All posts by CHOC Children's

CHOC rare disease expert stresses importance of newborn screening

From just a tiny sample of blood, a lab can test for 35 rare diseases in newborns that, if left undetected, could lead to seizures, developmental delays, permanent brain damage or death.

If results are positive for a metabolic disorder, these labs turn to the experts at CHOC metabolic laboratory for further analysis and treatment of newborns just days old.

September is Newborn Screening Awareness Month, and Dr. Jose Abdenur, director of CHOC’s metabolic laboratory, stresses the importance of these newborn screenings in order to prevent such grim scenarios from playing out.

Dr. Jose Abdenur, director of pediatric metabolic disorders at CHOC

Newborn screening is a public health program that screens all babies for many serious but treatable genetic disorders, and CHOC is one of the state’s largest referral centers for the program. All babies born in California are required to get screened soon after birth, but the diseases babies are screened for varies by state. In Orange County alone, some 38,000 babies are born every year.

CHOC is the only location on the West Coast for children who need cutting-edge treatment for certain metabolic diseases that can be detected from newborn screenings. Further, CHOC’s metabolics program is a leading destination for children from around the world afflicted with certain metabolic disorders, which are rare genetic disorders that result from a missing or defective enzyme in the body. These include disorders such as galactosemia, which impairs the body’s ability to process and produce energy from the sugar galactose, and adrenoleukodystrophy, which causes the buildup of very long-chain fatty acids in the brain.

“There are many, many very good success stories at CHOC, but there are still many things we can improve,” Abdenur says, citing too many false positives for some conditions that make families feel anxious and worried. “But we continue to get better at this.”

Newborn screening began in the 1980s. Over the decades, the Department of Health and Human Services has added recommended disorders for states to screen for in their newborn screening (NBS) programs. There now are 35 core conditions on the so-called Recommended Universal NBS Panel, as well as an additional 26 secondary conditions.

In addition to metabolic disorders, newborn screening can detect disorders related to hematology and immunology — such as sickle cell disease — as well as endocrine disorders, pulmonary diseases including cystic fibrosis, and such neurological conditions as spinal muscular atrophy.

How CHOC transformed its telehealth services during COVID-19

Between July 2019 and mid-March 2020, CHOC had completed 182 telehealth visits. After the onset of COVID-19 and to date? Since then, tens of thousands of visits have provided safe, high-quality care for pediatric patients at CHOC — and that number continues to grow.

So, how did CHOC elevate its telehealth offering so quickly and seamlessly?

It took a whole lot of teamwork, says Lisa Stofko, CHOC’s telehealth manager.

Tech steps

“We collaborated with CHOC’s information services department and had video technology set up within 72 hours,” she says. “This was essential, as we wanted to ensure patients were still getting the care they needed, and clinicians had the technology they needed to carry out appointments.”

To conduct telehealth appointments, CHOC clinicians primarily use a special version of Zoom, a video conferencing software with extra layers of protection. Clinicians also have access to InTouch, Health, PingMD and Doxy.me as well.

Patient safety remains paramount to providers, regardless of whether a visit is in-person or virtual. To ensure the protection of private health information during virtual visits, the telehealth team at CHOC collaborates closely compliance and information security.

“We want to remind families that CHOC’s doors have remained open, whether that be in person or virtually,” Lisa says. “We serve some vulnerable populations and we want to accommodate them safely.”

Increasing physician and patient comfort level

Although telehealth offerings predated the COVID-19 pandemic, some physicians had more experience conducting virtual visits than others. To increase comfort levels with new platforms, training videos were delivered to more than 700 providers.

Many patients and families were new to virtual visits as well. The telehealth team at CHOC wanted to make visits as easy as possible on families, so they prioritized replicating the in-person visit as closely as they could.

For clinic visits where patients are visited by multiple specialties, Zoom breakout rooms are utilized. This complex workflow requires close coordination with compliance and information services to ensure HIPAA compliance.

