
has fit into our unit. Patients absolutely love having the Ocean Institute
visit, and the buzz of excitement lasts long after each session. Even our most
isolative patients enjoy interacting with the animals and teachers.”
For patients on the unit, the visits are about much more
than learning about the ocean.
“Having community members come onto an inpatient mental
health unit and be side by side with patients, learning and growing with them,
is truly remarkable,” says Milliken. “It has been such an incredible journey so
far, and we are so lucky to have the Ocean Institute program here at CHOC for
such a vulnerable population.”
To Hickman and the Ocean Institute team, the joy of the
partnership comes through seeing the kids as future ocean stewards who deserve
to learn, play and discover during their time at CHOC.
“Our programs allow patients to be heard and show them
that others outside the hospital care about their thoughts and feelings. The
program content affords them a way to visually and creatively express
themselves, making choices that support the unique artwork that they create. Discussing
the ocean and the animals that live there provides a positive common ground
from which to build confidence in a safe environment.”
The partnership has become so cherished on both sides
that the Ocean Institute, thanks to a generous donor gift, is bringing the program
to CHOC’s MHIC twice per month in 2020.
With an aim of addressing a critical and unmet need in rare
disease research, CHOC Children’s will advance rare disease genome editing
therapeutics, thanks to a $1 million grant from The Larry and Helen Hoag
The funding will help form CHOC Children’s Center for
Advancing Rare disease Editing (CARE), allowing researchers to further their
work to use genome editing to rapidly generate, characterize and treat
preclinical models of rare disorders with known pathogenic mutations.
Genome editing therapy has the potential to permanently
correct underlying pathogenic mutations in patients with some rare diseases.
This treatment addresses the root cause of the disorder, eliminating the need
for more standard therapies like enzyme replacement and stem cell
transplantation that often require repeated treatments.
“CHOC is at the forefront of operating at the interface of
translational research and clinical care of rare disorders,” said Brent
Dethlefs, executive director of the CHOC
Children’s Research Institute. “Our ultimate goal is to provide patients
with rare diseases with an objective, rigorous assessment of whether genome
editing therapy has the potential to advance their current standard of care.”
The work will build upon CHOC’s existing successes in
developing preclinical models of rare diseases. For example, CHOC’s lysosomal
storage disorders research team has already generated the first preclinical
models of Pompe disease – a rare and fatal disorder that affects the heart and
muscles – that are suitable for genome editing therapy and exhibit molecular,
biochemical and functional analogy to patients with the severe infantile-onset
form of the disease.
“Given the success of this project, we have received
multiple inquiries from research colleagues seeking to collaborate and patient
advocacy groups hoping to generate additional preclinical models of rare
disease, but until now, we’ve never had the resources to participate,” CHOC
Jeffrey Huang said. “We believe that CARE has the potential for rapid
growth given the intrinsic scalability of genome editing as a strategy to
generate preclinical models and develop novel therapeutics.”
The Hoag Foundation funding complements a grant CARE
recently received from the CHOC Children’s Foundation’s One Wish Grants
awards. The grant awards unrestricted funds to outstanding ideas that drive
advancement toward CHOC’s strategic goals.
The mission of The Larry and Helen Hoag Foundation is to educate, empower and create greater opportunity for at-risk children to become independent, productive and contributing members of society; support medical research and technology to enhance the health and well-being of children; and support such other compelling purposes that will enhance the quality of life for residents in Southern California.