“Telehealth is not one-size-fits-all. The way one specialty care clinic operates may have a different flow than another,” Lisa says. “To make the process of adapting to virtual visits as easy as possible on families, we have interviewed providers and clinical staff on their typical in-person workflow and done our best to replicate that virtually.”

Before the appointment begins, families receive clear communication from their provider’s office on how to prepare themselves for a telehealth visit. The team recognizes patient-facing tech support as an essential part of ensuring a seamless appointment. Care coordinators empower patients with education and support for the continuum of care. Materials are translated into Spanish and Vietnamese. And just like with in-person appointments, translators are available during virtual visits, too.

Ensuring patient satisfaction

To measure patient satisfaction with the telehealth experience, CHOC’s telehealth team launched a satisfaction survey which is sent to patients within 24 hours after their appointment via text, email or phone. To date, results have consistently hovered around 91%, compared to a benchmark of 86%.

“We continue to monitor survey results and identify opportunities to further improve patient experience,” Lisa says.

Ongoing optimization

A 20-member steering committee was established from key stakeholders from across CHOC’s health system — including administrative executives and physicians — to further improve the telehealth experience and capabilities at CHOC.

Future plans include additional features to further replicate the in-person experience. The team is working toward kicking off and wrapping up a patient’s online appointment with a virtual visit from the same medical assistant. This would provide not only proper intake protocols, but also quality customer service and a personal touch.

Another tactic the team is working on implementing is streamlined notifications for parents – especially those of medically complex children who may have multiple telehealth visits with various specialists in the same day.

“We want to make sure that parents are easily able to keep track of appointments, and that we are not under or over communicating to them, causing additional stress,” Lisa says.

Moving forward, the CHOC telehealth team is doubling down on its commitment to ensuring telehealth remains a safe, high-quality and stress-free experience for providers and patients alike.

“There is a difference between a two-way video and telehealth,” Lisa says. “We are committed to making telehealth a seamless experience for both patients and providers, and ensuring that it replicates the safe, quality care patients are used to receiving in person.”

Learn more about telehealth at CHOC.

Leading-edge biomarker research aids in infantile spasms management

The CHOC Neuroscience Institute has partnered with the Pediatric Epilepsy Research Consortium (PERC) to advance treatment for infantile spasms.

PERC is a national consortium inclusive of more than 54 epilepsy programs, with 25 centers collaborating on infantile spasms research.

“PERC’s inception 10 years ago was born out of the American Epilepsy Society and a select team of specialists interested in building a wider network and infrastructure for large-scale clinical trials. Many diseases, like infantile spasms, are rare, and collaboration within PERC offers a wider patient pool for researching such uncommon conditions,” says Dr. Daniel Shrey, pediatric epileptologist at CHOC.

Dr. Daniel Shrey, Pediatric Epileptologist at CHOC Children's
Dr. Daniel Shrey, pediatric epileptologist at CHOC

Dr. Shrey was recently selected to lead PERC’s infantile spasms sub-group. In his new role, he is coordinating efforts between over a dozen pediatric epilepsy centers to catalyze multi-centered research on infantile spasms, a devastating type of epilepsy that typically begins in the first year of life.

Much of the current research on infantile spasms focuses on the visual analysis of a patient’s EEG, whereas Dr. Shrey’s research uses a computational approach. His research uses various mathematical tools to analyze neural data and identify new biomarkers of disease. Most of this work is done in collaboration with Dr. Beth Lopour, assistant professor of biomedical engineering, who leads the Laboratory of Computation and Translational Neuroscience at the University of California, Irvine.

“A novel biomarker we are studying is functional connectivity — measuring how activity in one part of the brain impacts another. We use characteristics of the brain network to predict how patients are likely to respond to treatment, compared to visual measures alone,” Dr. Lopour says.

She and her students develop computer code and perform data analysis for their research.

“This approach removes human interpretation and natural biases to instead focus on the data to make clinical decisions,” Dr. Shrey says.

Biomarkers also advance research by beginning to tell researchers how a disease responds to treatment and evolves over time. Discovering and validating a biomarker opens the possibility for a future clinical trial for patients with rare diseases.

The PERC infantile spasms group combines specialists in biomarker research, genetics, RNA genetics and brain inflammation, among others. In the future, the epilepsy field will look to quantitative approaches to guide clinical decision-making, ultimately improving the lives of children with epilepsy.

Learn how CHOC’s neuroscience expertise, coordinated care, innovative programs and specialized treatments preserve childhood for children in Orange County, Calif., and beyond.

How CHOC pediatricians helped raise immunization rates in Orange, Los Angeles counties

Further championing the importance of vaccines in protecting children’s health and well-being, a quality improvement project recently completed by CHOC pediatricians successfully increased childhood immunization rates in Orange and Los Angeles counties. The project produced a number of QI strategies that could be replicated by pediatric providers across the country who are likewise seeking to improve immunization rates among their patients.

The project, funded by an American Academy of Pediatrics grant, focused on children ages 19 months to 35 months and their adherence to the Combo-10 portion of the AAP immunization schedule. The immunization panel known as Combo-10 includes DTaP, IPV, MMR, HiB, HepB, VZV, PCV, HepA, RV and Influenza vaccinations. The AAP’s immunization schedules outlines recommended ages for routine immunization administration.

Nationwide, the compliance rate for Combo-10 is between 40-50%. This means as many as half of U.S. children are not considered up to date on vaccinations, leaving them vulnerable to contracting these 10 illnesses the Combo-10 panel protects against.

“We sought to make sure that children ages 19-35 months were up-to-date with all immunizations they should have received by their age,” says Dr. Dan Kowabunpat, a CHOC pediatrician and project co-leader.

Dr. Dan Kowabunpat, a CHOC pediatrician and project co-leader.

Participating in the project were 15 practices across CHOC’s Primary Care Network including 87 providers who collectively care for approximately 60,000 patients. Each practice sought to raise immunization rates 5% over baseline figures – a goal they would not only meet but succeed, with immunization rates raising 5.8% overall.

Also participating in the project were UCLA, Vanderbilt Children’s Hospital, Penn State Children’s Hospital, the Children’s Hospital at Oklahoma University Medical Center and Gundersen Health System.

Although a recent California law eliminating the possibility of a personal belief exemption for immunizations raised kindergarten vaccination rates, rates for younger children had remained low.

“Southern California’s vaccination rates skew low. CHOC’s Primary Care Network tends to have higher than average vaccination rates for our area with between 60% and 70% of our children fully immunized, but we recognized there was still work to be done to protect children,” says Dr. Eric Ball, a CHOC pediatrician and study co-leader.

The reason behind lower-than-desired immunization rates, per Dr. Ball, is not necessarily because parents don’t want to immunize.

“The fault lies with missed opportunity,” Dr. Ball says. “If a patient is sick during a visit, or if their well check was scheduled before they’re due for a vaccine, over time these missed opportunities build up and then we have kids who are not fully immunized.”

The quality improvement project, completed earlier this year, included both clinical education for staff, as well as strategies that could be replicated and implemented by other practices with similar goals.

Dr. Eric Ball, a CHOC pediatrician and study co-leader.

Clinician education

  • Physician learning sessions — Led by pediatric infectious disease experts from CHOC, these sessions provided vital education on both quality improvement efforts, as well as strategies for discussing the importance of vaccines with parents.
  • Front-office staff learning sessions — While essential to practice operations, many of these clerical team members do not have formal medical training. As the first faces patients and parents see before their doctor, these staff members would routinely fields questions such as, “Am I getting shots today? Do I need this vaccine? What does this vaccine do?” With more comprehensive training, staff members were better able to speak to these topics, and curious patients and parents were more informed.

Monthly strategies

For the first three months of the project, participating practices implemented strategies aimed at boosting immunization rates outlined by project leaders. For subsequent months, each practice identified strategies based on their specific patient population and office dynamics. Proven strategies include:

  • Checking eligibility at all visits — Providers began checking immunization eligibility at every non-sick visit, rather than just well-checks. For instance, if a patient visits their pediatrician for a sports physical, their doctor checks for vaccine eligibility and administers any necessary vaccines. Before this project, checking vaccine eligibility was only done at well checks, but 75% of appointments are not checkups.
  • Implementing a recall system In collaboration with CHOC’s information services department, each practice developed a recall program to identify patients who were not up to date on vaccinations. The practice would then send calls/texts/postcards to remind patients to come in for immunizations.
  • Promoting staff vaccinations Practices took this project as an opportunity to provide education that staff were receiving vaccinations, too. For example, each CHOC staff member’s employee badge features a color-coded sticker updated annually indicating they receive an influenza vaccine that year. New signs in some offices read, “If you see this sticker on my badge, it means I got my flu shot, just like you.”
  • Waiting room activities One practice created a flu quiz for patients to complete in the waiting room, as a way to start a conversation with kids about vaccines.
  • Nurse appointments Walk-in flu shot offerings were implemented with nurses. Historically, patients had to make an appointment with their pediatrician.
  • One-on-one QI sessions Quality improvement advisers from CHOC’s population health team held on-on-one sessions with providers to pour over their practice’s immunization rates and how it compared to other practices and discuss strategies for boosting immunization rates.
  • Comfort measures — Comfort measures for immunization delivery, including distraction devices, sucrose solution for babies and mindfulness techniques for older children.
  • Collaboration CHOC physicians leaders collaborated with colleagues at participating sites around the country to share findings and best practices.

Virtual CHOC pediatric lecture series launches

The inaugural session of a new CHOC virtual pediatric lecture series will cover the management of acute chronic otitis media.

Held Aug. 27 from 12:30 to 1:30 p.m., the session is designed for general pediatricians, family practitioners and other healthcare professionals and will address:

  • Indications for antibiotic therapy and the recommended choice of antibiotics in the management of acute otitis media.
  • Appropriate otolaryngology referrals of a child for placement of ventilation tubes in the management of acute and chronic otitis media and discerning the role of adenoidectomy in the management of otitis media.

The session will feature CHOC pediatric otolaryngologists Drs. Gurpreet Ahuja, Nguyen Pham, Kevin Huoh, Jay Bhatt and Qiu Zhong.

The series is part of CHOC’s continued commitment to bring the latest, most relevant medical news to community providers. Additional sessions will follow.

Register for the series here.

CHOC Health Alliance recognized for excellence

CHOC Health Alliance (CHA) is among a select number of physician groups to be recognized for excellence by national trade organization America’s Physician Groups (APG).

In its first year participating, CHA – a 100 percent Medi-Cal physician-hospital consortium in the CalOptima Network of physician groups – earned a ranking of four-stars and was named “Exemplary” in APG’s 2020 Standards of Excellence Program, an annual comprehensive survey that evaluates its members’ performance in delivering risk-based, coordinated care.

“CHOC Health Alliance is honored to be recognized in its first year participating in the APG survey,” said Dr. Sara Marchese, CHA’s Senior Medical Director. “This award provides further validation of our efforts to provide the highest level of quality and service to our members as well as support for our care providers.”

The Standards of Excellence Program assesses physician groups based on six rigorous categories:

  • care management practices – clinical system supports for quality and efficiency on a population scale;
  • patient-centered care – critical components of access, convenience, cultural responsiveness and customized individual care;
  • information technology ­­– funnel for accurate, actionable information to support clinical decisions and coordinate team care;
  • group support of advanced primary care – designed to make the patient-centered medical home a system-wide model and to revitalize the discipline of primary care;
  • accountability and transparency – response to the public demand for objective information regarding performance, patient service, and regulatory compliance; and
  • administrative and financial capability – aimed at managing complex relationships, diverse revenue streams, innovative payment alignment and risk, and demonstrates how physician groups are responding to sustainable healthcare reform.

Now in its 14th year, the Standards of Excellence program ranks organizations on a scale of zero-to-five stars. The program was founded in 2006 as an annual, comprehensive survey to evaluate the coordinated care infrastructure and value-based care performance of its accountable physician group members.

APG is a not-for-profit, mission-driven association organized to help accountable physician groups improve the quality and value of healthcare provided to patients. It represents and supports physician groups that assume responsibility for clinically integrated, comprehensive, and coordinated healthcare on behalf of patients. In California, APG represents more than 180 physician groups across the state.

Learn more about CHOC Health Alliance.

Understanding the role of cultural stigma on seeking mental health services

By Dr. Sheila Modir, pediatric psychologist; Baleska Alfaro, licensed marriage and family therapist; and Dr. Ava Casados and Dr. Sarah Ruiz, post-doctoral fellows at CHOC

For some people, making an appointment with a mental health provider may be a personal and independent decision. For others, the decision to seek therapy services may be influenced by their culture or community, as each culture has its own understanding, interpretation and beliefs around mental health symptoms.

Our own culture also teaches us ways to cope with distress and whom to rely on for support during difficult times. This may impact whether a person seeks mental health services and treatment, or their decision not to seek care at all.

In many cultures, negative stigma about mental health symptoms or therapy services is a major obstacle to getting professional help. Research shows that people in racial and ethnic minority groups in the U.S. are less likely than White people to seek outpatient therapy services. Many ethnic minority groups are more comfortable going to their primary care physicians or family members for assistance with mental health symptoms as opposed to speaking with a mental health provider. We all want to be accepted by our communities, and sometimes fear of shame or embarrassment prevents people from seeking mental health treatment.

For instance, Black families may be understandably reluctant to seek mental health therapy due to the longstanding history of discrimination, racism and mistreatment the Black community has experienced at the hands of providers in the U.S. Instead, they tend to take an active approach in handling adversities independently and directly. They also tend to rely more on spiritual resources for emotional support. While these beliefs and approaches are valid, overly negative views of therapy can keep children who do need a higher level of care from getting that help.

Studies show that Latinx (a gender neutral reference to a person of Latin American cultural or ethnic identity in the U.S.) families are also less likely to trust mental health providers compared to White families and are more likely to rely on social support from extended family and other community members. When Latinx individuals do tell others about their experiences with stress or emotional difficulties, they often focus on physical symptoms such as trouble sleeping or loss of appetite and are less likely to discuss the thoughts or feelings that are bothering them.

For Asian American and Middle Eastern American communities, cultural beliefs that seeking mental health treatment will bring shame and dishonor to the family leads some people to internalize their symptoms instead of seeking therapy. Many Asian American children have described feeling pressured to appear perfect and successful, and therefore keep their symptoms secret. For Middle Eastern American adolescents, research has found that they tend to seek support from other family and religious community members.

While these beliefs and approaches are valid, overly negative views of therapy can keep children who do need a higher level of care from getting that help.

These examples are broad, but they illustrate just a few of the reasons why ethnic minority children are much less likely to receive therapy when they need it. Ultimately, it is the responsibility of the mental and medical health system to make services more accessible to under-served families, and to spark change to counteract myths about the stigma of mental health symptoms and mental health treatment. Parents can also play an important role in examining their family’s own cultural beliefs about treatment and identifying ways to advocate for their children to get expert help whenever they need it.

How our community can end mental health stigma

So, how do we, as parents, healthcare professionals and the community begin to work on eliminating the stigma surrounding mental health disorders and accessing mental health services? After all, one in five children experiences a mental health disorder.

Here are some tips that can help our children and families feel more comfortable with identifying, discussing, managing and accessing services for mental health.

1. Seek reliable information — A first step that we can take to end mental health stigma is to seek out reliable and accurate information about mental health disorders, treatment options and resources in our community. Trusted sources can include, but are not limited to:

When speaking to children about mental health, use resources that are age-appropriate and engaging. A young child may find books helpful, while an older child may prefer to get information online. Look over resources with your child to help them find reputable sources of information and avoid popular social media platforms as your only source of information. Not sure how to start? Here are a few resources for kids:

2. Use appropriate language — The resources listed above can help you understand how to talk to your children about mental health issues, as well as how to dispel mental health myths they might have heard about conditions and treatment. Using correct language can reduce any shame or guilt you or your family and friends may have about mental health and can create a space that makes it easier for children and teens to speak openly about their own struggles and seek help.

3. Celebrities normalizing mental health conditions — Because so many people live with and manage symptoms related to a mental health condition, it isn’t hard to find a celebrity or well-known public figure your child admires who has a mental health condition. We can use celebrity or public figure examples to help normalize mental health conditions and access to mental health treatment. Our children will be more open to discussing their mental health condition and to trying out mental health services if they know that their favorite singer, actor or athlete also lives with a mental health condition.

4. Learn to explain your child’s mental health condition to your support system and community — Once we have accurate information about our child’s mental health condition and treatment plan, it could help to share this information. If we share information about mental health with our families, schools or places of worship, as well as other members of our support system, they can each better understand the child’s mental health and how they manage symptoms. Sharing information can also help increase empathy and support for the child’s well-being.

5. Seek support in your community — Children and teens with mental health conditions may not know anyone else with a similar diagnosis, which can impact their self-esteem. For teens especially, finding support from an online community may be a helpful way to openly speak about their mental health condition. Parents may also benefit from knowing other parents with children who have mental health conditions, as this can allow families to find a sense of community or support. Your local National Alliance on Mental Illness chapter offers peer support groups for parents and individuals with mental health conditions.

6. Advocacy — Engaging in advocacy is another way that parents and community members can help break down mental health stigma. Organizations like National Alliance on Mental Illness engage in advocacy and policy change using individual’s stories. Advocacy can help raise awareness about important mental health issues and help dispel myths and break down stigma. It could also have positive impacts for those who are engaging in advocacy, helping to develop a sense of solidarity and common purpose.

Learn more about mental health services at CHOC.

How a children’s hospital set up an on-campus daycare in 72 hours during COVID-19

Rocking babies to sleep, logging kids onto Zoom school lessons, and coloring with preschoolers – these activities were all in a day’s work for CHOC child life team as they ran a pop-up on-campus daycare center for children of hospital staff during the COVID-19 emergency this spring.

“It brought me back to my early days as a parent,” says Amber Chavez, a special programs coordinator for the Cherese Mari Laulhere Child Life Department.

That the child life department could ultimately be tasked with setting up on-campus childcare for hospital staff in the event of a large-scale disaster or crisis was well-known among the team. They had long planned for that possibility, stocking up bins of activities and supplies carefully marked by age group – just in case.

So, when schools in Orange County, Calif., began closing on-campus instruction in mid-March, the team sprang into action immediately.

A survey conducted through CHOC’s emergency communication system revealed that nearly 600 staff and physicians did not have backup childcare. Then, the child life team, in collaboration with executive leadership and other departments, scurried over the weekend to establish an on-campus daycare for physicians and staff who directly support patient care and throughput and had no other childcare options.

A child life specialist sits with two children enrolled in CHOC's on-campus daycare for staff.
Child Life Specialist Peggy Mok with a CHOC staff member’s child

Just in time

Within 72 hours of receiving notices of school campus closures, the center had an emergency operating license, and was open and available in a conference center of the main hospital campus.

In addition to a robust programming schedule, the compound featured a space for naps, a play area, computer stations for school-aged children, a diaper-changing area, and anything that could possibly be needed to care for children of a wide age range while their parents worked in the hospital.

“CHOC providing these services was heaven-sent,” says Dr. Sonia Morales, a hematology/oncology fellow who enrolled her daughter. “It made a very stressful time less stressful. There is no greater feeling than having your child squeal with excitement when she’s being dropped off.”

The team quickly established a schedule and routine – and support from many other hospital departments was critical.

Older children would get checked-in, their backpacks placed in a cubby and any upcoming Zoom class appointments set as an alarm on a phone. After enjoying breakfast provided by food services, the children could play video games for a bit sometimes – to their delight – broadcast on the center’s large screen. A team of CHOC physical therapists would come by twice daily to lead the kids of all ages through activities and movement exercises.

“We tried our best to support the kids through this difficult time as well,” says Eric Mammen, the child life department’s creative arts supervisor, who helped develop the daycare’s schedule and oversee day-to-day operations. “We also helped with homework when needed and I had to learn how to do elementary math and English again. I admit I had to use Google a few times helping the kids with their homework.”

CHOC's conference center is transformed into an on-campus daycare center
The conference center at CHOC Hospital converted into a daycare center

A true collaboration

The project was truly a collaboration between many departments across the health system, including environmental services, food services, legal services, patient care services, human resources, information systems, plant operations, regulatory, safety and security, and volunteer services.

And the result was a daycare center that provided wonderful care, structure and fun – not to mention peace of mind for many CHOC working parents who could rest assured their children were safe and happy while they supported patients. 

Little Diego Valencia had never been in daycare before he came to CHOC’s center, says his mother, Jamie, a nurse in the recovery center.

“He will remember all of them forever,” she says. “Without child life’s kind hearts, I would not have been able to work. It was easy to leave Diego in their care because they took such good care of him.”

Being able to check on and nurse her young daughter has been a relief for Dr. Bhavita Patel, a hematology/oncology fellow.

“I cannot say enough about the phenomenal child life staff taking care of our children,” she says. “Bless them for their diligence and flexibility during this time. It takes a village, and they have quickly become a crucial part of mine. My anxiety and overall mental health have improved drastically as a result.”

A child life specialist sits with two children enrolled in CHOC's on-campus daycare for staff.
Special Programs Coordinator Amber Chavez and two young charges

An exercise in agility

Running the center was also an exercise in agility for the child life department, requiring the team to quickly adapt and make changes to meet evolving needs.

The compound’s layout and schedules were adjusted occasionally when needed. Child life specialists made quick dashes to a nearby drug store for nightlights after noticing the windowless conference center was too dark for little ones to nap without fear. Plant operations were called in after realizing an overhead page could thwart a half hour’s work to rock a baby to sleep.

While already a close-knit team, the child life team grew more bonded after the experience.

“It wasn’t easy, but we grew stronger as a department and team,” Amber says. “We lifted each other up when times were tough, and we laughed in times of need.”

Earlier this month, the center’s operations transitioned to a national childcare chain. And though the child life team has transitioned back to their more typical work, the team might be feeling a touch of separation anxiety.

“The child life staff bonded with the children and they looked forward to seeing everyone,” Eric says. “I think it is safe to say that we will all look at the Wade Center a little differently now.”

Learn more about the CHOC Cherese Mari Laulhere Child Life Department.

How COVID-19 survivors can support others through plasma donation

For Steve Emfinger, donating his blood plasma at CHOC was fast, painless and a way to give meaning to his battle with COVID-19.

“It was very simple,” he said. “And to know it’s helping kids is very cool.”

Man donates plasma to help COVID-19 patients
Steve with his COVID-19 convalescent plasma donation at CHOC Blood Bank.

Registered with the U.S. Food and Drug Administration, the CHOC Blood Bank is available to collect and process blood plasma donations from COVID-19 survivors. These donations are being used to help patients at CHOC and throughout the community.

“We’re still learning about COVID-19, but it’s possible that those who have recovered from the disease have produced antibodies to protect them from the infection,” says Dr. Antonio Arrieta, a pediatric infectious disease specialist who is studying the use of convalescent COVID-19 plasma at CHOC. “If so, their blood plasma would contain these antibodies and may be helpful in the treatment of COVID-19 disease in others.”

Since CHOC began collecting and processing blood plasma donations from recovered COVID-19 patients this spring, more than a dozen CHOC patients have benefited.

And as COVID-19 diagnoses continue to mount in Orange County and fall approaches, the need for blood plasma donations will only grow at CHOC, Dr. Arrieta says.

A surprising diagnosis

Typically, an early riser with boundless energy, Steve just felt zapped in late winter. Attributing the lethargy to two back-to-back trips he’d just taken, Steve decided to work from home. 

Though his symptoms – including a slight cough and dizziness – were minor, Steve’s energy shift was so atypical that he ultimately decided to go to a local hospital. There, he was tested for the flu and strep throat and had a chest scan, which all came back negative.

Steve had one more test – for COVID-19. A couple days later, he got word the test was positive.

Steve hunkered down at home, and notified any friends, family and neighbors he’d been in contact within the weeks before his diagnosis. Some days he felt good – able to work remotely and cook meals – and others were much more challenging.

All in all, though, Steve felt fortunate to have mild symptoms, never experiencing a fever, body aches or significant respiratory problems, despite a lifelong mild case of asthma.

“I think I’m blessed to know that I had minor symptoms and was able to get through it and my family didn’t get sick,” he says.

As Steve’s diagnosis came early into the pandemic’s spread in Southern California, he was initially reluctant to share his story with a broader network of friends, family and colleagues. But as he got more comfortable, Steve’s decision to tell others proved fortuitous.

A friend who worked at CHOC told Steve about the COVID-19 convalescent plasma program and how badly donations were needed.

“I had heard that blood plasma was needed, but I didn’t know where to find a donor center,” he said. “I called CHOC the next day to make an appointment.”

The process to donate plasma to support COVID-19 patients
Steve has already donated plasma twice at CHOC to help support others fighting COVID-19.

Steps to donate

Potential donors must meet some criteria to be eligible:

  1. Donors must show laboratory test proof of their COVID-19 diagnosis either through a diagnostic test (nasopharyngeal swab) at the time they were sick, or a positive serological test for SARS-CoV-2 antibodies after they recovered.
  2. Donors must have been symptom-free for at least 14 days before they donate.
  3. They must meet all other health requirements for blood donors.
  4. Though donors may be male or female, female donors will need to meet some additional requirements that the Blood Bank team will help explain further.

Confirming these requirements takes about a week. Once donors are confirmed and at the Blood Bank, the simple donation process takes about two hours. Donors can return every 28 days to donate again.

Steve is already on his second donation at CHOC and plans to continue in the future – in addition to donating blood and platelets.

“To help someone else makes it all worth it,” he says.

To schedule an appointment or learn more, call the CHOC Blood Bank at 714-509-8339.

Virtual Mini-Hack to address problems amplified by COVID-19

Pediatric nurses, caregivers, data scientists and more are invited to join an upcoming virtual “Mini Hack” to solve problems magnified by the COVID-19 crisis.

Co-hosted by CHOC and UC Irvine, the Aug. 3 CHOC-ZOT!-ZOOM COVID-19 Mini-Hack Virtual Event gathers these groups, along with business leaders, computer science and nursing students, entrepreneurs and industry leaders to solve real-world conundrums.

The day of collaboration is designed to help solve problems falling into many categories including school reintegration; work reintegration/remote work; pediatric mental health; telenursing/telemedicine/remote care; ensuring families feel safe to seek care; and ensuring healthcare workers feel safe to provide care.

Participants will work in teams to devise answers, develop prototypes and pitch solutions to their problem. In doing so, they will learn how to solve real-life problems through design-thinking concepts, while interacting with innovation leaders and mentors to get hands-on experience with pitching ideas.

Further, the event provides potential opportunities for commercialization, including the potential sharing of net profits.

Register here.